Health — Issue No. 16 — Friday, May 15, 2015 (HTML)

420 Strategy Room, Morris J. Wosk Centre for Dialogue
580 West Hastings Street, Vancouver, B.C.

Present: Linda Larson, MLA (Chair); Judy Darcy, MLA (Deputy Chair); Donna Barnett, MLA; Dr. Doug Bing, MLA; Sue Hammell, MLA; Richard T. Lee, MLA; Jennifer Rice, MLA; Bill Routley, MLA; Dr. Moira Stilwell, MLA

3. The following witnesses appeared before the Committee and answered questions:

The following electronic version is for informational purposes only.
The printed version remains the official version.

REPORT OF PROCEEDINGS
(Hansard)

SELECT STANDING COMMITTEE ON
HEALTH


CONTENTS
Page
Presentations: End-of-Life Care	225
A. Woo
A. Burton
J. Peacock
J. Taylor
C. Gordon
H. El Masri
K. Jamieson
A. Kube
M. Grewal
P. Hawley
B. Lindsay
R. Morris
B. Kaminsky
J. Sloan
J. Slater

L. Larson (Chair): Good morning. My name is Linda Larson, and I’m the member for Boundary-Similkameen and the Chair of the Select Standing Committee on Health. Last fall the committee issued a call for written submissions on how to ensure the quality and sustainability of the B.C. health care system.

The committee sought submissions addressing the following questions. How can we improve health and health care services in rural British Columbia? In particular, what long-term solutions can address the challenges of recruitment and retention of health care professionals in rural British Columbia? How can we create a cost-effective system of primary and community care built around interdisciplinary teams?

What best practices can be implemented to improve end-of-life care, which is what we are addressing, mostly, this morning? How can we enhance the effectiveness of addiction recovery programs?

On behalf of the committee, I would like to thank the close to 400 organizations and individuals that made submissions. Today’s meeting is one in a series of public meetings to hear from those who have made written submissions. We have a number of presenters that have been invited to expand on their submission on the question of improving end-of-life care.

I’ll now ask the committee members here to introduce themselves, starting with the Deputy Chair, to my left.

J. Darcy (Deputy Chair): Welcome. Judy Darcy, MLA for New Westminster and Deputy Chair.

L. Larson (Chair): Today’s proceedings will consist of 15-minute presentations from each of our invited witnesses, and each presentation will be followed by 15 minutes for questions by the committee members.

The proceedings are being recorded by Hansard Services, and a transcript of the entire meeting will be made available on our website.

With that, I’ll turn the floor over to Mr. Woo and invite you to present your submission.

First of all, I want to thank the Select Standing Committee on Health for allowing the Burnaby Seniors Outreach Services Society, BSOSS for short, to make this presentation. It’s a privilege, I think, to do that. We’d like to suggest that there is a key role that a non-profit, community-based volunteer organization can play to help the objectives of your committee.

In the 15 minutes that’s been allotted to me, what I thought I’d do is tell you who we are, what we do and how we do it. Then of course there will be time for questions as well. Hopefully, in that process you can correlate in your own minds what impact our services provide to the B.C. health care system, specifically on today’s proceedings, on improving the end-of-life-care process.

BSOSS is a non-profit society, incorporated on May 13, 1987, originally under the name of Burnaby Seniors Peer Counselling Society. We amended that on August 25, 1992, to its current name of Burnaby Seniors Outreach Services Society to perhaps more accurately and more inclusively reflect our mission statement, which is, basically, to support the emotional well-being of seniors — as we like to say: “Seniors helping seniors help themselves.”

We do have an office. We’re located at 2101 Holdom Avenue in Burnaby, British Columbia. The office is staffed by two part-time employees. So right there you have costs — an office and some salary considerations. The rest are all volunteers, including myself.

Perhaps a bit about myself. I’m a retiree. I found BSOSS two years ago when I went to one of their fairs. I thought, “What a mission this organization has,” and it kind of sold me. Being retired, you have some time on your hands and, hopefully, you can contribute back to society with some knowledge I’ve acquired during my careers.

I might say that the person who authored this written submission to you, Danelle Laidlaw, is our president. She regrets that she’s unfortunately not able to be here. Ironically, she is now engaged in providing caregiving herself.

Our organization, as I say, is composed of volunteers, of which at present we have 31 senior peer counsellors. They’re currently serving about 78 clients, and there are about six clients on a wait-list — roughly double the number of our peer counsellors, two cases to a peer counsellor.

We have, of course, a broad membership. Anybody can join our association; $10 a year. We hope that the members can participate in our activities. We’re also part of the British Columbia Peer Counselling Society, the barter-based organization which kind of sets standards for all the peer counselling societies in the province.

What do we do? Well, peer counselling itself is basically providing one-on-one counselling services, specific-
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ally to seniors who are in emotional distress. Secondly, we also provide support to caregivers in our society.

On that note, I give a quote from Rosalynn Carter, the wife of ex-president Jimmy Carter, who said: “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” Rosalynn Carter was very heavily into the health of the U.S. That was her passion.

Perhaps to lay the groundwork for my presentation, it’s a good idea to illustrate, with a typical client, the challenges that come to our members and our service corps. A typical client could be — I’m not being sexist here — usually, female, probably in her mid-70s, likely single — there are males, of course — so they could be either spinsters or widows. They’re usually on some form of medication because of age-related illnesses, and there may be mobility issues as well. She maybe lives alone or under assisted-living conditions.

The family, being in the society of today, may be quite distant. In any event, of her close circle of friends, given her age, many of them have passed on or moved away. In fact, the constant refrain we hear is: “The only time we get together is at funerals.” There are usually some feelings of loneliness, isolation, perhaps abandonment, frustration over health issues.

Overlay that, if I may, with some caregiving duties, perhaps. That same person may be caring for either a sibling or, perhaps, an elder parent or a spouse — in other words, a caregiver — or perhaps she herself or he himself is also being cared for by a child, who’s also being stressed by the caregiving duties.

What do we do when we peer-counsel? Well, the basic assumption is this: older people tend to depend on their peers and neighbours for help rather than on their children or younger persons. Now, this is not surprising, because peers share similar feelings and parallel experiences, especially when they have a similar age. They talk the same language, and of course, they may share similar values as well. I think they’re also finding that their peer counsellors are less intimidating — initially, anyways — than talking to a professional counsellor.

That’s why one of the requirements for being a peer counsellor in our organization is that they must be at least 55 or older. So there is an age restriction. Now, I have an issue with that, because there are many fine counsellors out there who are under 55, but we have to have some sort of cutoff.And it’s pretty flexible, I might say.

Peer counselling is perhaps classified as, in my terms, “active listening.” In a nutshell, that’s what it is. The peer counsellor listens to people coming in for help, exploring their problems with them, clarifying the needs and fostering a supportive, therapeutic climate to help them cope with their problems.

Peer counsellors must be trained, of course. We do have a mandatory 60-hour training course, spread over three months, once a week. All the candidates meet, and they take training by a professional gerontologist. They’re trained to, one, understand the client. Secondly, to define what problem the client is facing; clarify what the issues are; set goals with the client as well; explore alternatives with the client; reach a conclusion. And after the conclusion is reached, support the client in the execution of that solution.

Throughout all this we tell our peer counsellors they must not — must not — assume that the client wants some solution. They must not argue with the client. They must also not judge the client. They all have values. And they must also never advise the client: “This is what you should do or ought to do.” Let the client reach his or her own conclusion, and then help the client implement that conclusion. It’s much more sustainable.

We also provide peer support to caregivers who are, largely, unpaid. This is provided through — and I’ve provided to you — education materials. We publish that. There’s a cost to that, of course. We also hold educational seminars every year. This year we’re going to hold, perhaps, another one, assuming we get another gerontologist. I’ll tell you about the funding issues later on.

We’ll advertise in the papers about: “Come to our meeting. It’s a fair.” We’ll tell people to come and see what other services are provided by our organization and other allied organizations. We also hold educational seminars throughout the year. There are lectures on a continuing education basis, not only to our peer counsellors but to the public, and these are all free.

More importantly, for those people who are providing care and giving support, they do need to come together and support each other. We have a program called A Time for Us, where people with similar needs come together and each support each other. Now, this is not new, of course. There are many what I call disease-specific support groups out there. You’ve heard of them: the Alzheimer society, Parkinson’s, heart and stroke, cancer society — many support groups. But ours is general. It doesn’t rely upon a particular or distinguish one particular disease.

How do we do what we do? Well, as I said, it’s a one-on-one basis. It’s private. What differs us from any other organizations that are in the milieu out there is that we go to the client. We go to their home, or if they don’t like that, we’ll go meet in a neutral, public place — a library, a restaurant, for example — just to get to know the client. That way, we find that the client is much more open, as a one-to-one, so that we are not just passive and saying: “Come to us. We’re here.” Rather, we get clients assigned to us.

How do we get our clients, you may ask. Well, we get a lot of referrals. The Burnaby Hospital social workers identify people who are coming to the hospital not really needing medical care. But because they’re emotionally distraught, distressed, they identify them as potential
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candidates for peer counselling. Quite a few referrals from them.

Quite a few referrals from the Burnaby mental health teams. Other seniors centres — for example, Confederation Centre, Edmonds and Burnaby Neighbourhood House — refer many clients to us. Some are actually self-referred. They hear about us or read about us in materials, and they’ll come to us and ask for help. And I say this: that some measure of our success is that of the many clients who come to us on referrals, four of them have chosen to become peer counsellors themselves.

We also support our peer counsellors to make sure they always keep the sharp edge. We have what is called a case review. Every month we get the peer counsellors who are needy to come together and say: “What is your case? How is progressing? How can we other peer counsellors help?”

We also have continuing education for peer counsellors to inform them on what’s out there, what’s available. There are many allied agencies out there that we assist with and they with us. For example, you’ve heard of Meals on Wheels, a very popular program. The crisis centre, where they deal with many distraught individuals who are suicide-minded. Nidus, for example, which talks about representation agreements. We make sure that is informed as well. The neighbourhood house is also a very fine referral.

Granted, I think there are many fragmented services out there. I see on the horizon opportunities for us and other organizations to collaborate more, not only to help each other but to save costs, especially in a climate where we are funding challenged.

On that point, may I say this. We were originally funded by the Lower Mainland United Way. It was three years ago that they chose to do that. Unfortunately, in 2014, because their funding got cut — by donations — they had to terminate funding to us. We had to go and scramble to find other funding, which we have, not only through our own donations and crowdsourcing opportunities, but we also went to B.C. Gaming. They’ve come forward and said: “Here are funds for this year’s operation.” However, we still have to match that funding with at least 25 percent self-raised funds.

There are some challenges out there about how we continue our existence and providing our services to the public.

L. Larson (Chair): Thank you very much, Mr. Woo. Wonderful work that you do, obviously. I’m busy making notes, because I’m looking at my own community and thinking that this type of senior peer counselling would work almost anywhere in the province and is certainly a much-needed service. So thank you.

J. Darcy (Deputy Chair): Thank you so much. Wonderful presentation. And thank you for your work.

You touched on this earlier on in your presentation. Seniors experience a high degree of social isolation. That, then, has a negative impact on not just their psychological well-being but also their physical well-being.

Can you sort of describe for us a bit — I don’t know if you refer to folks as clients; they’re not patients — the types of situations that you’re dealing with? If you could just paint us a bit of a picture of some of the seniors that you deal with and what it is they’re confronting.

A. Woo: Yes. In fact, I go back to my own personal experience of being a counsellor.

One example would be a senior. This is a man, actually — unusual. He was over 90 years old, in his own apartment, physically quite healthy, I thought, although he had mobility issues. He phoned us, actually, and said: “I need to talk to you.” I was assigned to his case.

After getting to know the individual, I basically sensed that he was very frustrated — frustrated not by physical challenges or financial loss, etc., but by abandonment. His family…. His wife is deceased, but he has a daughter who doesn’t talk to him. He has a granddaughter. He has tried to curry favours by buying her a car, because she needed a car. He thought it would curry some returns from her. After buying the car and saying, “Thank you very much, Grandpa,” he never heard from her again. Clearly, he felt abandoned.

I said: “All right, we have to get to the bottom of this. How do you want to solve your problem? How can I help you?” He said: “Well, obviously I’d like to make connections.” He’s getting older, and we all confront our age-related end of life.

Basically, we came to the idea that maybe I, as a peer counsellor, should break the ice. I said: “Why don’t you just give them a call?” “I would never do that,” he said. That was just his personality. He said: “I don’t want to be seen as on my hands and knees, begging for attention.” I said: “Well, perhaps a peer counsellor or perhaps I can call your daughter and have her understand what your needs are. Perhaps she can come forth on her own.” We left it at that.

That’s one example that I can talk about. There are other examples given to me by our other peer counsellors who share on a case-review basis, where a husband and wife don’t get along and where the wife is supporting the spouse because it’s her due to do so. How do we get around living in close quarters, where one is very frustrated with the other? Again, trying to get to understanding the challenges that faces as well.

I think there have been a few years already for the peer counselling program to work. Now we are actually study-
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ing how palliative care could be more consulted, somehow, in the community. Have you gotten in touch with, say, the Burnaby palliative care society, and can you foresee more services and more training for people interested in palliative care?

A. Woo: I might say that palliative care having to do with end of life, dying with dignity issues — that comes across our table when we look at our clients. If the client is in a stage where he or she needs palliative care, obviously it’s beyond our purview, and we’d recommend that client to palliative services.

I see a need for identifying who needs palliative care, and that’s how we could train our counsellors — that, yes, dying at home is perhaps the best way. But don’t forget that if you can’t control your pain, and emotionally speaking, perhaps you should be in a palliative facility. That’s, again, a case of convincing the client to make that decision.

B. Routley: Yeah, I do. I wondered if, when you run into these peer counselling situations…. I’d use an example. I know in rural communities often seniors have a problem with, simply, transportation. In fact, I know of a case where, in Mill Bay, they actually started a group called Going That Way Anyway. They needed to get a ride to the mall, which is just a three-minute drive away, yet because of mobility or site issues, they couldn’t get there.

Does your group run into people who have problems getting to doctors and that? Do you have services available for that, or is that a different volunteer group? How do you deal with that kind of…?

A. Woo: No, we don’t provide what I call a taxi service, but our peer counsellors who identify the need for transportation with the client refer them to handyDART, for example, and other services that are available in the community. That’s part of our continuing education to our peer counsellors.

D. Barnett: Do you find that for a major portion of your clients, as you call them, most of the issues are abandonment, feelings of loneliness, more than other things?

A. Woo: I must say that is absolutely correct. I think the Chair has mentioned that, obviously, mental wellness gives rise to physical wellness, hence less impact and cost on our health care system.

There are some isolation issues, definitely, in every case. In fact, I think it was two or three years ago that the Vancouver Foundation had a study done, and they found that in the big city, and perhaps in small centres as well, isolation, abandonment, loneliness are big issues amongst all and especially seniors.

In fact, you may have heard that there is a federal initiative. As we speak now, the Voice of Burnaby Seniors is meeting this morning on how to access a $21 million initiative announced by the hon. Alice Wong about seniors isolation.

They’re creating what are called “clusters of services,” and we saw that already before. You get a group together of other societies like Meals on Wheels and Crisis Centre, you pool your resources together, and you form a cluster. This is going to happen on a more formal basis. Wait on that from the federal ministry.

D. Bing: Thank you for your presentation. It’s wonderful what you people have been able to do there with, except for one staff person, all volunteer help.

I was wondering about the selection process for your peer counsellors and whether 100 percent of the people that apply are accepted or whether a certain number aren’t because they’re just not deemed suitable and how you do that.

A. Woo: A very valid question. First of all, getting back to our mandate that we do not judge, we advertise about our peer counselling course, usually held once a year. All the applicants to apply are interviewed to make sure that they have the ability to go through a three-month course — because it’s participatory, it’s discussion-based, and it’s learning. There’s not a test at the end, but there are supposed to be measurements, milestones, and you have to make presentations to the group.

It makes sure that that person has the basic ability to do that but also the interest and the commitment, because we expect that those who graduate will be an asset to our organization. Now, we can’t hold them to this unwritten contract. It’s all based on honour. Many of them come to us and learn. They’ll go out and do a case and then afterwards come back and say, “It’s not for me,” and that’s fine. But yes, we do have some assessment in accepting candidates, and hopefully, that candidate will stay with us on a longer-term basis.

D. Bing: Do you have an average person? What sort of backgrounds and education do these people have?

A. Woo: They have to be over 55, because of the age restriction, as they have to be a peer. Most of them are retirees. There are a few who are still working, yeah. We ask them about their variety of backgrounds. You have to know the peer counsellor, but I can say that they come in a wide variety. I can say that they’re heavily females. In my course I think we had 12 graduates; ten were women. Again, that just shows that maybe the men aren’t available, but we can only take what comes to the door for us.

In terms of the demographics, most of them, as I say, are community-based, local individuals. We call our-
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selves the Burnaby Seniors Outreach Society. We’re limited by geography in that respect, but we do accept referrals from outside. Most of our people live in Burnaby, but they will still service people outside Burnaby.

L. Larson (Chair): I think we’ve just about run out of our time, unless there’s one more question, a very quick one.

B. Routley: For the people that do indicate that isolation is an issue, or abandonment, how often do the counsellors visit? Is it something weekly, monthly? Is there a limit to the amount that you actually will see a client?

A. Woo: There is no limit. It depends upon the peer counsellor and the client, and the comfort level and the needs, of course, of each other. Don’t forget that our peer counsellors are all volunteers. They have another life. Yes, you can have sometimes very demanding clients, but most of them, I think, understand that these are volunteers and you have to be somewhat reasonable as well.

L. Larson (Chair): Thank you very much, Mr. Woo. Your society is performing a great, great service, without a doubt. I’ve got some really good ideas here for my own communities. I appreciate that as well. Thank you for being here this morning.

L. Larson (Chair): Good morning. Please grab a seat there. Thank you very much for taking the time to come here this morning and do a presentation for us. We’ll give you about 15 minutes. I can wave or warn or raise a finger when we get to the one-minute thing. That gives us a chance to ask you questions as well.

Welcome to the Association of Registered Nurses of B.C. I’ll let you introduce yourselves.

A. Burton: My name is Andrea Burton, and I’m the director of communications and government relations for the Association of Registered Nurses of B.C. I’m also the person who did a lot of the writing in this report, which is why, I think, I’m sitting here today. I would actually like to first thank the committee for having us here today and also really thank you for adjusting to some very last-minute changes.

Some of you know our president-elect, Zak Matieschyn. He was really interested in presenting today. This is a topic that’s near and dear to his heart. His mom has had MS for years and has been struggling with end-of-life issues. He’s also a nurse practitioner, so it hits him in two areas. Unfortunately, his mom passed on Wednesday night. He’s not able to present today, and I’m here in his place. I hope that I do justice to him and his mom, because I know this topic really does mean a lot to him.

I also want to introduce the people who are going to support me in case I fall down on my head on this. Joy Peacock is our executive director of ARNBC and is a nurse and can answer the more specific nursing questions. Alexandra Arndt is our director of corporate planning and is also here to support in this.

I don’t want to talk a lot about ARNBC itself, but we are really new. I’m not sure if everyone is familiar with us. When I say we’re new, it often surprises people, because, of course, nurses have been around forever. How can we have a new nursing association?

Even though we had an association that was almost 100 years old, in 2005, when the Health Professions Act came in, the mandate of the association changed. It became the College of Registered Nurses. Of course, their mandate is protection of the public, and they can’t advocate on behalf of the profession.

It took a few years for nurses to realize that there was a real gap. We had a really missing voice in terms of advocating on behalf of the profession. So we’re only about four years old. We’re getting quite far ahead now in working on policy, and certainly end-of-life care is an area of policy that nurses really need to be invested in, because nurses are often the ones who have their hands on the patients the most frequently and the most often.

We are also really proud to be a member of a very new coalition, the B.C. Coalition of Nursing Associations. That includes the four professional associations: ourselves, ARNBC; the Licensed Practical Nurses Association of B.C.; the B.C. Nurse Practitioner Association; and the very new Registered Psychiatric Nurses Association of B.C.

ARNBC has a bit of an advantage in that we actually have staff. We actually have people who are paid to work. The other associations are all done by volunteers.

In the spirit of being a coalition and recognizing that one voice for nursing is actually really important, ARNBC and the other groups have come together. If this report had been about six months later, you would have seen it co-branded from all five, including our nursing educators. But because it was December, we weren’t quite there yet.

I’m happy to say, though, that I do speak today not just on behalf of RNs and nurse practitioners that ARNBC represents, but really with the support of all of our colleagues — the licensed practical nurses, the psych nurses and the nurse practitioners. We’re working together on a bunch of other things, so you’ll continue to hear from us. We’re working together on the nursing regulations, which are currently posted, and also on the ministry policy papers, which I’m sure you’ve heard a lot about.

To talk a little bit about our submission, when we started doing our research…. You can see from our submis-
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sion sort of where we started looking. But I wanted to really highlight three areas that we really looked at closely and the one I recognize as being a bit of an elephant in the room. That’s the Conversation on Health archives.

It’s a little bit controversial sometimes, how much money was spent and how it’s been used. But the reality is that the information that was brought forward by British Columbians — whether they were health providers, administrators, people who use the system, or their families — is still very, very rich.

It’s really interesting to go back and look at what people said in those conversations, because every single British Columbian had at least an opportunity, if they wanted to speak, to come to one of those sessions and talk. The amount of information that we are able to derive from that is still, to this day, really huge.

The other thing we’re really focused on is looking at what other jurisdictions are doing. We don’t always have to reinvent the wheel. Some places have great outcomes on certain things that we can learn from and we can really build on here in B.C. We’ve taken a lot of time to dig around and look at what’s happening in Canada and other parts of the world on some of these issues.

Then the last area that I want to focus on, which is really big, is that we talk to nurses all the time. We hear so many great innovations and ideas from the people who are really — I hate the expression “at the front lines” — there talking to patients and know patients well. It’s important to us to gather those ideas. Nurses have an incredible amount of knowledge and incredible amount of investment in the system. That was the third area of research that I wanted to bring forward as something that we’re really trying to explore and will continue to explore.

We brought forward five solutions. I’m not going to list them. I’m just going to start telling you about each one of them, just because of time. The first was that we recognize that there needs to be more investment in home care and hospice. The CNA, the Canadian Nurses Association, which we’re the jurisdictional representative of, has a campaign currently called “Health Is Where the Home Is.” That campaign really focuses on what we hear from so many people — that people want to die at home.

We really looked at that. We recognize that home is not necessarily where you raise your family, live with your spouse, retire. Home is, for most people, the last place that they actually experienced good health. It varies. It can be assisted living. It can be residential care. It doesn’t necessarily have to be the little house at the end of the street.

We also recognize that though it’s a very romanticized idea to die at home, it can actually be very difficult. It can certainly cause an incredible burden on the family. No one knows better than nurses that that can be an enormous stress.

One of the things that we really need to explore further in British Columbia is the idea of hospice care and providing an in-between place that is still familiar enough and comfortable enough that you don’t feel like you’re in an acute setting but at the same time takes some of the burden off the family and gives you the necessary resources wherever you are.

We also need to really explore the idea of how we’re transitioning people out of acute care back into their homes or into the community. We hear this from nurses a lot. Nurses feel that when patients are discharged, they’re often given a long list of directions. “You need to call this person for home support, and you need to get this established within your home.”

The reality is that often patients go home, and they don’t do it, or they feel like they should be followed up, and they’re not. That’s not the fault of the discharge nurse, but there’s a gap that happens between discharge and being back at home, and it causes enormous stress for everyone. Often it returns the individual back into acute care, which is obviously what we’re trying to avoid.

Lastly, ARNBC has spent quite a bit of time exploring how we could better use paramedics in a few different situations. One is emergency rooms. One is home and community care. The other is in residential care. It’s a challenging question for us because, as you can imagine, nurses, like every other profession, worry that their jobs are going to be replaced. We really want to take the approach that we’re going to be patient-centred, not provider-centred. What would actually work for the patients?

In terms of home care, there are several really interesting and innovative pilots happening across Canada. We know the minister has expressed some interest in this.

One of the ideas is to actually have paramedics dropping by different individuals and checking on them during the week, taking blood pressure, just making sure that nothing has changed. It doesn’t replace a home care nurse, and certainly we would anticipate that nursing would play a fairly significant role in managing and case-managing this. But there’s nothing that anyone who has an elderly or ill person at home would like better than to know that more and more people are checking, right? There’s no disadvantage to having an extra health provider come in.

One of the other ideas that we think is very interesting is co-locating paramedics within residential communities. There are some really great studies on that. In Nova Scotia they’ve done one where between 9 a.m. and 9 p.m., which is the time when most hospital admissions occur for that age group, they actually have paramedics who are working in the residential care facility. The outcomes have been fantastic in terms of reducing the number of hospital admissions.

Paramedics get to know the patients. They get to know the clients of the facility, so they get a sense of who’s there. And they can tell as well as the nurses…. It’s just another check and balance to see how the patients are doing and if they’re functioning well.
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One of the things that we also wanted to talk about was the developing of databases. Really, it comes down to two. We mentioned one in our report, but as we sort of sort through it, we realize there are two.

One is just the very practical fact that in British Columbia palliative services really vary across the province. What you can access in Fort St. John may be very different than what you can access in Burnaby. That’s very challenging both for health care providers and for people in community. We really need to start to pull together and figure out what the palliative services in B.C. really are so we can start to address gaps.

I believe we also very much need a website or a resource that patients and their families can actually access. One of the things we do here the most is…. When you are in that situation, it’s very hard to know what you’re supposed to do and who you’re supposed to call.

To take you back about 13 years or so — and you can figure out who this is — I was a speechwriter in the public affairs bureau and worked very closely with the Minister of Health at the time. It was quite interesting because…. His mother was ill and in the hospital. He came to me one day and said: “You know, I’m the minister, and I speak with people all the time around health care. I read document after document. I know the system well, and I don’t actually know how to help my mom in this situation. My family is having trouble advocating through this system.”

So we know, and we hear that from so many individuals. As he would say, he was one of the most advised people on health at the time, so why was it such a challenge? Part of that is people don’t know where to go for information.

One of the brilliant things we’ve seen lately is the EpiPen ads on television. I have to say that a year ago I would not have known what to do with an EpiPen, but “Blue to the sky; orange to the thigh” is brilliant.

We need something for people, because everybody, all of us in this room, are going to get to a point where we’re going to need to access seniors services for ourselves or for our parents. Knowing how to navigate the system is hugely important.

A lot of times when people are released from hospital, they don’t understand things like: “How do I get home support in my home? Who do I call for that? How do I get a hospital bed if that’s important?” When you’re having a health crisis, your health literacy goes down and down and down. We really need to start supporting people on how to move forward on this.

We want to talk about preparing health professionals to communicate differently. This is also a bit of a tough call, because one of the things that all of us have to deal with — and health care providers more than anyone — is trying to have the difficult conversation. It’s not always done very well.

I know that for myself. When I was growing up — I grew up in Ontario — when my dad was dying, my sister lived in Winnipeg and had two small children. Our physician and our nurses and the people around us really struggled to answer the very basic question: “Do we need to call my sister to come today?” It’s hard when you don’t know. As a layperson, I didn’t know — Did we have two weeks? Did we have six months? Did we have hours? — until one very compassionate nurse pulled us aside and said: “You know, you probably need her to come in the next 24 hours.”

Our health providers need to have a better understanding of how to have those conversations, and they’re telling us constantly that they don’t feel like they have the education and the knowledge to do that well. It’s really important that we give them that training. Nursing can certainly be a key part of that.

We also believe very strongly that the system…. And we can call them patient navigators or nurse navigators, depending on if you’re talking about the navigator or the navigatee. This is something that in the conversation of health came up time and time again, people saying: “What I need is a touchstone. I need someone who’s going to walk me through from the start to the finish.”

We see them in B.C. in cancer care. In various places in Canada they have expanded it more and more, because people are realizing that it really is important to have that person who’s able to help the family deal with whatever is coming their way and understand who they need to call and how they need to move forward.

Then lastly, we really need to talk about spiritual care. Nursing and spiritual care — there’s an enormous body of literature on it. But nurses will tell you that they themselves really struggle to feel like they’re in a place where they’re competent to provide good advice on spiritual care. But of course, they’re the ones the patients are often asking because they’re the ones the patients know.

This, too, is an area that’s really near and dear to my heart. My sister is the executive director of spiritual care at Manitoba Health Sciences Centre in Winnipeg. If I’ve learned anything from her — I’ve probably learned a lot from her — what she would say is that after all of the interventions have failed and there’s absolutely no other possibility, the people who are standing beside the bed along with the family are probably the nurses and the spiritual care providers. We somehow have to make it possible for our nurses to understand better how to support people in spiritual care, and they’re not well trained in that area.

There are two options. One is that you work with the nurses to get them a better understanding. The other is that as an interprofessional team, we really encourage the linkage between spiritual care and nursing, and a spiritual care team that actually is trained to come in and speak in that situation. Part of being a nurse is understanding your patient and your patient’s needs. We’re happy to have nurses identify the need for spiritual care, but many nurses aren’t comfortable addressing it. That’s really hard for the patients who’ve developed a relationship.

That is the framework that we brought forward in our discussion paper, recognizing that nursing as a whole — the four associations but nursing as a group of professionals — provides a kind of care that really speaks to end of life. There are so many different kinds of projects and initiatives that ARNBC — and certainly the other nursing professions would agree — can really support the system in B.C. into making some very good transformative change. There are some really basic concepts that we’re not doing well, and we need to do them better. Nursing sees it every single day, and because they see it, they tell us. We need to tell you, and you need to be able to figure out how to put it together and come up with some answers, because the situation right now is really not working for our patients.

L. Larson (Chair): Thank you very much, Andrea. You’ve touched on everything, of course, that we’ve touched on a little bit as we’ve moved through this process. I have a ton of questions, but with the time limited, I’ll do one. Then I’ll pass this on.

The navigator idea is not a new one. Could you tell me who you would think would be the navigator? Is this a separate individual who’s actually not necessarily a health care professional but somebody who knows the system, who takes that person who is being discharged and connects them in their community with everybody or gives them the information they need in the system? Are they necessarily a health care professional in some way, or could they just be somebody else, like a person that is trained to be able to access all the systems? Do you have a solution for that or an idea for that navigator end of things?

A. Burton: There are both in different places in the world. It just depends on the system. The health care system is so complex, and in B.C. it’s very complex. I think the models that have demonstrated to be most successful are actually the ones that do have nurses as the navigator.

I know in Ontario and I think it’s Nova Scotia you actually…. I mean, they’re focusing on cancer care, but you actually have to have a special certification in oncology and you have to be a nurse in order to even be considered for the program.

It would depend. I mean, maybe there’s room for both. The challenge with a non–health care provider…. One is, of course, that they’re not regulated. They’re a patient. You would have to have a lot of structure around making sure that the advice they’re giving is the advice you want them to be giving.

L. Larson (Chair): Yeah. I was just going to say. The tendency to diagnose or try to help somebody with something without having the background knowledge could be…. You could step over that line quite easily. Yes, thank you.

J. Darcy (Deputy Chair): Yes, thank you so much. A zillion questions. We’ll come back to other topics another time, hopefully.

You talked about case management, discharge from hospitals, nurse navigators — that whole area. I know that we have a huge disconnect after people are released from hospital. Often nurses don’t have enough case managers to put together a comprehensive integrated care plan.

I know we’ve spoken some about the experience of Denmark, where they actually have them. My committee gets very tired of me raising Denmark, but there are great models there of integrated care for seniors. I believe it is the person who’s responsible for the case management…. That role continues, with that nurse playing the lead role upon discharge, both developing the discharge plan as well as then coordinating the care from the different disciplines that might be providing support to the person in the home.

I wonder if you could speak more to that, just a bit more in depth about that model.

J. Darcy (Deputy Chair): Can you speak…? Surely, we need to have a connection between the plan that’s developed upon discharge and then the follow-through once the person is released into the home.

J. Peacock: Right. I think nursing would realize that discharge begins the day of admission. The first thing that we start thinking about is the fact that they’re going to be discharged. End-of-life care could be, also, lots of different age groups, not just seniors. The younger that people are, the harder it is on family.

There absolutely has to be that link. There has to be a…. I know a lot of jurisdictions have struggled with it. I am not sure about the Denmark model. I know the Scandinavians have done a lot about keeping people in the home and haven’t built a hospital since the ’80s, I think. They just haven’t. They haven’t had to because they keep people in the home. So part of it is not having to go to the hospital first. I think often as nurses we see…. Because of the culture we have, the hospital becomes the go-to place for everything, including, of course, end-of-life care.

There needs to be a cultural shift — I think is what you’re speaking of — about having that link between home and hospital but actually trying to take the hospital out of it. That’s a big shift that we need to move to. I don’t know if that answers.

J. Darcy (Deputy Chair): It’s really about how the coordination works after discharge in the community and who’s responsible for that.
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J. Peacock: Right. Right now, of course, this morning in the news, in Ontario they’re now looking at all the structures they’ve put in place for home care, and they’re looking at dismantling the whole business — the CCACs. There are 41 of them, I think. They’re just looking at…. That’s not working out. So we have a lot of good and not so good examples.

In British Columbia…. I know that someone said to me yesterday that it’s really hard to put the horses back in the barn when they’re out. But there has to be that coordination — the right kind.

D. Barnett: Thank you very much for coming. I come from rural British Columbia, and I’ve had a lot of experience with family dying and home care and things like that. Coming from a small community, I find that we have some programs that are easier to access because you have more collaboration. Your doctors and your nurses, I find, work better together.

I guess because we know everybody, there’s more passion. Maybe it’s just what you call street talk, but everybody seems to know who’s doing…. I know when my husband was dying at home, I’d get the phone call from the nurse. So I think we function better.

A. Burton: I think you’re right. I grew up in a small town, and I would say the same, certainly from my experience growing up there. The doctor still makes house calls, right?

What I think we hear from patients is that there’s a social isolation a lot of times in cities, especially when you’re not able to get around and move around. We have an elderly lady in West Vancouver who has been seeing a nurse practitioner for the past two years, and the nurse practitioner is relocating her practice. She can’t find a doctor, because we all know how hard that is in the Lower Mainland, and we can’t find her a nurse practitioner. So right now she’s looking at how she’s going to get her prescription. She’s fairly housebound.

We know that there are serious challenges. I think it’s harder to acquire, sometimes, supplies in rural areas, but it’s easier to acquire support.

D. Barnett: It depends where you are. I say, you know what? There are difficulties. We all understand them, but there are also success stories. We should build on those successes, even though they may be small.

L. Larson (Chair): It’s strange. As you said, sometimes you can be in the middle of an urban centre and have more difficulty getting a human contact than in a rural area, even though we have shortages in other areas.

B. Routley: You mentioned home care and hospice care. I certainly hear that as a common theme amongst seniors — the need for more home care. I wondered what you saw as the additional role for nurses or nurse practitioners in delivering home care. What do you mean when you talk about home care and hospice care? Do you mean more nurses actually sent into homes? What do you mean?

J. Peacock: What we’re hearing, as Andrea mentioned earlier, are a lot of innovative models, even putting a nurse practitioner with a paramedic to avoid hospitalizations and having more nurses — all kinds of nurses, whether they’re LPNs or RPNs — in homes.

I think it depends on the patient, though, so I hesitate to be provider-centred here. I think it should be patient…. Each patient would individually have a different need for a different kind of provider, whoever that is. I think that’s how we’re trying to approach this, with looking through the lens of what would benefit that patient the most. Often it would be a team, right? It would be a team of people.

D. Bing: Thank you for your presentation. I was just thinking of my father-in-law, who passed away in January. It was his wish to be kept at home in his last days, and so the family did that.

I think that’s the ideal that every person wants, to die at home rather than in hospital, but the family didn’t really realize how difficult that would be as the end approached — you know, the bowel movements and being bedridden and not having a lift to be able to get him out of bed and things like that. It is really difficult. So certainly I can see the need for every community in the province to have palliative care services and hospices and this sort of thing.

I was just wondering. Do you know the numbers of communities that don’t have hospices? I know in the Lower Mainland we seem to be doing very well and in the larger centres. But in, say, rural B.C. are there lots of communities that don’t have these services?

A. Burton: I don’t know the numbers exactly, but I know that it varies. It depends on the size of the community and the involvement of the community. I don’t know if anyone actually would know that. We could check, but I don’t know if there would be….

As we were saying, there needs to be a real database that starts to collect some of that exact information. One town might have a great hospice and the town 15 minutes down the road doesn’t have any, but they share because it’s a community that’s used to sharing their hockey teams and their arenas and whatever else.

I think it would be very hard right now to assess that, but it certainly would be something that would be interesting to look into and see.
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R. Lee: Many years ago we had doctors visiting homes, the home visit, but now it’s very difficult to get a doctor to go to a home. You suggest that probably a nurse can pick up some of the job for the doctor. I see the advantages of that, but how can we integrate that so that the payment or whatever, the time, could be efficiently used? And how can the system actually accommodate this kind of movement?

J. Peacock: I know Andrea knows more about this than I do, but particularly for nurse practitioners, I think the payment model right now needs some help.

A. Burton: Our nurse practitioners: we only have 317 of them, to start, so that’s pretty limited. Most of them work for specific populations or in specific positions — you know, they’re in nephrology at St. Paul’s or through the NP for B.C. program, which government introduced I think three years ago now. They’ve really been assigned to marginalized populations, so maybe the nurse practitioner can only see patients who are cardiac patients, or they can only see patients who are dealing with diabetes, chronic disease. It’s hard for people to just access a nurse practitioner.

The ideal is that nurse practitioners could hang a shingle like a doctor and run a business. Unfortunately, they can’t really in British Columbia because there are barriers in the legislation that really need to change. Most nurse practitioners right now are assigned to very specific jobs. If the program expands — obviously, we need more of them — then nurse practitioners can play an enormous role not only in supporting the home care sector but also just in taking some of the orphan patients up.

Nurse practitioners, like all health professionals in British Columbia that are regulated, understand their scope of practice and understand that there comes a point when they need to refer to physicians. That’s part of their job. But a nurse practitioner can do a lot. I mean, this lady who needs prescriptions filled? A nurse practitioner can certainly support that kind of work. There does need to be more integration of them, but right now we just don’t have the numbers of them to have that kind of ability to have that impact, unfortunately.

L. Larson (Chair): We’re just about out of time. Just a quick question regarding numbers. As you pointed out, we certainly don’t have enough nurse practitioners. Do we have enough nurses?

A. Burton: I think we’re better than we were in the early 2000s, when it was a disaster looming.

J. Peacock: There are some 1,500 more nurses this year than last year, so there are 38,000-something. I can’t remember the last three numbers — 475?

J. Peacock: There are 1,500 more this year through both education and migration — people coming into B.C. But there’s a constant churn, of course, because nurses can go anywhere, do anything, and people do go and do anything.

J. Peacock: I think a lot of the studies from the early 2000s said we’d lose everyone in 2010 or 2011. That has not happened. A lot of people are working….

J. Peacock: Yes, there’s quite a popular video going around on a nurse who’s 90 who’s still working in the U.S. I think like every other profession, that idea of retiring at 65 — we’re pushing those boundaries. At least I hope so, because I want to keep working, but I’m not 65.

I would hesitate to say there aren’t enough. I think there could always be more, but I think there are some more. I want to put the positive face on it and say what we need to do better is to keep people in the profession, because we can be quite hard on each other at times. I’m just being frank.

From the caregiver end of thing — just basic caregivers; we train those all the time too — that again would be, I would think, a bit of a shortage at the current time too. If we’re looking at trying to do more care in homes, the basic caregiver numbers….

A. Burton: They’re not regulated, so it’s a little harder to know what’s happening there. But I think in order to
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move some of this forward, we of course need to have the professionals to do it, right? Some of it is a bit different training. I know ARNBC’s talked a lot about what kind of education modules we could work with the other nursing groups to develop that will help support some of these changes, but we still have a long way to go.

L. Larson (Chair): Thank you so much for your presentation this morning. We really appreciate you taking the time to be here to talk to us. I’m sure you will be someone we have back again as we move forward and try to narrow it down into some very specific recommendations that we might like to make. Then we would probably like your help to sort of create that last report. So thank you very much for being here this morning. We really appreciate it.

L. Larson (Chair): Good morning. Thank you for being here. This is the Nidus Personal Planning Resource Centre and Registry. I will turn it over to you. Would you please introduce who you have with you this morning, Joanne, and then you can go right into your presentation.

J. Taylor: My name is Joanne Taylor. I’m the executive director and the registrar of the Nidus Personal Planning Resource Centre and Registry. With me are two volunteer board members of Nidus, Christine Gordon and Hassan El Masri, who will help with the presentation.

You have our presentation document, a comprehensive document, and a brochure of our registry.

Just to quickly introduce the organization. We are a non-profit charitable organization. The term “nidus” is Latin for nest. We like the symbol of support and safety, which speaks to the legislation, the representation agreement itself, the work we do and the principles we’re guided by.

Nidus was actually established by other community groups who had been involved in the grassroots effort to reform adult guardianship legislation — an amazing effort and partnership between community and government to create legislation. Out of that law reform came the Representation Agreement Act. Of course, there’s a lot of detail in that history, but I’ll just keep it focused on the Representation Agreement Act.

Also, I’ll just say that one of the drivers behind this law reform effort was the aging of the population. This effort goes back to 1989 — so very forward-thinking people.

When I became involved, I have to say I was very taken by the number of front-line health care providers that were part of the community-based law reform because they were very concerned that patients’ and clients’ voices were not being heard and their wishes were not being respected in the care system.

The Representation Agreement Act was created to ensure that. It’s a legal document people can make to authorize one or more personal supporters to assist them with decision-making or, if necessary, to act on their behalf. The legislation itself provides an ethical decision-making framework based on self-determination. So it really realizes that notion of patient-centred, person-centred care.

I would like to make a note that our written submission was focused on the personal planning registry service that we operate. However, you will notice in our presentation and in the material I handed out today that we’ve added a couple of other topics. This is based on some recent events — court cases and also discussions with our partners and others who have made submissions. I hope that’s acceptable.

In general, our recommendations are to ensure that we have clarity in education about the legislation, about representation agreements so that people can use it to do their planning. Perhaps the representation agreement doesn’t have to be used, because people will be able to make their decisions right up to the point of death. But our experience is that there are often times when people are going to need that assistance. Of course, with the increasing incidence in dementia, that is much more the reality.

Doing this planning is very important. People have to have accurate information in order to do that so they can make it, and they need confidence in the legislation so that their planning is meaningful. If it’s not going to have the effect, then people won’t do it. We want them to do it and for it to be meaningful and respected. Of course, we need responsiveness in communication about people’s wishes and about their plans. That’s where the on-line registry, which I’ll speak about, comes into play.

If I talk specifically about education, which we focus on, on page 2 of the document…. When I’m talking about clarity in education, I’m referring to consistency, accuracy and what I call completeness of messaging and education across all sectors and disciplines. We need everyone on the same page. That is not the case. We need this so that end-of-life-care planning is accessible. If we don’t have everyone on the same page, it won’t be accessible.

It’s also important that this education not be professionalized or, I call, legalized. It belongs to people. Some of you, I know, have followed this effort as the legislation has come before the Legislature. You may have heard about the late Reverend Val Anderson at one point saying that this is an amazing community-government partnership, with the legislation, and that it’s the people’s tool — made by the people for the people.

That’s what we do at Nidus in our education: help people help themselves and help each other. However, of course there are many players — people call them stakeholders — in this and new ones all the time. But again, the information is not necessarily accurate, or it’s not accessible to people.

Just to say that…. Legal professionals had never done health and personal-care planning prior to the representation agreement coming into effect in 2000, and the health sector has never had to deal with legal documents. So there’s some tension and things to work out around that.

I was really excited to hear you say that you want to build on the positive, because the good news is that we don’t have to create a bunch of new materials, training programs and workable legal documents. Nidus has comprehensive and tested resources because we’ve actually been at this since 1993. When the legislation was passed, we were taking it out and trying it out. So we have all that knowledge and information for the public and for professionals.

We just are small. We need funding, and we need institutional commitment to get everybody on the same page and to move forward. The public is having a terrible time accessing accurate and complete information about how to make a representation agreement. Then, of course, their supporters, their representatives need information on how to use it, or we don’t have follow-through. Then the professionals have to know how to honour it — what it means.

Our basic recommendation is that the Ministry of Health would work with Nidus. They have put out some materials. We tried to do that together. I said: “Let’s collaborate on those materials.” It didn’t happen.

Frankly, the feedback — which the ministry knows, and we’ve talked about it — is that the materials that they put out are very confusing to the public and to professionals. The ministry staff have told me that they’re quite concerned that people actually aren’t making the documents they need to make, based on their guide. We would very much like to work together, and I think that that’s what will help the public.

I’m going to move on now to page 3 and what I’ve called confidence in the legislation. We have excellent legislation in British Columbia. The Representation Agreement Act — I think no law has had more discussion and scrutiny. It is very strong.

However, the recent court case, Bentley v. Maplewood Seniors Care Society…. You’ve likely heard about that or seen coverage in the media. It has created some uncertainty. We’re concerned that it could erode public confidence in planning.

The ruling of the Supreme Court judge and the Court of Appeal was only about whether Ms. Bentley, who has advanced dementia in a care facility…. The question that the court dealt with and ruled on was whether or not she could give consent to spoon-feeding. The court decided yes, she could. So that’s really the end of the story, you would think.

However, the Supreme Court judge at the lower level went on to make a number of comments. They’re just sitting there. They can’t be appealed or rebutted. They’re sitting there really as unanswered questions. They have created a lot of uncertainty for people. That’s where we’re saying we need some remedy to that.

We have a legal practice group made up of legal experts and community experts. Many of us are involved in creating the legislation and seeing it along in the implementation and practice.

We were — we are, I think — quite taken aback by some of the comments. The judge suggested that feeding doesn’t fall under health care. It’s under personal care, even though she’s in a health care setting. The nutrition plan is by health care providers, but it doesn’t fall under health care. So we don’t, maybe, have the protections that are in the legislation, because the focus is on health care and health care consent.

If that might be the case…. Because we really need people to do this planning confidently, we’ve studied this carefully. We are suggesting that we need some minor amendments to reflect the intent of this legislation, that the representation agreement section 9 was designed for people to use for end-of-life planning confidently.

You’ll see on the top of page 4, and I won’t go over it all, that there are just minor amendments to make sure that we’ve covered everything so that it’s not unclear or uncertain. We would add personal care to the specific two sections, or two different acts and two sections. They’re minor. Again, we don’t have to go through some big law reform, create new legislation. Perhaps we could just call it tweaking.

Of course, if you make a representation — if you’ve got good education, you make your representation agreement, you’re confident in it — it has to be found. How do you find it? We have great technology today, so the idea of an on-line registry is not anything radical. Again, it’s built, it’s ready to use, and we need the health system to be using it.

The public is using it. The public has wanted a registry, and it was in the original legislation. Government decided not to put it into effect, but they have been supportive of our work to do that, and we have done so.

If you look at the last page, page 6 — because I wanted to allow time for questions — we did a little snapshot of the registry so that you could have a sense, perhaps, of how it works. There’s lots of detail. That was in our initial submission, various detail about the registry.

The top diagram is a snapshot of the home page of the registry, a secure on-line registry where people can store information as well as a copy of their documents. You’ll see that there are different sorts of doors that people can go in. We’ve circled the one called “access users.” Access
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users are authorized third parties. For example, a health authority would identify hospitals — the palliative care home program, various programs — and then individuals within that program who have to find this information already. They could be authorized to use the registry as a way to find information.

You can see in the diagram what an access user can view, on the left side and the first arrow. They can see who’s appointed. People type in that information. They can see when it was last updated or reviewed, which is always important to the health care providers. Are we talking about the patient’s current wishes?

They can also view a copy of the document and save it and download it in the chart, because in the middle of a crisis people may not have it with them. We’re trying to encourage people to make it ahead of time, and you don’t carry it around for six years or more.

L. Larson (Chair): Thank you, Joanne. In order for us to get even two or three questions in to you, we’re going to have to stop right now.

Without a doubt, this is certainly a recognized gap. We’ve discussed this many times, about the accessibility of a person’s end-of-life wishes and the validity of them, whether they would stand up in court — the fact that families can often, when someone can’t speak for themselves, totally ignore what they had originally put down as the way they wanted their care.

They seem to be able to do that. Families emotionally, at the last minute, can all of a sudden dictate how things can happen.

The idea of this would be it link it provincewide with every doctor and every hospital, because how else…? People don’t stay in the same place. They move around. So I can see that this is quite a bit bigger an issue than some of the others that we certainly come up across.

J. Rice: Yes, I have a question. I guess I have a hard time imagining how this works in a really robust, succinct way where everyone is participating. From what I understand…. If I use the example of my local hospital, it’s chronically short-staffed. It’s chaotic. It’s busy. People may express their wishes, whether they use Nidus or all the other confusing options that are out their right now. How do we know to access this when it’s so chaotic and so busy in an ER room?

Then I guess, secondly, what I was just listening from Linda is that if it’s electronically available everywhere, how about the on-line security and confidentiality? In so many other areas we have all these breaches, and we obviously haven’t resolved the technological glitches concerning privacy yet. So if you could comment on that.

J. Taylor: Of course one has to be extremely concerned about privacy and security. We’re very fortunate to have David Flaherty, the first Information and Privacy Commissioner of British Columbia, who’s a fan of the registry and who actually volunteered to assist us with privacy measures.

We’re working with a software company. The database is in Canada. It’s actually in Vancouver, so it’s not involved in the United States. We’re sensitive to that. And we’re using the best security and privacy measures. We’re very sensitive to the amount of personal information, so it’s minimal — the amount of personal information that’s required by the registry.

There are two things. Security relies a lot on the user and them protecting their password and logging off properly, that sort of thing, and also us monitoring. We have monitoring with our technical company with audit reports, etc.

To speak to your first point about the chaos in the system, I think one of our points is that this actually reduces that chaos or brings order to it. People in the system have to find out who is legally authorized to make decisions on someone’s behalf if they can’t do it themselves. This is happening right now.

They need some tools. This tool makes it easier for them. It’s usually the social worker who’s doing that. In the presentation, you’ll see that we have a very good relationship with the Association of and, frankly, the College of Social Workers around this. I think this is actually a solution for some of what you’re describing, because I agree with you. It’s a mess.

J. Rice: If I could just wrap up, I didn’t mean to…. Maybe I didn’t convey myself properly. In theory, I’m all for it. I support the endeavour, but I guess I do feel like it’s such a huge endeavour.

D. Barnett: It’s a great endeavour. I come from rural British Columbia, where we have many seniors organizations and many people doing some great work to help people move forward with their planning for their end of life. A book has been put out called My Voice. I’d like to know if you feel that that is sufficient.

I know where I come from that there are hundreds of those people using that book, showing the seniors how to prepare — and not just seniors but everybody. From my office I must give out 500 of those every six months. Do you see any deficiencies in that book?

C. Gordon: Well, I think that My Voice is a great start. We were concerned that the collaboration between Nidus and My Voice or the people who did My Voice wasn’t what it could have been. I think My Voice could be improved greatly.

I would say we need another version, and we need one that is more up to date, that brings people the opportunity to understand how to make sure they can communicate their needs. So I’d say it’s a good start, but not enough.

L. Larson (Chair): Thank you. We’ve got two minutes. Somebody else have a quick question that they’d like to put forward at the moment?

J. Taylor: I can tell you there are 6,000 people registered, more than one document. The majority would be seniors, but they’re not all seniors.

H. El Masri: If I could add something. I don’t know if any of you have gone on the Nidus site and actually taken a look at the registry. I also don’t know how many of you have ever tried to use the wills registry, but those are two very different things. When you look at the Nidus registry and you look at the wills registry, which is operated by the province, the Nidus registry is everything that you wish they had in the wills registry.

It is very slick. It is very robust. It is very comprehensive. To be honest, I advocate it to other…. I’m a notary public, so I prepare these documents for clients on a daily basis, and I get a ton of people through my office. When I tell other professionals about what the registry has and what it’s able to do, what it’s able to offer their clients and themselves, they are always surprised. It is an aha moment.

People are amazed to find out that there is a central registry where you can go on, put your wishes, upload your documents. They can be there for you. You can send links to your family. People have the ability within the hospital to access it. It takes about 15 seconds. It’s very quick, once the registration is all set up through the health authority and everything. It is very quick. It is very easy. It is very robust. If you spend some time actually setting up an account and taking a look at it, it’s really, really cool. It’s very powerful.

L. Larson (Chair): Thank you very much, from those of us who are not computer literate at all. I’m assuming it’s simple enough for those of us that only know how to press one button at a time.

L. Larson (Chair): Thank you very much for your presentation this morning. We really appreciate it, and obviously, the word here is “collaboration.”

We’ll just take 30 seconds here to switch over to our next set. We’ll allow our Council of Senior Citizens to get set up, and then we’ll get going.

L. Larson (Chair): Good morning. Art, I thought you had retired, and here you are.

I’ve had so many conversations with Art as the Parliamentary Secretary for Seniors, but I was sure that he had retired.

However, welcome. There is no better expert, I don’t think, for the Council of Senior Citizens than you, Art, so welcome this morning.

L. Larson (Chair): He’s only got a very short time to say it, and I will cut him off.

K. Jamieson: We also, if I may say, have some members of COSCO here, the COSCO executive and two members of the Retired Teachers Association. I want to suggest — because we’re talking about people’s experiences in this; we’re not talking statistics — that if there is some question you have that we can’t answer about personal experience, because that’s the theme, then we allow the executive members who want to speak to say something to address it if at all possible.

L. Larson (Chair): Yes. It’s not so much the time, but it’s the connection to…. Because we do record everything, they would have to move up to the microphones. We’ll see what our time is like.

A. Kube: Madam Chair, thank you for your kind words. I must say you’re a very good listener. As a matter of fact, I talked to a number of you people. And really the reason COSCO asked me to speak to the group here is because I’m the only one around who remembers where we started from when it came to the question of seniors health.

Really, it goes back to 1958, the first time when the Council of Senior Citizens Organizations, then very
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small, started to push for the medicare plan. As you know, we got that in 1960, and then we saw it transferred to the provinces. But the full effect really came into being when the Canada Health Act was passed, because it brought about some universality across the country and set certain standards.

However, we then saw, with some major change in the government about ten or 12 years ago, that things started to go awry, because we started to…. Instead of going to the government to ask them to improve health care, we were going there basically saying: “Look, don’t damage health care through the programs you’re doing.”

But the argument during those days was not so much on the basis of what the programs should do to help seniors to make our society more just. The debate was: how are we going to cope with the grey tsunami? I mean, that was the debate whenever…. “Well, we agree with you, but do you know how much that costs?” So it became a question of not pushing for increased benefits for seniors — how we can create better health outcomes — but the question is: how much can be saved?

During that particular time, we were busy. Doing what? Fighting the government to try to reduce the onslaught. We did that fairly effectively. I don’t know how many of you remember the first time you saw 5,000 seniors in front of the B.C. Legislature. That’s the first time the government started to pay some attention to us — to mitigate some of the damage of the legislation adversely affecting seniors.

I have some documents, which I’d like to leave with you, which talk about that period of time.

What we try to say is: “Look, we’re not the only country which is going through a process of aging. A good number of countries have gone before us, and they have coped.” So we started to look around the world to see what was happening, and we found a number of models which dealt with the question in a very positive way and for good outcomes of seniors without breaking the bank.

The three countries that I became very familiar with were basically Denmark, Austria and Sweden. They weren’t all the same models, but the model which sort of attracted me was really the Danish model of a universal program of home care and home support. In the first instance, it did provide 24-hour-a-day care, seven days a week.

The other thing is that the outcomes were very good. But the most important thing was that the capital expenditures for buildings went down to zero. For a period of 12 years, the Danes didn’t build a single new facility, because they were able to stand the intake into the acute care, comprehensive care and the assisted-living care in the country.

They did that by doing one basic thing: doing programs to keep seniors healthy and putting much more emphasis on the question of health care provision in a way where it didn’t become what you might call capital-intensive.

To a large extent, if you look at the Canadian model, it’s very capital-intensive. What is it? It relies very heavily on medication. As a matter of fact, in most instances, it’s overmedication.

It also relies on too much use of professionals, like doctors, where other professionals could do similar work at a lesser cost. More importantly, it would reduce, for instance, the waiting times to see a doctor and to have some sort of operation. Really, it’s in that direction that we want to go.

Therefore, we want to change a number of concepts. For instance, for too many years, seniors had to suffer from the proposition that everybody knew what was good for seniors. Well, we had to tell them that the only people who really know what’s good for seniors are seniors themselves.

The other conversation that we had to change was that seniors are a drag on the economy. Again, that’s not true. It’s not borne out. Seniors make meaningful contributions. They’re the largest providers, for instance, of volunteers. So our motto at COSCO became “Seniors helping seniors.”

We also know that volunteers are not going to resolve that particular problem. We know that what was required…. Because we live longer, that time frame required more assistance. Therefore, the question…. We then brought in, and a good number of seniors organizations did — to go for a universal home care, home support program.

Then we went out to see what the costs were. The first time we mentioned…. I guess it was in a presentation that we made to the Minister of Finance of British Columbia and the Hon. Ida Chong, who was the Minister Responsible for Seniors. That’s what they said. “How much does it cost?” Basically, we then found out that the overall costs to the health care system started to stabilize and actually started to decline.

Now, when we pushed that proposition, the answer was: “Well, yeah. That’s in Denmark. That’s in Sweden.” All kinds of political motivations were attributed to us for even suggesting it. But we found out that it wasn’t…. The only thing we heard was coming from Denmark, for instance. We heard that American researchers went over there and spent a couple of years looking at how the program worked and everything else. They came to the conclusion, in the report I also want to table with you…. It became very clear that it was very, very cost-effective, but, most importantly, it was much, much better for seniors in this country.

The next thing which naturally happened was we had to try to popularize these ideas. We held, every two years, a conference which was attended, in each instance, by approximately 300 seniors from all over British Columbia
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and about 100 people who are either service providers, educators or politicians.

Surprisingly enough, we had a good number of municipal politicians who were very interested in it, because they felt the brunt of the seniors’ scorn. And seniors, let me tell you…. Because of our age, we take certain privileges which other people don’t dare to take. So our voice is heard.

These conferences basically started to put a mosaic together of what is required in these situations. Really, if you look at it, what are we talking about? We’re talking consistently about health, housing and income, because they are so closely interrelated.

You know, if you have a relatively good income in your retirement, you can buy some of these services. But the other thing we had to also destroy is the feeling that these rich, fat seniors should pay for all these things. What isn’t understood is that income is not universal at the same level to all seniors.

In this province, I hate to admit, seniors poverty is actually increasing. Seniors homelessness is increasing faster than any other segment. Therefore, we’re basically saying, because we want to maintain universality, if you do these other things, tax them.

The rich seniors will pay through their income tax. If you set up a hodgepodge of different services for people at different income levels, you’re really creating a divided society. If you want to have some social cohesion, you have to keep it this way.

So in these conferences we looked in great detail at what could be done. There are at least two people here who attended the conference. We didn’t push just things for us seniors, because it was becoming very evident that there were other problems associated with increased longevity.

For instance, we held a conference on elder abuse when the International Day of Older Persons came up. We had a very successful conference. What became very apparent was that as years went on and the income of the family started to stay even or decline, as it was — and still is, to a certain extent — with it rose two things: increases in mental health problems for the workforce or the unemployed workforce, and elder abuse. Surprisingly enough, the dirty little secret came out that most of the elder abuse occurred within the family.

Do you know what the reason was? The financial pressure on the family and the extension of life, where the transfer from one generation to the other took much longer. That, in itself, created these tremendous pressures. You know, nobody talked about that.

I mean, when you talk about elder abuse, you never hear: “Well, it’s the son or the daughter.” Usually you can get away by saying, “Well, it’s not really the son. It’s the son-in-law” and “It’s not really the daughter. It’s the daughter-in-law” — who causes these problems.

Nevertheless, it’s a problem. When you talk about the question of elder abuse, you’re already talking about a health problem too. There again there was a question which came to our attention, because one thing about seniors: seniors trust other seniors. Their value systems are very similar. They’re brought up in certain circumstances.

Then the next thing which became very apparent to us, what we had to do, was to reduce the influx onto the residential care section to community care.

Seniors — their residence, their home, is really where their heart is, where their friends are, where their support services are. But you know, if you really look at the distribution of the health care dollar, that’s not the story you get. It’s that segment which gets the least money. Therefore, I think there has to be a rethinking. The prevalent thinking out there still is: when people live to be 68, 69. Not very much has changed.

I was at my doctor’s yesterday, and we had a good discussion about it. He says: “Yeah, you’re right.” I say: “Well, why am I right?” He says: “You know, it’s not me. Some of the other doctors — they learn a little bit more about gerontology, and so on and so forth. But usually, when you come in with some chronic illness or something, the first question that’s asked is: ‘How old are you?’”

I said: “I had to live that through myself.” At the age of 70, I got horrible back pains. So I went to the doctor, and the first thing he said — he looked at me after sort of listening to me — was: “Look, Mr. Kube, you’re 70 years old. I’m going to give you some anti-inflammatories. Try to live with it.” Well, I just about died six months later.

Our organization doesn’t want to be that brave and say that there’s too much ageism in the practice of medicine, but my god, it’s starting to get really exposed. Right now, for instance, when you see research coming forward, there’s really, if you have a heart operation, very little difference in terms of outcomes if you’re 40, 50 or even 80.

So in this particular area it’s very important that we overcome ageism in the delivery of health care.

L. Larson (Chair): I’m going to stop you there, Art, if I can, so that we get a chance to ask a few questions too.

I will readily admit that you have been, and your organization has been, on the leading edge of change for seniors. I’m quite confident now that a lot of those things are happening, however probably too slowly for your particular like, but they are happening.

The idea of universal home care and home support is very much on the top of not only this committee but health in general right now. I will give you the kudos for having started the push in that direction, but definitely, it has been heard, and it is happening.

I’m going to ask the committee here if they’d like to ask some questions, and then, perhaps, if some of your members are the ones more appropriate to answer, that would be fine as well.
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J. Darcy (Deputy Chair): Thank you very much, Art, and welcome, and welcome to everybody from COSCO executive. We could listen to you for a very long time, Art, but we do have questions.

Part way through — towards the end of your presentation — you talked about COSCO having done some research or worked with researchers, and you’ve developed a pretty comprehensive proposal around further investment in home care and home support that showed the costs to the health care budget stabilizing and then going down.

Can you leave that? Do you have a copy of that? Can you show us that, and leave that with us? I think that would be very, very valuable for us.

A. Kube: Yes. I think, as a matter of fact, we sent it out to all the…. I have it here.

J. Darcy (Deputy Chair): You have it. Wonderful. Thank you so much, and keep on pushing.

B. Routley: Art, it’s always a joy to listen to you. Your group is doing good work.

I wondered about the situation in Denmark. You pointed out that that’s the ideal. You also talked about taxation. Do you have any ideas on how we actually achieve that? Have you looked at funding models on how to get there from here?

A. Kube: Yeah. As a matter of fact, I have that in here too — a comparison of what the Danes spend in terms of the gross national product and what we spend, for instance, on home support, on long-term care and so on and so forth. These are catalogued. At the United Nations, the WHO is really doing very good work in that particular area. However, there’s a real vacuum in Canada in terms of research in that particular area.

L. Larson (Chair): Thank you, Art. We’ll get the paperwork from you. It’ll save us having to look it up, as you already have that.

D. Barnett: I’m a senior, so I can relate to everything you’re talking about. I’ve been a senior for quite a few years.

The thing that has always been a thorn in my side is the financial elder abuse. I have seen it. I have worked with seniors where I live, who have struggled with this. Do you have any solutions to this financial abuse?

I know I have done some checking, and there is a place in the United States. I’ve seen it happen where a senior will have a home that is paid for, that is a great financial asset, and their children will come along and somehow get that home signed over to them. They sell it, all of a sudden the money disappears, and that senior is left in a very terrible state.

D. Barnett: There’s a place in the States — and I can’t remember where it is — that, should this happen, if you have an asset as a senior, then for five years after that asset is sold, the funds from that particular asset have to stay in a trust or whatever it is for the senior, not to be used by anyone else. I just wondered if there were any models that you’ve heard of that could protect our seniors more from this financial elder abuse.

A. Kube: Well, you listened to Joanne just before our presentation. We work with Joanne.

I think that in many instances seniors trust their family members. When the pressure is so great on the family members, they act. They might talk a good game, but the pressure just forces them to take…. It doesn’t force them, but it’s just an easier way out.

We basically offer programs where we talk about the question of giving the power of attorney. Too many seniors give it too willingly and don’t have at least two or three people to act so that not one person can take that. We have a good number of cases where assets were sold from underneath people. Again, most instances were family members or people who were very, very close to them for a long time. They sort of felt that when the person passed away, they had a right to these assets — which they don’t. Yes, that’s a major problem.

Again, right now, the province has set up the Council to Reduce Elder Abuse, which unfortunately doesn’t have too many seniors on it. That’s another thing I think the committee should push, to make sure that seniors who have experiences and who other seniors trust should really participate in the formation of policies and programs. You know, just one senior, to be able to say: “Well, yeah, we’re represented….” Seniors aren’t represented if it’s just one or two seniors in a committee of 25 people.

L. Larson (Chair): So, Art, there was somebody, one of your executives, that wanted to speak.

M. Grewal: My name is Mohinder Grewal. Art is my younger brother, by the way. I’ve known Art for a very, very long time. I’m on the executive of the COSCO. I represent the Metro Vancouver Cross-Cultural Seniors Network society.

I was going to address the question of financial abuse, not at the level that you mentioned — protecting assets. We are right in the process of having a project for awareness and education of cross-cultural seniors of how to protect their money, how to protect their assets, how to avoid being financially abused — just financially abused, not all the other abuse.
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I actually had a meeting with Vancity — partnering with us. We are starting with two languages, Chinese and Punjabi. I’m taking on, at the moment…. We’re starting with Punjabi in more detail.

We are going to go to all the existing seniors South Asian groups in Metro Vancouver and give them this educational series presented by a senior staff of Vancity at their own place of meeting and at their own time of meeting. It will be free, and we will provide them some refreshments, some healthy food.

I already got thick material delivered to me in Punjabi and English to edit the translation. We are thinking of about 25 seniors groups that we know of, small and large. Some of them are larger — 200 to 300 people meeting in one of them — the Guru Nanak Sikh Temple in Surrey. The other one is the Sunset Community Centre.

Anyhow, we are giving education. We hope the same model, once we are successful in the next few months, could be used in the Chinese language. Then we’re looking at Vietnamese and the Hispanic language.

L. Larson (Chair): Thank you. If you could leave us some information, I would love to have that. I live in the South Okanagan, and I have a very high population of Indo-Canadian people — a huge population. I try to get everything translated into more than one language. Once you’ve done this first one, I would be very, very interested in being able to get that. Certainly, I think it’s a wonderful initiative. Good for you for doing that.

M. Grewal: The only thing is this is a translation done by Vancity at their cost. I do not know what are the restrictions on the use of that.

L. Larson (Chair): We’ll get them to share. Okay, thank you very much. I think there was a question.

Jen, did you have a question? Just quickly. This will be the last one. We’re out of time.

A. Kube: Madam Chair, I just wanted to give about one minute to the chair of our health committee.

L. Larson (Chair): Jen, are you willing to give up your question? We are out of time.

K. Jamieson: Well thank you. I think we’re incredibly lucky to have somebody like Art, who knows the history and has solutions. He’s researched all of it. He’s extremely knowledgable, so I feel quite honoured to be here with him today.

I don’t have very much to say. I would like to read into the record that COSCO currently has 82 affiliated organizations across B.C. So it’s the largest and most powerful organization of seniors in the province. It has 110,000 members. It has 38 wellness workshops that it does across the province on a continuing basis. Art has been very involved in providing these workshops over the years. He knows what seniors in the province are thinking.

When we decided to ask seniors about their personal experience, we wanted that to balance what all the experts and physicians and so on are saying. What happened and what I really want to say today is that it was a bit rushed because we understood at first that there was just a very short time frame to respond. We were delighted to get this invitation, because seniors’ voices aren’t heard.

It was the middle of summer. We didn’t get as many responses as we had hoped for, so now we’re going to just ask everybody — retired teachers, whoever, as well as all the COSCO affiliates and members — to tell us about their experience, good and bad. We’re going to allow them to talk about anything they want to talk about that’s related to health care. When you do surveys and so on, you select the questions. Same with polls. This is a way to uncover things that we won’t know about otherwise and to give seniors a voice.

People are very excited about this. I’m hoping that this committee will then receive these additional stories, experiences. But I also would support Art in that I think additional home care and home support service are absolutely essential. Right now it almost feels like a charity, and it’s a public good that’s going to save the system billions of dollars — according to the Canadian Medical Association, anyway.

L. Larson (Chair): We totally agree with you. It’s frustrating when you know the changes that need to be made and that there is a process involved in doing it. Unfortunately, it never moves fast enough to satisfy us. But we are aware of it, and it is a priority for us.

Thank you very much, both of you, for being here. Art, whatever literature you’ve got you could leave with Susan, and she’ll make sure it’s distributed to all of us.

A. Kube: I wonder if the committee is going to have the ability to hear from Margaret Penning from Victoria and Dr. Neena Chappell. They have written the most succinct proposal, most likely, dealing with seniors health.
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L. Larson (Chair): Art, they’re on our list. They have been invited to speak, but they wanted to come later in our process. But they have been invited to present to us.

Thank you, all of you from the executive that came and gave your time up this morning. We really appreciate your being here.

L. Larson (Chair): All right. Thank you very much, Dr. Hawley, for giving us this little bit of extra time. Hopefully, because we have two issues that you’re going to cover, we will have enough time to cover both of them comfortably and do questions as well.

I’m going to turn the microphone over to you and let you introduce yourself and the topic that you’re bringing to the table.

My name is Pippa Hawley. I’m originally from England. I came out to Canada in 1990, having spent five years, actually, in New Zealand prior to that doing internal medicine training. I came to do HIV research with Julio Montaner at the Centre for Excellence in HIV care. Then we kind of got stuck in Canada because of family reasons. We had a child that died and another one that was in hospital for a long time, so I was kind of stuck in Canada and then did internal medicine training in order to be able to work, to be able to stay in the country.

I started the program at the B.C. Cancer Agency in 1997 for pain and symptom management in palliative care where none existed before. It has grown quite big now. I’m still its medical leader provincially. I also am the division head for UBC for palliative care. I do Cancer Agency Tuesdays, Wednesdays and Thursdays, and I do UBC Mondays and Fridays, and I’m on call six days a week. I’m very involved in both of these areas equally.

What I’m hoping to do with this time we have together is…. I’m not going to talk at you, not even for 30 minutes, because one of the most important principles of adult learning is that you don’t teach anybody anything just by talking at them. I’m hoping this will be kind of an interactive thing and I can hear a little bit about what you want to know.

I mean, this is kind of a really weird situation, and not having any idea of what you want to hear from me, I’ve come with some prepared handouts which have some of the core information that might be useful to reference during the discussion. But I’m really going to be taking cues from you as to what you would like me to help you with in trying to figure out, I guess, how you fix the health care systems to be able to deal with the problems that you’re all aware we’re facing.

I don’t know what any of your backgrounds are either. Is anyone here a doctor?

I don’t have to ask you whether you’re involved in caring for loved ones who are approaching end of life, because you’re all in the demographic that it’s going to be either your parents or even friends that are a little older. It’s very, very personal to everybody. I don’t have to tell you that.

I thought I’d perhaps start with the division stuff, if that’s okay. You are all aware of the minister’s commitment to doubling the number of hospice spaces — it started out as beds — by 2020. I’m involved with the provincial end-of-life-care committee, so I’m very much aware of all of the data that’s been extracted recently.

Are you aware of the population-based needs assessment that’s recently been done by your committee? Blank looks. No? Yes?

L. Larson (Chair): Well, not that it wouldn’t have gone across our desk, but whether we would have remembered what was in it….

P. Hawley: Okay. Perhaps I’ll just start off by letting you know what this committee has achieved, which is actually really laudable. It’s excellent. It’s the most positive thing I’ve seen in all the time I’ve been doing palliative care in terms of system change. They should be congratulated for doing the work.

Essentially, what they did was took Minister Lake’s commitment to doubling the spaces — which I think was an off-the-cuff remark; it was very ill-considered — and seized the opportunity. Actually, if you look at it, maybe it wasn’t quite so ill-conceived after all.

When you actually look at the numbers, the demographics of our population with the aging, with the increase in people dying from chronic illnesses, 89 percent of people, we know now, in 2012 died from chronic illnesses in which death was the inevitable outcome. It wasn’t something where it was: could be, could not. This was clearly predictable that people were going to die. So 89 percent, and that’s a hell of a lot of cost to the health care system.
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Continuing with normal, trying to care for these patients, is not really tenable. The numbers as the baby boomers come through…. It’s going to overwhelm the health care system unless we do things profoundly differently. I guess that’s why you’re doing all this.

They’d actually looked at the demographics, and they’d drilled down even to small communities. They’ve divided it up according to metro, urban, rural, suburb and all the different health authorities.

They know what people die of, they know where they die, and they know how much contact with the health care system they’ve had in all those different places — like the emergency room, their doctor’s office, the hospices, the acute care hospitals, the residential care facilities. So we have a ton of information which was not available before, not in that way. We can actually now predict how much health care service delivery we need for people, going forward to 2020 plus.

That information has been really helpful, and it actually does look like doubling the number of hospice spaces, which includes home hospice and residential care facilities, is probably about right. where we need to go, just to be able to continue to deliver reasonable quality health care, given the constraints.

Then the problem comes down to: well, if you’re going to have double the number of beds and double the amount of funding for home care, who’s going to be delivering that?

Palliative care is going to be the care team that’s most involved because associated with approaching end of life and living with chronic illness, you have all of the suffering and the morbidity that goes along with it. The gentleman who was presenting to you before just mentioned the problem of back pain, and the family doctor gave him anti-inflammatories. People aren’t living older always well. They’re living longer, often with extreme suffering. Half of us — half of you — are going to die with dementia. This is a huge problem. One-third are going of cancer. So some will have cancer and dementia. It’s scary. It’s really, really scary.

People living with these illnesses are not going to be able to be cared for in a purely disease-modification model. We’re going to have to adopt an integrated, palliative approach to care to be able to relieve the suffering and make your voters feel happy that the health care services are what they paid for all their lives, in paying their taxes.

We have to deliver the quality as well as attempt to extend the quantity of life. If we’re going to do that, we have to train the health care professionals to have the skills to do that. The doctors are the number one part of the health care team. They’re not the only part of the health care team. Palliative care actually exemplifies that in that it’s an interdisciplinary team–based practice.

At the end of the day, you need to have the physicians at a level where they understand the issues, they have the skills and they have the competence to be able to deliver the symptom management, coordinate the advanced-care planning discussions. A lot of it’s based on prognosis. You’ve have to understand the natural history of illness and what the prognosis is, and you have to be able to use all of the services so that medical care is delivered in the best and most efficient way to your patients.

If we’re not training the doctors to be able to do that, you’re going to waste a lot money investing in beds that are not going to be well run. People aren’t going to get what they’ve paid for.

To be able to do that, you have to teach them. That’s where the Division of Palliative Care comes in. There are two people, myself and Kathryn. I’m on two days a week, and Kathryn is on 2½ days a week. We’re trying to coordinate all of the training for palliative care for UBC, which is the only medical school in our province and is the primary source of doctors. You can import some, but essentially, we have to train our own. So if UBC is not training them, it’s not going to happen.

At moment, in terms of residency positions for palliative care training, it’s a one-year program. We have three per year. Three per year does not even come close to replacing retirements, when you look at the pool of palliative care physicians that are currently practising in our province. There are 108 physicians who identify themselves as palliative care physicians, where a majority of their practice is palliative care. It’s often mixed with other things. Some of them are also providing family medicine. Some of them are providing internal medicine, cardiology, respirology — that kind of thing.

If you add up the FTEs that they’re doing, the full-time-equivalents, there are 45. So it’s 45 full-time-equivalents for the whole province. And this is good data. This is data that was derived from a national survey which had lots of funding from the Canadian Partnership Against Cancer. It went to all of the health authorities. They looked at billing. They looked at codes. They looked at all of the facilities and looked at who were the attending physicians. So this is good, accurate data: 45 for the whole province.

If we are going to double the number of hospice spaces, the minimum number of FTEs we’re going to need more of is 45, okay? At the moment there are 108 doctors providing that, so you really need to almost double that, to train twice the number of doctors. That’s partly because we’re encouraging people to incorporate palliative care into their practice, so they’re going to be, of necessity, doing it part-time and also because of the demographics in that many of our newly trained physicians are young women, who want to have families and tend to choose to practise part-time. We also have to allow for wastage, in that we always lose physicians to other provinces.

Basically, the two points that I’ve made in my little handout, take-home message is that we really need to…. If you look on the back side of that little handout, first of all we need to increase the number of residency training
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positions. We need to go from three a year to six a year, and it’s $100,000 a year a year per resident. So $300,000 a year would fix the problem of supply.

Recruitment and retention is another issue which urgently needs to be addressed. We’re losing people to other provinces because they can earn half as much again if they go to Calgary or London or Toronto. Yes, we have a little bit of an edge because people like living in B.C. because it’s a beautiful place, but at the end of the day people have to pay their mortgages. If you make it so that practising palliative care means having to take a big hit in your income, which is currently the state, then you’re not going to have people doing it, however much you train them.

Where I work day to day, in my clinic, I have doctors that work side by side, and one of them earns $20 an hour more than the other one, because one of them is classified as a general practitioner in oncology and the other one is classified as a palliative care physician. And $20 an hour over the course of the year adds up to a hell of a lot of difference. We’re having really great difficulty recruiting to our clinics because of this fee disparity, so that really urgently needs to be fixed. I am hopeful that you can have some impact on that.

The last point I wanted to make is that the specialists are never going to be able to deal with all of the patients, even if we do end up with the 90 FTEs that we need. We’re going to be, still, having to only take the top 15 to 20 percent. At the moment it’s 15 percent or a little bit more of the people that die of expected deaths with chronic illnesses.

That still leaves us the 80 to 85 percent of people that die that are never going to be able to have contact with a palliative care specialist. Maybe they don’t need to, because their family doctors and their other doctors — like the hospitalists, general internists, surgeons, cardiologists, respirologists and nephrologists — should be able to deliver at least basic palliative care.

Unless we train them to do that, they are not going to be able to. It’s only been very recently, in the last ten years or so, that palliative care has been included in the undergraduate curriculum. It’s still not incorporated into many of the residency programs.

Family practice in B.C. does not have a mandatory palliative care rotation. In some areas, some of the programs do include it in their program, like the one in the Lower Mainland and the one in the Fraser Valley. But if you’re learning your family medicine on Vancouver Island or up in Prince George or in the Okanagan, you don’t have access to that. The training doesn’t currently exist.

You get taught by family doctors who have never been taught it. Now, some of them are excellent. Some of them have gone and taken courses, and they’ve read appropriate journals, and they’ve upskilled themselves. They’ve kind of become specialists. That’s where we’ve all kind of come from, because it’s only recently we’ve had a full specialty. But you still have this problem, kind of like the blind leading the blind.

If you want to improve the quality of your trainees, you have to have people who know what they’re doing teaching them. That means that not only do we have to currently train the people to provide the service over the next ten years, but we have to provide people to teach everybody else to provide service so that the level rises across the board.

So we’ve got a real need to not just look at the long-term needs — that sort of plateau. We have this hump we have to go over to then be able to get the savings. If I can try and just get that concept across to you that we’ve got a real knowledge deficit, and providing services requires, really, quite a major investment in knowledge acquisition and teaching if we’re going to actually solve the problem in the long run.

L. Larson (Chair): Can I get some questions for you right now, Dr. Hawley, before we go on to your next section?

M. Stilwell: Thanks, Pippa. You answered some of my questions. I was interested about the financial incentives to provide palliative care as a family physician or a general internist. Is this now a boarded specialty, palliative care, or is it a…? How does a doctor who wants to become a palliative care physician enter into the stream?

P. Hawley: At the moment there’s what’s called a conjoint program. It’s called the year of added competence. It’s the only program that exists in Canada where both the Royal College, which trains specialists, and the College of Family Physicians of Canada actually conjointly accredit the same people.

In all other training programs you either go to the GP college or you go to the specialist college. The GP college and the specialist college nationally do not work well together. There are major political issues and management issues with them, which are being resolved. They are starting to work better together.

It’s partly triggered by their refusal to work together. It’s interesting. The conjoint program, we were told, about five years ago, was not going to be allowed to proceed. They were not prepared to work together anymore.

So they forced the palliative care academic community, which I’m part of…. I’m on the national committee for specialties. I was on the working group that worked on this over the last few years. Because they decided that they were going to separate completely, they forced us to come up with a plan to have two separate programs, which we weren’t happy about.
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We have now developed what is going to be a two-year program for the royal college subspecialty. It’ll be a subspecialty with equivalent status as nephrology, cardiology, oncology, whatever. The college of family practitioners is going to continue with a one-year program, but it’s going to be dumbed down. Instead of being a year of full-time, it’s going to be a year of part-time integrated with extra family medicine.

Instead of people going their different ways and then coming together and working together in a very integrated fashion, it’s going to become GPs with an interest who are going to be probably continuing to practise as full-service family practitioners and do a bit of palliative care on the side. Then there are going to be royal college subspecialists who are going to be leading the programs, being medical directors of the palliative care units and hospices and being more involved in the teaching.

M. Stilwell: Can I just add on one question to that about the residency positions? As a person who is supposed to be helping steward taxpayer dollars, I think it’s a fair question to ask. Why do we have unemployed orthopedic surgeons when you need three spots a year? So how does…?

P. Hawley: We have no unemployed palliative care physicians. We have vacancies that have not been able to be filled.

M. Stilwell: Exactly. Can you talk a little bit about your experience? I mean, there is a manpower committee that has been at least nominally in place for a long, long time that includes government and so on to talk about the residency positions and how they will be divided up. Are you making headway? Are you getting three spots a year?

P. Hawley: No, not at this point. There has been some discussion. About a year ago I was asked to make a submission to the department of medicine. That was supposed to be used to advocate going up so that they could come up with a plan for how they divvy up the residency spots for UBC in the department of medicine. They divide it. There’s medicine, surgery, pediatrics. There’s a whole lot of different areas.

That has now been reactivated, and I’ve just received a request for another submission. I actually spent quite a bit of time the last few days working on that. It’s very interesting that now we have the information from this report where all the information came from, the blue matrix, that supported the doubling of the hospice beds. I’ve now crunched all the numbers and the figures and put it back in. Then I compared it with my estimate from a year ago, and it’s exactly the same.

M. Stilwell: Well, I’m impressed. I suspect you’re the only residency that has the kind of data you have.

P. Hawley: Yeah, I know. Rheumatology is pretty good. Rheumatology is doing very well, and they’re also…. I’m not saying that we….

P. Hawley: Yeah, but within the university and within the medical community, traditionally, some of the stronger personalities have been allowed to have more influence. It needs a bottom-up approach, which is what I’m trying to do. But there also needs to be a top-down approach in that there needs to be some direction from you guys as to how these things are prioritized. You know, we don’t need a whole lot more interventional cardiologists. We need some, but not a whole load of them.

B. Routley: Just a question. I heard a lot about the need for collaboration. Even if your wishes come true — that we double the number, or the ministers, and there’s more work done on palliative care — it sounds like with rural communities we’re going to need more training of palliative care principles to general practitioners.

I wondered if you’re already collaborating on improving the amount of time that students would get in hearing from specialists on how they can contribute to improving overall….

P. Hawley: Yes, one of my three points was that we really need to do that, but it needs to come from people that have the expertise. At the moment my job, two days a week, is not funded. The department of medicine is paying me about two-thirds of the amount of money I would make doing clinical work, but they don’t have a funding stream to pay that. I don’t know where they’re getting the money from, and I don’t think they do either.

I’ve had lots of discussion with Dr. Meneilly, who I report to as head of the department of medicine, and Dean Stuart, who is the dean of the faculty of medicine. They thought they were going to get some money from the Order of St. John when they built the hospice out on UBC campus. They thought that was going to come with funding to run operations.

That was a misunderstanding. The Order of St. John never committed to doing that, and won’t. They say that it’s university operations and that it’s up to the university to pay for that out of their budget. They have been asked to make a 4 percent budget cut across the faculty of medicine. If that’s not going to happen, they don’t have the money to be able to pay us.
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I’ve been generating money from philanthropic sources. At the moment 40 percent of my salary is coming from a grant from the Lions Gate Hospital Foundation, which is part of a commitment to setting up a training site on the North Shore. But this is not sustainable funding, and charitable foundations shouldn’t be paying bread-and-butter operating costs to run a university.

We do have a new dean coming, and we’re hoping that the new dean will be able to have some ability to redistribute funds within the university so that this program can go ahead. But even if it does, me, two days a week, trying to work with all of the health authorities to make sure that all of their trainees get at least the basic core training in palliative care is still woefully inadequate.

We need to have identified people in each of the health authorities so that the trainees actually get somebody locally who’s doing it. I can do the backup. I’ve provided them with curriculum.

B. Routley: What’s frightening is that you’re describing that there’s a disincentive rather than an incentive to do the training that needs to be done, right? Wow.

P. Hawley: It’s a huge disincentive to do this, yeah. There’s also the perception in family medicine that they know how to do this perfectly well, thank you very much. So you have to be a little careful of that.

L. Larson (Chair): Yes. Thanks. We’ve burned up the first half of your time, but I do have a couple of quick more questions — which they will make very quick, the two gentlemen to my right. Then we’ll move into the other piece of your presentation, if that’s okay.

R. Lee: Thank you, Dr. Hawley. It’s a very good presentation. From the presentation we know that we have probably the leading programs in Canada. Can it be made a centre of excellence for palliative care education so that there is some federal and other university support, so that the centre could contribute to training more?

P. Hawley: Well, amongst the 45 FTEs of us, among the 108 of us in the province we do have very substantial expertise, but it’s concentrated in a very small number of individuals. There are about five of us in the province that do all the academic work. Certainly there would be a lot of potential for expansion of that.

You are aware of the Centre for Palliative Care, which had some funding that came through from Margaret MacDiarmid before Mr. Lake took over. That’s very much…. It was sort of a one-time deal, and there have been issues with how that’s integrated.

Doris Barwich is the head of that. Doris and I…. We’ve told them that they can share an office. We have a two-office facility on the grounds of the St. John Hospice. Myself and my secretary are occupying one so that Doris and her assistant can occupy the other, because we really want to work closely together.

Unfortunately, that has not been able to happen, because the ministry, in their wisdom, decided to have the funding go through an entity called the Institute for Health Care Transformation and Sustainability, which was new. That’s not working at all. They need to be part of the university, and we have to negotiate that. That’s sort of a separate thing.

P. Hawley: If you want a national centre of excellence, we could do it. It would be lovely. But it will cost you.

L. Larson (Chair): That’s what he’s thinking — that one way to raise the profile and get funding is to create a national centre of excellence in British Columbia.

P. Hawley: The problem is that if you went too high, you would get nothing, so I’m a little nervous about that.

D. Bing: I just have a general question. I understand, from what you’ve said, that you’ve got experience with three medical systems — England, New Zealand and Canada now. Are there things that you see that we’re doing well in Canada, and are you seeing things that we’re doing poorly, compared to the other two countries, that we should be doing better?

P. Hawley: Yeah, I mean there are problems in the U.K. and in New Zealand as well. I think we share the same problems.

England started before Canada, and they made the big mistake of having most of palliative care organized through philanthropy. It was all donated money, and there wasn’t much core funding. At least with Canada we’ve had palliative medicine as an accepted part of medicine, so we’re not utterly dependent on donations.

In the U.K. a lot of hospices have had to close, because there haven’t been enough people able to donate the kind of money they’re used to. We do need to keep it out of the charities. We need to have this as taxpayers’ money. That would be probably number one.

The other one is that we’ve perhaps done a poor job in educating the public that palliative care is not about
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dying. Palliative care is about living. It’s living well with cancer. I didn’t want to spend too much time on it. But the model here, the bow-tie model, where you have survivorship as the potential outcome when you’re diagnosed with a life-threatening illness…. You need to have people aware that you can still benefit from palliative care when living with a life-threatening illness that may be curable, because it may not be.

If you wait until people are absolutely sure that they’re dying, then it’s too late. You’ve missed all the opportunity to improve their quality of life, but you’ve also missed the opportunity to have the savings. You’re not going to save any money if you just come charging in for the last three days of life. It’s not going to do anybody any good. You have to get in early, which means you have to educate people that it’s about the living, not the dying.

That’s one thing that I think perhaps in Canada we’re starting to a better job with than in the U.K. and in New Zealand.

L. Larson (Chair): Yes, the Cancer Agency. Again, I’d like to say that it’s pain and symptom management, and it’s again palliative care. We’ll just change your heading there.

The Cancer Agency. The way that it works if you get cancer is that you come in to the agency, where your family doctor or your primary specialist that your surgeon or whoever refers you to the agency. You get to see an oncologist, and then you’re told what your treatment plan is going to be. Hopefully, it’s presented, and then you have a choice of whether you want it or not, and you have some discretion as to how it goes. Essentially, they say: “This is the deal.”

At some point in your disease trajectory, the oncologist says: “This isn’t going well. We need to think about the fact that you’re not going to be cured.” People then often get referred to palliative care. The problem with that is that often that decision is made very, very late in the course of illness.

The idea of the bow-tie model is particularly important in a cancer setting. At the moment we have patients that are sometimes referred to us…. Literally, they come to an outpatient appointment with us, and we have to admit them to hospital, and they’re dead in a week. We’re just not able to reach everybody early enough in the course of their illness to be able to have an impact.

It’s partly because we don’t have enough funding within the agency that’s been allocated to the pain and symptom management/palliative care program for us to be able to have a very short wait-list. I don’t think it’s acceptable to have any wait-list for somebody with an acute pain crisis from cancer. If you don’t deal with it, they go to emergency, and they end up in hospital. So you can’t have a wait-list.

We have to be able to have enough service capability there to accommodate the urgent referrals as well as the planned referrals for when people are thinking that they need a little bit of help, maybe, with…. It could be just nausea management during chemotherapy that’s curative. It could be post-surgical pain syndrome — someone that’s had a nephrectomy for a kidney cancer and is cured from the kidney cancer, but they have a lot of problem with pain from the surgery. They need to get help with that.

The GPs don’t know how to do this, on the whole. I’m sure Dr. Stilwell will affirm this. They give people Tylenol 3s. They get constipated. Some of them end up not taking it because of the intolerance. Some of them actually harm themselves by overdosing on the Tyenol, not realizing that there’s a limit there.

On the whole, pain management in family medicine is very patchy. Some people do it very well, but the majority — more than half — do it very poorly. We need to be able to educate people more on how to do that.

The way to do that, I think, is integrating the palliative approach to care into the cancer generally, just like we do in other conditions. We really need to do that in-house. Then we can transfer care back to the family doctors with a plan. We see people, on average, 2.3 times in our consultant service. We’re not taking them on and caring for them for the rest of their lives. We’re not assuming care. We see them. We fix whatever is fixable.

We come up with a treatment plan, and then it’s back to the GP. The GP knows they can come back and say: “Hey, what we did before has worked for six months, but it’s not working now. Can you help me out again?” It’s very much a consultative service.

Considering that more people die from cancer than any of these other conditions like heart disease, strokes, etc., you still have to think of cancer as being where your meat is, in terms of the budget. You’ve got to care for those people as well as you possibly can, because they’re going to be consuming the most resources. If we can expand our ability to cater to the need, then it will have huge savings down the line.

L. Larson (Chair): I’ve got just a question before…. Because we want to ask you questions….

P. Hawley: Yeah. I just have one quick, one particular…. I have four points which I’m duty-bound to….

L. Larson (Chair): Just on the one that you’ve just mentioned, though, I just want to ask you…. One of the things that I’ve read a lot about too is: how good a job are we doing of actually up front telling people the realities of their life expectancy when they, you know, and letting them make the decision based on the reality?

Often, the expectation…. They might think: “Oh, okay. I’ve got 20 years.” The reality is that they’ve got six months. We spend an awful lot of money in the health care system trying to push that life expectancy out there without….

I’m not sure that we have the proper skill set to tell people — the doctors, whoever is first talking to them — to actually be able to open that conversation that this is a life-ending situation that you’re in and maybe your choice is not to have surgery, chemo and all the rest of it. How good are we at that?

P. Hawley: There are three parts to that. The first part is that the doctors have to have the knowledge, which means they have to be taught, which means that you have to have people other than oncologists teaching them. Some oncologists do it well, but in general, it’s not a competence that they have. Number one, you have to have palliative care specialists involved in the education programs, so that goes back to the division.

Number two. You have to have oncologists that have the communication skills to be able to do that, and that is…. Some people can naturally have good communication skills, but it’s not a given, and we need to invest in communication training. That has to start in undergrad. You can’t make somebody a good communicator in the last weeks of their program and in a two-hour half-day. You know, that’s not going to work.

I’ve probably forgotten what the third one was now. The third one was prognostication — having ability to be able to understand the disease process. Within oncology, that’s a moving target. There are people who used to have an inevitably short life expectancy that would not benefit from treatment. Now people are living way, way longer.

I have a patient that you probably have heard about in the newspapers — Trish — that was heavily reported across the province and worldwide recently. Trish has an advanced colorectal cancer, and we’ve been following her, doing good pain and symptom management, good integrated care, because she self-referred early, because she’s a very bright woman.

She did a thing called the POG study, where they did her personalized onco-genomic testing. They found that her particular cancer, her tumour cells, had a receptor on them for a particular blood pressure pill, so that she’s on this blood pressure pill, and within five weeks they repeated her scan, and she had no detectable cancer. You know, this is somebody who had a life expectancy of three months. She now has no disease, no cancer.

The goal posts are shifting all the time. I saw somebody in my clinic yesterday who’s now on her seventh kind of palliative chemotherapy for metastatic lung cancer. Up until ten years ago nobody was getting chemo for metastatic lung cancer, and they were all dead in a year. I mean, this lady has been going for five years already, and she looks great.

L. Larson (Chair): But what’s her quality of life during this process? Was that pretty good?

P. Hawley: Her quality of life has actually been pretty darn good. I mean, it’s coming to an end now.

L. Larson (Chair): Okay, because that’s my concern, you know? It’s great that there is the potential, but if we make it so that they can’t get out of their chair for five years, what have we really done for their life? You know?

P. Hawley: Yeah. So these are the questions that the oncologists and the palliative care physicians that I work with in the Cancer Agency…. We try to help the patients with it as much as we can.

P. Hawley: Okay. Well, the first one was the integration. I’ve talked about that. The second was support for discussion about goals of care for patients, which we just raised.

We do have tools for that — for advanced care planning — but we need to have a provincial mechanism for access to them. It’s not a general thing. It’s a very specific thing. If this comes up in other areas, I’m sure other people would be talking to you about it. If someone’s got an advanced care directive, and they’ve got it in a safety deposit box in TD Bank, it’s no use to them when they drop dead on the crosswalk outside the bank. Nobody knows where it is, and they can’t read it, so they end up in ICU. We need to have some kind of system whereby the advanced directives are retrievable provincially by the emergency medical teams.

The third point was transitioning care to the community. I think you’re probably going to hear about that a lot from other people, so I’m not going to emphasize it too much, other than to say it’s really important.

We had funding cut for our home care liaison nurse about ten, 15 years ago at the Cancer Agency. When I first started working there in ’97, we had a home care liaison nurse. That position was deleted. Now each nurse has to do their own home care liaison.
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We deal with four provincial health authorities, as a provincial organization. They don’t know who to call. You can’t find out who to call by going on the Internet. It becomes who you know. We’re constantly dealing with people phoning us and saying: “Can you do this referral to home care?”

The oncologists and the oncology nurses are perfectly capable of doing it if they can find this information out. Having a home care liaison service for the Cancer Agency would be huge, or some kind of process so that we can actually invest time in providing the information in a way that they can retrieve it. That’s something that desperately needs doing.

The last one is the minimally invasive palliative procedures, which is a much more sort of technical topic, but I think it is worthwhile spending just a couple of minutes on.

If you get cancer — say, if you have prostate cancer — and you get a metastasis in your lumbar spine, the bone gets weak, and it can collapse. Then you get a fracture, and your back goes like this. This is really painful. It’s agony for about at least six weeks, probably more, just from osteoporosis. With cancer, when it doesn’t heal up, you’re looking at three months of misery.

A lot of these people end up in hospital. They end up bent right over. They end up having sometimes to have expensive interventions like intrathecal pumps for pain management installed at great expense, and cost to them as well, because they have to have an operation to put it in and they have to have them refilled.

It’s a really miserable condition to have. It’s happening more and more and more, especially as people live to be older. Their skeletons are not staying strong. It may be that their hearts and lungs and their livers and kidneys are working older, but people’s skeletons don’t work older. So we have a lot of people who are literally falling apart in their skeleton.

There’s this procedure called cementoplasty, which is relatively new. We’re a world leader in this, in our own city. We’re very fortunate to have Peter Munk here.

Peter has developed a program here where he goes into the spine with a needle under local anesthetic and squirts cement into the fracture or into the metastasis. If it’s cancer-related, he kills the cancer first with a thing called a cryoprobe, where they basically freeze it and then takes the cryoprobe out and fills the hole with cement.

It essentially makes it pain free. So you can have somebody who’s been in bed for two months, unable to turn, requiring a catheter, feeding, full-time attendant — family have to take time off work. You can restore them to being able to take the dog for a walk. It’s a really spectacular procedure.

It’s about $1,000 for cryoprobe — about $500 per person for everything else. But if you think of $1,500 for a procedure, and it saves months in hospital…. This is a program which is new, meaning in the last ten years. It’s phenomenally effective, and it has potential for massive cost savings.

The problem is that it’s not currently funded, so there’s no protected time for it. The cryoprobes, which are used for the cancer patients — there was some money that was donated by a grateful patient. We have two months left on them, and then they’re gone. We have no means of buying more cryoprobes.

The interventional radiology program at VGH has been supporting with all of the other parts of it. They’re providing the anesthesia and the disposables and paying the radiologist. But we don’t have the money to buy the cryoprobes.

Dr. Munk and his team…. People come from all over the world to train under him. We don’t have a proper process for them to even book patients. They’re doing them at two in the morning when there’s space from a cancellation, and they get bumped all the time. So it really needs proper organization.

S. Hammell: Is there not a process through which new and innovative and cost-saving procedures, when found or invented, go up some chain of command to be looked at quickly and assessed?

P. Hawley: I’ve done at least five proposals in the last five years, and I’ve gotten nowhere. The last one I did was the Specialist Services Committee. Recently the B.C. Medical Association, now called Doctors of B.C., were allocated some funds to go towards specialist services, and there was a process of looking at applications. I went through that, and it was useless. The respondent hadn’t even read it. The whole process was flawed.

I don’t care what systems are set up. There may be a system, but it isn’t working. We’re not getting anywhere. VGH are so taxed for…. They don’t have any spare money. They see us as something which is extra.

It’s this big picture. That’s what I’m saying. I can advocate all the time for these little things, but people say: “Oh, they’re just asking for more money for this.” They’re not seeing the big picture — this is how much we’re saving down the line — because it’s siloed. VGH radiology department has a budget, and they have to keep everything within a certain budget. If they save money, they don’t benefit from it, because there are so many other people involved.

Not having to build another hospital to accommodate all the people that need to go to emergency for pain management or palliative care unit beds — they don’t see those savings down the line. That’s why you need to have senior levels of management understanding the big picture of these things. I can’t get at them. I’m stuck at the level of the department head.
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S. Hammell: Your applications, or your description of this procedure, would only go to your department head to be…? Is there not…?

P. Hawley: The Cancer Agency says: “Well, it’s done at VGH so they should pay for it, even though it’s our patients that we’re referring for it.” The Cancer Agency does cover the cost of some particular, specialized things that do happen at VGH, because they have the skills.

We don’t have an operating room, properly, at the Cancer Agency. We don’t have doctors in-house at night. If someone gets sick at night in the Cancer Agency, they have to call an ambulance. It’s not a proper hospital, so we don’t have all of the services that you need to provide those kinds of services.

You have to use the regional health authority facilities to provide those services. The regional health authorities say: “Oh, they’re cancer patients. The Cancer Agency should pay for it.” The Cancer Agency says: “No, you guys should pay for it.” They just fight, and then you end up with nobody paying for it.

J. Darcy (Deputy Chair): Fascinating presentation. I wanted to zero in on one piece that you mention in particular. Because we’ve heard a lot about the B.C. Cancer Agency, we know a lot about oncologists, but we don’t hear a lot about the other pieces of what go on there.

You spoke very powerfully about people urgently in need of treatment for pain and not able to access it. Can you talk a bit more about what we’re dealing with right now in terms of…?

J. Darcy (Deputy Chair): Numbers, and you talked about shortages of trained palliative care specialists, but what about as far as treatment of pain? What are we looking at there? What do we need there?

P. Hawley: People. You need people who are paid to be there who have the skills. We need to train them, and we need to pay them so that they stay.

J. Darcy (Deputy Chair): Is that the same…? When you talked about the shortage of palliative care specialists….

P. Hawley: This is them. Yes. Abbotsford Cancer Centre at the moment has a pain and symptom management clinic which is being run by a retired GP who has never had any training in pain and symptom management. He’s a lovely guy, and he’s doing the best he can because there’s no one else to do it, but it’s not adequate.

It’s substandard care, and it’s not fair on the poor people of the Fraser Valley that they get no care. There’s huge opiophobia through the Fraser Valley. You can’t get even a Tylenol 3 out of your GP.

This gentlemen here that says he was given an anti-inflammatory and then he nearly died — he probably had kidney failure or a GI bleed, and it was completely preventable because he should have access to opioids.

There are problems with opioid therapy, but they’re a darn sight safer in the elderly than anti-inflammatories. The GPs were never taught about this in medical school. You’ve got to retrofit it if you’re going to that.

It’s really hard to retrofit a GP when they’ve been in practice for many years. They do things the way they do them because that’s the way they do them. To change practice, you have to really change the paradigm. Dr. Stilwell, I’m sure, will reinforce that.

It’s really tough to get education to GPs because they’re so busy, and they’re frightened of the college. They don’t know how to do it, so they just don’t do it. It ends up with people living in pain.

D. Bing: I just wondered. When you have a new medical procedure such as cementoplasty that’s not covered by MSP, is it possible for the patient to pay for that service, to get that done?

P. Hawley: I’m not sure how you would do that in terms of a mechanism, but I would say that that would be very unfair. I would not approve of that.

Most of these people are not able to work. A lot of them haven’t got health insurance. They are on the B.C. palliative drug benefit, which is covering the costs of their medications. To me, it would be sensible…. One way to look at it is that the benefits program would pay for the procedures so that they didn’t have to pay for all the rest. That might be one way of looking at it.

But we can’t even get to make changes with the benefits program, because there’s hardly anybody home. I don’t know who’s running it, but it’s really difficult to get any information out of anybody out of that.

D. Bing: It seems to be self-defeating, though, to have no one get treatment because it’s not covered than if the person was able to do it themselves.

P. Hawley: I’m not aware of any private facilities where you can get cementoplasty. They don’t do it at the Cambie surgical clinic or anything.

M. Stilwell: I quickly want to reiterate that I think the consequences you’re describing of when you see these
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articles in the newspaper about people being overdrugged and so on…. There is no incentive for a family physician to take the time and then get involved with opioid therapy. It’s a non-winner. As you say, fear of the college….

M. Stilwell: Yeah. People don’t have time to fight ignorance. This is a high-level policy guideline.

I want to ask quickly about self-referral. Can people effectively self-refer? Or was the person we were talking about an effective navigator who managed…?

P. Hawley: Yeah, we take them from family members, patients, social workers, nurses, doctors, GPs, whoever — open door. They can just walk in, if they want.

L. Larson (Chair): Thank you very much, Dr. Hawley. Really interesting. We probably should have you sit in front of us for about four or five hours. I’m sure we will invite you back at some point when we’re getting to the point where we’re making some very specific recommendations.

L. Larson (Chair): Good morning, Barbara. Nice to see you again. It’s always a pleasure.

L. Larson (Chair): What I’ll do is turn this over to you, ask you to introduce yourself and Rebecca and then let you go ahead. And give us some time for some questions.

B. Lindsay: Lovely. Well, thank you so much for having us. Thank you so much for the invitation today.

With me today is Rebecca Morris. She’s the provincial coordinator for advocacy and public policy. I’m Barbara Lindsay, the director of advocacy and public policy at the Alzheimer Society of B.C. We’re really happy to be here.

Many of you have heard us speak before about the rising rates of dementia in B.C. There are 70,000 people with dementia in B.C. at this time. Of that, 10,000 people are living with this disease under the age of 65. That means that they’re in their 60s and 50s and even their 40s. You also might be aware that we’re expecting the disease numbers to double in less than a generation, so 70,000 people now and 177,000 by 2030.

You know that many people who live with this disease have family and friends and caregivers and communities who are supporting them. The people are struggling with challenges that accompany the disease. Caregiving is a challenging job. It’s sometimes rewarding, of course, but it also results in detrimental social and physical and psychological consequences. I know that some of you know this from personal experience.

I’ve been with the society for 20 years. It’s amazing to think. There are lots of great things that have happened in the interim. Many of you have been behind those advances, and we really appreciate that.

As an example, when I first started, we didn’t have a registry for dementia. Now we have a registry so that everyone who was diagnosed…. Where the doctor has made a billing two times in a year, if you’re between the ages of 45 and however old, then you will be named in the registry. We’re getting a better sense of the numbers of people with dementia in the province. That’s an important thing.

We have the ADTI, the Alzheimer disease therapeutic initiative, which was really an important way for people with dementia to get access to the medications which they didn’t otherwise because their medications are not on the formulary. That was a really big thing for all the families facing this disease.

Then the other big thing for us is to get funding for First Link. First Link is that program that allows people to get connected to the society as soon as the doctor diagnoses them. With their permission, the doctor then connects them to the society. That’s significant. We’ve been able to expand that program around the province now with funding from the ministry. That’s big.

You’ve been some of the biggest champions for change and improvement for people with dementia. But there is still an area we can work on, and that’s end-of-life care. Today we really wanted to talk about that piece and the need for a plan to address end-of-life care for people with dementia.

Our health care system doesn’t always do a good job to acknowledge that it’s a life-limiting condition. We hear so often from people who work in care facilities, telling us that families are shocked that a person with dementia that they’re caring for is going to die with this disease.

A lot of families aren’t coming to the Alzheimer Society. People who have…. We’ve talked to some health care pro-
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viders in the system who have said that if they’ve come through First Link to the society, the health care providers can tell they know more about the disease, and then they can be better prepared.

Still, there are many people who don’t come to the society, and they don’t know that. In other words, there are 70,000 people who are living with this progressive, terminal disease. But unlike cancer, there are no remission rates or survival statistics.

All we can do is really provide support for people to live as well as possible for as long as possible and to have a meaningful end of life and a dignified end of life.

R. Morris: I want you to imagine for a second that you’re caring for somebody who has dementia, and that person is at the end of their life. They haven’t been able to communicate verbally for a long time. The care provider comes in, and they provide you with this lovely end-of-life kind of care kit.

In that kit, perhaps, there’s some scented hand cream, a book of inspirational quotes from the New Testament and a CD player with a CD of classical music. Perhaps that’s a comforting thing for you. Perhaps that’s a comforting thing for the person you’re caring for. But perhaps you know that that person has never liked classical music. They’ve always been more of a rock ’n’ roll person. Perhaps you know that that particular scent makes that person’s stomach just churn, or perhaps you know that they’re Jewish.

Like all people at end of life, people with dementia need a customized approach to the end of their lives, even when they can’t communicate verbally. End-of-life care can really be improved through two key paradigm shifts. The first is supporting a palliative model of care in residential care facilities that’s responsive to the unique needs of people with dementia.

There are areas in the health care system that are already doing this with unbelievable innovation and expertise. Where that’s done, where care is exemplary, it has the following characteristics.

The person with dementia is treated as an individual. Their preferences are valued.

People with dementia, their families and their caregivers are regarded as the experts on living with this disease, and their voices are integrated with system change and in policy creation.

People with dementia and their families are encouraged to be a part of the health care team and to be involved in planning and decision-making about the care that they’re receiving, about all care they’re receiving.

Approaches are sensitive to that individual’s personal, cultural and spiritual values, beliefs and practices.

And there’s support for the family, both before the death happens and after the death happens.

If these characteristics represent really good care, you see why something as simple as an end-of-life care basket can be a really good representation of how a person’s end-of-life experience can really be made by the little details.

B. Lindsay: Well, early personal planning is integral to quality care. You’ve probably heard other people speak to this issue. I was a staff lawyer on the community-based law reform project to bring representation agreements, to improve powers of attorney and to look at the best ways forward to support people who are facing the inability to speak for themselves.

It’s really great that we’ve got tools like representation agreements and powers of attorney for people to put their wishes in place in advance, but people really need to know about them, and they really need to have access to that information. There are attempts. We have materials at the Alzheimer’s Society, and we really do encourage people to take the opportunity, while they’re well and still able to make those decisions and have the ability to do so, to put those plans in place and to communicate that with the people that care about them.

This gives a person with dementia and the family so much more confidence about end of life — if you actually have put your plans in place, especially if you’ve had the right directions about what to do. There’s a lot of misunderstanding about that.

An early diagnosis is a key, right? You have to have a diagnosis before you know to pay attention to the issue. We know that for a lot of people, it’s still not something that happens as readily as it could be and should be.

Part of the reason is that doctors don’t have that education in their primary…. The speaker before us spoke about that. There are so many things that have happened since doctors have taken their first education, and there’s so many things to cram in their minds.

Certainly, dementia. We’ve understood from some of the doctors we’ve spoken to that dementia occupies what may be a few hours of their education. It’s hard to imagine that you can take that and transfer that to your family easily, right? You do need some continuing education on the issue.

R. Morris: I worked as a first link coordinator in one of our 19 local resource centres for about a year and a half before coming to this position at the society, and it was by no means unusual that people would come into our office and wouldn’t know that they were living with a disease that’s essentially terminal.

One experience that I really won’t soon forget was with a caregiver. This particular caregiver was an English-as-a-second language speaker. Through one of our conversations it started to become clear to me that it wasn’t explained well that his mother was living with a terminal disease, that this was progressive and would continue to get worse.
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I remember him asking me: “You mean my mom’s not going to get better?” I remember that question just kind of hanging in the air for a little while, and this grown man just broke down in tears. He was sobbing. That really stuck with me, even though it wasn’t necessarily unusual. In that office I probably had the experience of telling dozens of people that they were dying.

We can do better than that. We can change this with better information and support for physicians. We know that physicians don’t always feel like there’s a lot they can give a person who’s diagnosed with dementia. Really, there are the pieces like advanced planning, like Barbara spoke to, and like the support, information and education out there.

We’ve done focus groups across the province with people with dementia, and they consistently tell us a few things. They tell us that they need support to talk to their caregivers about the kind of end-of-life care that they want as soon as they’re diagnosed. We know, they tell us, that they need support to have important conversations with their health care providers. They tell us that they need to know about the support, education and information that’s out there through programs like the Alzheimer Society of B.C.’s First Link program.

Finally, they tell us that they need help to understand what’s going to happen to them at end of life so that they can reduce their own stress and deal with their anticipatory grief.

B. Lindsay: Another shift that’s needed is to push to expand training and current notions of end-of-life care to include people with dementia and their families as recipients of palliative approaches.

We have a colleague whose dad has recently died with dementia, and when she went to the care facility close to his death, there was the yellow “Do not cross” tape across his room. This isn’t because staff are mean. They think, “Let’s not have people visiting him,” some of the other residents visiting his room, while he’s so close to death. Yet for her, and for him, it was a stark reality to think: “We can’t go near my dad when he’s ill.”

We just need to think about what the right palliative approach is, and we all need education and understanding about how to do it. It’s possible. We just need to think about it. Palliative approaches are really thought a lot more for cancer than for people with dementia. We just need to increase that and bring dementia into that fold.

Health care providers really do benefit from up-to-date education and information on dementia and end of life. The society would like to see educational curriculum for health care providers revised to include relevant information about providing quality end of life to include people with dementia.

The society notes that care aides provide the majority of hands-on care and that there’s an urgent need for this group of care providers to receive that education about end-of-life care. We do have an education program. Care aides and all of the people who work in health care — providers — who take it say how much they value it, learning new strategies to approach people with dementia. That includes a better understanding that that is a life-limiting disease.

We think that the development of the following tools could help in ensuring quality end-of-life care.

Many people with dementia have pain, but it’s often not adequately understood because they can’t communicate what that pain is. It might come in a different way. It could be that it’s expressed in a different way. One occupational therapist was telling me this story. She was called because this man was acting out, and it was very difficult for the staff to look after him. She said: “I adjusted the feet for his wheelchair. I adjusted the back of it. I thought maybe I should change his clothing because it’s too restrictive.”

Then she said: “I thought, okay, maybe he needs to be changed.” In the process of doing that, he got off the wheelchair, and she found, under the cushion, a shoe. She said: “He’s been sitting on that wheelchair for over 12 hours with a shoe underneath him. He’s reaching out to people, and that’s perceived as not behaving well.” She said: “I was focusing on the wrong thing the whole time.”

We just have to think a little bit differently for people with dementia who can’t say: “I’m feeling pain.” They’re going to express it in a different way.

Aggressive care at the end of life is rarely the best care for people with dementia. Health care providers and families need to understand information about why certain kinds of care are not good options for people with dementia.

I was on the ethics committee with a number of care facilities in the Fraser Valley. They expressed this confusion that sometimes a person is at the end of life on a weekend, on a Saturday evening. They think: “Should we send them to the hospital, or should we be really keeping them here? What’s the best thing?”

The family might not be available, and the doctor is saying to the nurse: “You guys are the ones on the ground. You need to say what’s the right thing to do.” They don’t always think to look at the file to see if the representation agreement is there. If it is, does it actually help them to understand?

Families are stressed as well. They don’t normally know: should I send to the hospital for aid or not? They’ve got pneumonia, but what will happen at the hospital? Is that the right thing?

These are challenging. There are ethical aspects to it, but when we have conversations with each other, we can solve this issue, because I think everyone has the right attitude about it. They want to do the right thing. Ignorance can be addressed by education and policies, and conversations are important.
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We also need assessment tools that are sensitive to the needs of people with dementia, because they’re not going to be able to communicate in the same way as people with cancer have been able to, for example. We need support for families. The First Link program is a really big way for that to start.

Today Rebecca and I have focused on end-of-life care in that sort of traditional sense, but right from the time that someone receives a diagnosis, they should receive that palliative approach, because we know that it is a terminal illness. Many of the other areas outlined in our written submission to you support that approach.

We’d like to take a moment to outline these in addition to our recommendations to support the palliative model of care in residential care facilities that’s responsive to the unique needs of people with dementia. We want to expand training and current notions of end-of-life care to include people with dementia. We hope these additional recommendations will support the society’s B.C. dementia-friendly communities initiative to build inclusive and accessible communities across B.C. so that people are understanding how to support people with dementia all through that disease.

We also are seeking your support for a program something like Finding Your Way, which really is helping people to understand how to respond to wandering. We also ask you to support the implementation of the dementia action plan. The Ministry of Health is going to be introducing that fairly soon, we think. We’ve been involved in the development of that document, so we’re quite excited to see the attention that would be brought by this important policy document.

Finally, we ask you to provide ongoing support for the society for our First Link program, because an educated family means they’re a stronger partner in the health care delivery to people with dementia if they are understanding what this disease is. Your support for First Link has been monumental to the society, and we can’t underestimate that at all.

L. Larson (Chair): Thank you, Barbara, very much. I’ve had the pleasure of being involved with you and all the work you’ve done in the last few years. It’s just amazing.

I personally was not a person who thought of dementia and Alzheimer’s as a terminal illness. We’ve gone through so many different presentations now where that palliative approach is what is missing in so many areas. I guess it’s the fear that if I’m getting palliative care, I’m dying. Well, you are — maybe not right away.

I guess it’s introducing it to people so that they don’t think you’ve got them on that downhill slope really quickly. It’s just part of a process to make their life that is there better. I commend you for all you’ve done on that too.

The Finding Your Way that you mentioned — you are aware of the CanAssist program in Victoria? I thought that was amazing. I know it doesn’t work for everybody, but perhaps it will work to keep people in their homes a little bit longer, on their own, with having that type of a system set up. That’s interesting.

J. Darcy (Deputy Chair): Thank you for everything you do every day and your passion and your support for all of us in becoming more knowledgable in assisting our communities, and our own constituency offices, to become dementia-friendly.

I want to zero in on the training aspect, because you talked about the huge role that care aides play. We talk about other health care professionals, but let’s talk about who spends most of the time with patients with dementia in the last period of their life.

I know there was a proposal a few years ago that part of the core curriculum…. This is when the care aide registry was created. There should be standard core curriculum across the province that should include dementia education for care aides in particular.

I’m not current on where that’s at. Can you talk about what you think is needed and where we are now?

B. Lindsay: The exciting thing, Judy, is that it is now part of that. We’ve been able to provide some support for that program to be started. I think the thing now is that it’s just in place for a short time. Now there are many care aides, even taught before that program got involved, right? So that program came in.

What we’re finding is that the education that we do to care providers, care aides in particular, is to many who haven’t had that opportunity to get that dementia training when they first went through their training. Now that it is part of the curriculum, we expect there will be quite a difference.

It was great that we were involved. We had a chance to put our mark on that education, and we’ve been in touch with all of the people who provide that education around the province, as well as the people who run the registry.

I think that the Alzheimer Society is going to have a chance to have a voice and make sure that the approach that we suggest is the one that will go forward. But there are still lots of people who just didn’t get that in the first round, so we feel like there’s lots of learning to still do.

J. Darcy (Deputy Chair): To continue on that, it is now part of the core curriculum and has been for how long?

B. Lindsay: Well, Judy, I can’t quite remember if it’s three years or if it’s just two. I just can’t recall. Sorry.

J. Darcy (Deputy Chair): I was involved in it about four or five years ago. But then there are all of those care aides who are working today who don’t have that training.
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B. Lindsay: Who didn’t get it because they were trained before that time, yeah.

J. Darcy (Deputy Chair): I know that traditionally what happens is that people are sort of grandfathered as far as their training. But is there a program in place to take that training out to people, to the majority, then, of care aides who are now caring for patients with dementia?

B. Lindsay: The Ministry of Health has organized a program called PIECES. It’s an Ontario-based education program for people who are leaders in the health care facilities and long-term-care facilities. That program has a companion piece called U-First! that has been developed by and is owned by the Alzheimer Society of Ontario. We’ve compared our education program for care aides. It’s very similar. There are a lot of similar concepts that are provided.

We’ve been invited to a lot of care facilities to augment the training that supports the care aides. I think that what really seems to be important is to get that opportunity for each of them to talk with each other, to compare their experiences, to hear the stories that our educator can provide and to really focus on just dementia care in the care facility, because 70 percent of people who live in care facilities have dementia.

The thing is that there’s a lot of pressure to do the work quickly. There’s a pressure to do the work right. There’s a pressure to do the work safely. There are so many things that make it tough for care aides to do exactly the right thing at exactly the right time and in exactly the right way. Having refreshed education, I think, is really encouraging. That’s one of the things that the society would like to do. It’s an important piece, Judy, yes.

D. Barnett: Thank you very much for coming and the great work you do. In rural British Columbia it’s very difficult to have societies like yourself bring knowledge to the communities. How much outreach are you able to do out into these small, rural and remote communities who are facing Alzheimer’s and dementia the same as they are in urban centres and in some places even more?

B. Lindsay: Absolutely. The Alzheimer Society has over 20 resource centres around the province, and each of them has communities that they outreach to. For example, our Kamloops office reaches out to 100 Mile House, to Williams Lake, to Logan Lake, to Merritt. We have support groups in as many of those communities as we can. That’s important.

We provide education in each of those communities at least once a year. Our person from Kamloops, for example, will go and visit each of those small communities. We have volunteers in those communities who can be on the ground to support families who need immediate care.

We have a dementia help line that supports people throughout the province, and we have conferences. We call it the ME in Dementia conference. That goes around the province. We try and do at least four a year, and we do them in smaller communities. I’ve been involved in a number of them that are in 100 Mile House, for example, and Williams Lake.

I think that the other thing, too, was, of course, the aboriginal communities. Where we’re invited to come, we will go out to aboriginal communities. I think that those are some of the ways.

R. Morris: I was just going to say with the society’s new dementia-friendly communities initiative as well. That’s one other way where we’re able to get the information out to more rural or remote areas and really try and build up the community capacity for understanding dementia, recognizing and responding in an appropriate way, so that we’re building communities that are safe and inclusive for people with dementia.

Thank you very much, Barbara and Rebecca, for being here. As you know, most of us have seen you at the Legislature, and we are all very big supporters and fans of what you do and your First Link program, etc. So thank you very much. Keep up the good work, and keep letting us know how to support you.

L. Larson (Chair): It is still morning. Good morning. We start to lose track of time throughout the day. Thank you so much, Barbara, for being here. You’re representing the Canadian Cancer Society, B.C. and Yukon Division. We have about 15 minutes for you to do a bit of a presentation and then to give us a chance to ask you questions. I’ll turn it over to you. Would you introduce yourself for the sake of the record, please.

B. Kaminsky: Sure. My name is Barbara Kaminsky. I’m the CEO of the Canadian Cancer Society for B.C. and Yukon. I’ve been in that position now for almost 22 years.

Actually, before I worked in this capacity, I had a variety of other settings that I worked in. I used to be a vice-president at Surrey Memorial Hospital. Among the departments I had was extended care. So I know something about palliative and end of life. Years ago, before that, I was the long-term care administrator with the Richmond health department. So, again, there’s some knowledge that I bring from that part of my background.

Many of you know the Canadian Cancer Society. We’re the largest charitable funder of cancer research in the
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country. We provide a lot of support programs for cancer patients and their families, and we’re probably leaders when it comes to prevention, not only of cancer but of other diseases as well. We’ve been proud to be a champion of prevention.

Now we’re also proud to lend our voice to being a champion for palliative and end of life, because we know that it doesn’t get enough funding. It doesn’t get enough attention. We also know there’s a lot of confusion. I know that this is a very knowledgable panel, and you do know that there is a difference between palliative and end of life. That certainly is one part that people confuse. We know that it’s an important part of the overall health care system.

We also know that even though people do get referred for palliative care, very often it’s very, very late in the process. What might have been more supportive care throughout their illness is provided too late to have been really able to make a quality-of-life difference.

Barbara Lindsay before me talked about palliative care and cancer patients and how it needs to be understood that more than cancer patients can benefit from palliative care. We would agree, but I’m here to talk about cancer, so I’ll focus on that.

We know that about 80 percent of doctors refer terminally ill cancer patients to palliative care, but again, it’s in the latter part of their cancer journey, often in the last few months or even the last few weeks. We very much support the provincial end-of-life care action plan for British Columbians, and we appreciate that steps have already been made in terms of planning for palliative end-of-life care.

We’re here in our presentation to give you three recommendations that you could work on. First of all, keep up the great work that you’ve begun. Palliative and end-of-life care in B.C. is an area that needs more emphasis, and increasing hospice spaces is one step along that journey. We also believe that you need to continue to build capacity and invest in the training and retention of health professionals and to raise awareness that palliative care does not only refer to end of life. I’m sure that other speakers have made that message, and as I look around the table, probably most of the people on the panel can finish my sentences for me. You’re all very knowledgeable on this.

I said I was going to focus on cancer. We know that cancer is the leading cause of death in B.C. as well as Canada, and although we work very hard in reducing the number of cancer cases going forward into the future, we know that the future projections are really quite daunting. Based on current rates of cancer applied to the growth but particularly the aging of the population, in the next 15 years or so we anticipate that the number of new cancer cases will rise by 40 percent.

So they’re fairly stable rates, but again, because of that increasing number and aging of the population, you see that increased number. And a lot of those cancer patients are going to need palliative care, so we need to do something more proactive that will be able to address what some people say is a tsunami.

Cancer is a disease that affects us all. More and more people are becoming cancer survivors, but people still need palliative along their journey.

About a year ago we made a submission to the committee about supporting the need for improved development and delivery of early, active, competent, integrated, holistic and compassionate palliative care. This is a combination of expert pain management and skilled emotional, spiritual and psychosocial support, along with comfortable living arrangements and the appropriate level of care, whether it’s at home, in a hospital or in another setting.

I think Dr. Pippa Hawley has already presented to this group. She presented her bow-tie model?

B. Kaminsky: Okay. We think that’s a good example of making the point that palliative care is not synonymous with end-of-life care — and talks about the increasing intensity as the patient’s needs increase. So we think that if you’re able to improve palliative and end-of-life care in British Columbia, we’ll have thousands and thousands of people in the future that could benefit.

What are some of the gaps that we think you need to address? We know that there are late referrals to palliative care — so helping people understand that palliative is not end-of-life, and it doesn’t mean you’ve given up hope. We know that patients and the families and health care professionals still need to overcome that misunderstanding. We know that these late referrals mean that people have undue stress, undue pain, and wouldn’t we all want to reduce human suffering?

Also, there are studies to show that the absence of palliative care is actually costing us more money. The system will be more cost-effective if people get the right care in the right place at the right time — certainly, anything that we can do to reduce emergency department visits, ICU stays and hospital stays; fewer people actually dying in hospital and dying in other, more appropriate locations.

For any of you that have had a loved one or a friend die in hospital, it’s not the most appropriate place for that to happen. Too much technology, too much institutionalization and certainly not the caring that you would get in a more homelike setting.

We know that there’s insufficient funding and support for palliative care programs, and it has a huge impact on the caregivers. They shoulder a huge burden without enough support, particularly in the community, and I would say….

Earlier we heard about the importance of rural and remote communities, and that’s something I would really
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like to emphasize. Those of us that work and live in urban centres are quite fortunate because we have access to a pretty good array of health care and support programs. But it’s less available as you are in smaller and more rural communities. Clearly, in those instances you’d be looking at fewer in-house, hospice-type beds in institutions and more of the in-home support.

We really encourage further education around reducing the misconceptions around palliative care so it’s not just end of life. It’s not synonymous with giving up.

Basically, our recommendations. Keep up your great work, and as you consider the implementation of your strategic plan, really do make sure that you include home hospice options, particularly reflecting northern rural-remote areas, and that you look at measurable standards. As you’re going to have different models of service delivery in different communities, it would be good to have standards by which you could judge whether or not you’re being effective, cost-effective, etc. It won’t be a cookie-cutter model, one size fits all.

Second, we’d like you to encourage further building of capacity, investing in the training and retention of health professionals, and that this training extend beyond health care specialists, oncologists. Certainly, general practitioners need more information in this area.

Again, if I could just encourage you to help people understand that palliative care is not synonymous with end of life, and quality of life also includes quality of death.

I think I’m just going to end by saying that…. I know you’re going to hear a lot of presentations. I’m hoping you’ll hear testimonials of people that perhaps didn’t have the quality palliative and end-of-life services that they would have benefited from. But I’m also hoping that you get the good stories too, because there are so many good examples of where the system does work and where people have a very meaningful, positive difference as a result.

Once again, congratulations on taking your steps into this journey. It used to be kind of a taboo subject. It’s quite interesting over the years how things change. I’m glad that, in many ways, palliative and end of life has sort of come out of the closet, if you will, and I’m glad people are addressing this in a proactive way. So I congratulate you.

I’m in a small community in the south Okanagan. The lack of hospice…. I mean, there is hospice, but you have to leave your community to get to it. Also, there’s a shortage of people to actually do the home care end of things. The largest percentage of our people, unfortunately, end up in the acute care beds in our small hospitals, and that’s where they die.

The problem is there’s a fair amount of money involved to health authorities for those acute care beds. They have difficulty letting go of that funding. It came up a few times already today, where in order to save money, sometimes you have to spend money. You know what I mean?

L. Larson (Chair): But to pull the money away from that and put it out to hospice and to home care and so on…. It is a struggle. It’s a terrible struggle.

I don’t have any easy solution at the moment. I’m hoping that just overall pressure from government and from organizations like yours and so on will eventually push those dollars out into the communities and away from those being in acute care beds, where they really don’t need to be. That is not the way any of us want to end our lives, and more and more so it’s happening because there isn’t the hospice and whatnot.

I just throw that out there for you so that you’re on my side when I’m trying to squeeze the health authority to push the money into where it does a better job of taking care of people in those final days. I don’t know what your take is on that overall.

B. Kaminsky: I understand what you’re saying. I agree, and I do understand how difficult it is to reallocate resources.

Theoretically, when we became organized through a regional health care system — as opposed to having hospitals and then home care and continuing care, etc. — it was allowing people to have that more holistic perspective. Even so, with the best of intentions, the senior leadership in health authorities are challenged constantly. You’re fine when you get new dollars to add to new programs, but to take something away is always the challenge.

It’s not just true in health authorities. We have the same internal challenges in the Canadian Cancer Society.

Yes, it’s true that people need to apply pressure. Often I find the way to get the most effective change is for patients and families themselves to be more articulate, more organized.

We actually tease politicians at times, too, that we can sometimes do public opinion polls to show where the public attitudes are, and then we provide that data to the politicians so that they would know that people are ready for their leadership.

J. Darcy (Deputy Chair): Thank you, Barbara — a wonderful, thought-provoking presentation. You refer, in your paper, to the absence of a section. The absence of palliative care has a cost. There are some figures from 2001-2002, which are very compelling, that would basically say the earlier that you’re able to provide palliative care, both the better it is for patients and the more cost-effective it is.
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I wonder if there’s some updated analysis or figures on that. I note it says 45 percent of Canadian cancer deaths occur in acute care hospitals, so I guess we could sort of extrapolate. But are there more current figures available?

B. Kaminsky: Yes, that was our challenge. There are studies, but some of them tend to be quite small in number, in terms of the sample size, and they might be in a jurisdiction that people in B.C. would not say is terribly relevant to them.

I acknowledge that we’re not necessarily the source of all knowledge when it comes to cost-effective studies on palliative at end of life. I’m hoping that you have other people that’ll make presentations that have better data on that point.

But there is a consistent pattern, no matter what the jurisdiction is, that it is cost-effective. Most people just intuitively say: “Yes, we know this is the right thing to do. It’s the compassionate thing to do.” But the thing that really tips the balance of the argument is the money part. The trick is the reallocation that needs to be done in order to achieve that.

So just because you have data that give you all the information you need to make a logical case…. Then you need to have the small-p and large-p politics that make it work. That’s true of many topics.

D. Barnett: Thank you very much and for your presentation. I’ve had both palliative care with friends and family at home and in the acute care facilities. One of the things that I find…. I’m from rural British Columbia, and where I come from, we have great palliative care. We have great hospice.

The issue is most people don’t know about it. So their loved ones are sick, their loved ones are dying, they don’t know the options, and they don’t understand the palliative care.

Right now I’ve got four or five friends whose husbands, unfortunately, have got cancer, and they’re dying. Because I went through the experience, I’ve been able to help them and to help them make decisions and understand process, etc. But I find one of the biggest hurdles is information. Your acute care doesn’t give you that information.

So how do we get everybody to work together better and collaborate? Because we’re still in silos. Until we can get out of these silos, you can say: “We should take dollars from here and put them over here.” But this group doesn’t want it to happen. We have a bigger issue than what we’re talking about here, I think.

B. Kaminsky: Sure. On the point about educating people about the services that could be available but they just don’t know to ask or where to research it, a lot has to do with the generation of older people now that were accustomed to just kind of grinning and bearing it. I think of my mother’s generation.

The notion that…. You know, you don’t have to put up with pain. You have a right and, actually, a responsibility in terms of your own care to say: “Look, whatever it is you think you’re giving me to manage my pain, it’s just not working.” So we need to encourage patients and their families to speak up, because the caregiver doesn’t always know that whatever it is they thought they did as an intervention actually isn’t doing the trick.

In our small way, in the Canadian Cancer Society, when there are people that are going though palliative and end-of-life parts of their journey, often they or their family members will reach out to our toll-free cancer information service. As we understand what it is that they need, we can advise them about, first of all, what you can look at in terms of treatment possibilities or care possibilities.

Then we have a community services locator that we can tell people: “Okay, you live in Nelson. This is something you might be able to obtain in your community.” But does that speak to every single patient that might require this? No. First of all, we’re only specializing in cancer patients, and frankly, only a relatively small percentage of people even know about our service, even if they are a cancer patient.

In the ideal world GPs would have all of this knowledge at their fingertips. They would just go on their computer. They’d navigate, and they’d find it.

I find it unfortunate that in a lot of health care, we find that we need patient navigators. If the system actually worked, we wouldn’t need navigators. Why set up yet another silo? But it is what it is, and we are where we are, so we have to try to tinker and make it better.

D. Barnett: I think that in my community we are very fortunate, because we have some physicians who do provide information. But that doesn’t happen everywhere.

B. Kaminsky: Probably in smaller communities GPs are better at looking at the range of possibilities, the range of resources, in part because they’re the only game in town. They also have a stronger relationship, by and large, with their patients. I mean, in the urban centres there are still a lot of people who don’t have their own GP. They rely too much on clinics. You don’t build up a relationship with your physician through that process.

D. Barnett: We go shopping together and to the hockey game together, so it makes a big difference.

M. Stilwell: I just wanted to reiterate and thank Barbara for pointing out something around themes we hear. A lot of presentations are: “Let’s add some more people. If only we had a nurse practitioner. If only we had
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a pharmacist practitioner. If only we had….” You know, adding more bodies is not going to solve what you’re talking about. And I take your point about navigators. I think it bears repeating.

B. Kaminsky: We understand there are not unlimited resources, and we’re very careful about when we talk to government about adding. I would say I’m very glad that this government agreed to help support our Cancer Prevention Centre.

L. Larson (Chair): All right. I guess if no one else has a question, Barbara, we can let you off the hook.

L. Larson (Chair): Early. You got off easy, and I guess it’s because your message is very clear. We, also, are a little more informed sometimes about certain aspects of our system than other aspects.

Thank you very much for being here. We really do appreciate it. We may be talking to you again.

B. Kaminsky: Good. I would look forward to that. And congratulations and best of luck on your work.

L. Larson (Chair): Good afternoon, gentlemen. We’re going to start. Please, would you introduce yourselves, and then we’ll let you just go right into your PowerPoint presentation.

J. Sloan: Okay. John Sloan. I’m a family doctor from Vancouver. My practice is confined to home care of the frail elderly.

I have a very brief bit to tell you about introduction to the frail elderly. A picture is worth a thousand words. There they are. The frail elderly are people dependent on other people, irremediably, for activities of daily living. Our patients tend to be homebound. They tend to be at or near the end of their life, and they don’t benefit from business as usual in health care, which is rescue-oriented toward the hospital and prevention-oriented toward drugs.

They prefer and somehow instinctively understand that they benefit from being provided with care that assures their comfort and care that maintains their function. That’s what they like. That’s what they want. That’s what we give them.

There’s only one way to get that to them, and that is through a team approach. That team has to be available 24 hours a day, seven days a week. If not, they will have a crisis. They’ll push the 911 panic button. They’ll be in the hospital. They’re no good for the hospital. The hospital is no good for them. It’s the marriage made in hell.

There’s a lady there. There’s another one. That lady is 100. There’s a gentleman of the Downtown Eastside.

We think that care of these people requires a relationship. It is the relationship that keeps them out of the hospital. It isn’t a particular kind of technology. It isn’t a particular kind of team. It isn’t a particular kind of on-call schedule. It’s trust. We promise to take responsibility for them. They count on us to do that. We deliver on the promise. Then, when they have a crisis, they phone us instead of pushing the panic button and ending up in the hospital.

I’ll just run a few more pictures here. That lady is in the hospital, just about at the end of her life, and that fellow actually died the day after I took this picture.

It’s over to Dr. Slater for the real meat of this presentation. However, we did bring you some books. I wrote a book on the subject. There are four of those, and then there is a much, much better one by a very famous doctor from the U.S., Atul Gawande.

J. Slater: Sure. I’m Dr. Jay Slater. I’m also a family doctor here in Vancouver. My clinical practice is split between home care of the frail elders and palliative care. I do nursing home consultation palliative care. I also do an administrative role with Vancouver Coastal Health.

John has basically usurped the whole discussion with pictures being worth thousands of words. So we’ll get into the boring school stuff. Anyway, this is in your handout. It’s just a printout of the PowerPoint slides.

Frailty is not just age. Frailty is actually a clinical syndrome of a lack of physical resource to withstand stress, basically. It’s called multidimensional syndrome, where people don’t have the reserve to fight an infection or fight pain or fight a change of scenery — various things that go on. It’s not just being old. There are some 100-year-olds that aren’t frail, and there are some 65-year-olds in our practice that are very frail.

Dementia, as you know, is a loss of brain function. By definition, it’s in at least two spheres of cognition: language, visual perception — visual-spatial perception and speech.

Palliative care, as you’re probably aware, is an approach to care which is more attuned to symptom management and quality of life as opposed to a prolongation of life and treatment at all costs. Of course, in the old days it was one or the other. Now there’s much more of a melding between active and usual treatment and a palliative approach. There’s much more overlap. Thank goodness, because in the old days a doctor or someone would say:
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“Get your affairs in order. There’s nothing else we can do for you.” Now that’s not really the case. There’s a little bit more overlap.

Palliative care as a notion is to promote the highest quality of care, given life-threatening illnesses. We’ll talk a little bit about life-threatening illnesses.

There are three prototypes. There’s cancer. There are chronic diseases, which are typically relapsing and remitting, and then frailty and dementia, which can be lumped together. Frailty and dementia have the same kind of prognosis. They represent the same kinds of challenges to an individual. The very frail or the very demented have difficulty with hospitalization. They have difficulty post-operation and surgical complications. They have poor health outcomes for interventions. They have a higher risk, of course, of institutionalization, acute care and death.

We like to use these simple comic curves to sort of describe those three prototypical scenarios. Cancer is one where the body ticks along — if you can see that, up the Y graph. The vertical is health indicators, and time is along the bottom. So people can kind of go along for a time, and sometimes in that time course active interventions are pursued — chemotherapy, radiation, surgery.

The whole time, as I said, there’s a bit of an overlap with palliation, as those things can be painful and challenging in and of themselves. So a palliative approach could be in place further to the left of this curve, but at some point the body outstrips its resources, and death usually follows rather quickly.

In the model we’ll talk about later, in terms of providing system care for these folks, you can see that when the curve starts heading south, it heads south quickly. It’s a defined point in time when you can say: “Okay, we send in the troops. We can provide palliative care nurses and extra home support.” It’s usually a defined period of time, and that’s nice because it’s defined.

Frailty is not like that — nor is chronic disease, to be honest. Chronic diseases are things like congestive heart failure or emphysema, chronic lung disease, where people typically tick along and have exacerbations, and they need some kind of care, some kind of treatment. They get back some or all of their function. It’s usually not quite. As you can see, the sawtooth graph ticks downwards.

Towards the left of the graph, interventions or acute interventions. It’s really, as John was saying, kind of like rescue, with acute care, with emergency visits, and it can sometimes bring people back. Further to the right, as people get more and more frail and more and more sick, those interventions seem less and less appropriate. At some point people might say: “I just want to focus on comfort care.”

This is the frailty-dementia curve, which you’ve probably all seen as well. This is a much less predictable curve. We have many patients who are frail and could die tomorrow, or they could die a year from tomorrow, or they could die in ten years — well, maybe not ten years but several years from tomorrow. How do you create a system that can be readily responsive to that? In the cancer curve you know when they are in their last days, typically, and you can throw a lot of resources at them. But people that are sort of ticking along over time, it’s hard, and the system, as it is now, doesn’t really support palliative interventions for frailty and dementia.

Here are some of the challenges. There’s a bit of a disconnect between restorative care and palliative care, and people sort of end up on one track or the other. We’re trying to suggest that they can be on both tracks simultaneously. Certainly, advances in medical care, as you all know, between diagnostics and therapeutics and medications, are making people live a lot longer with a lot more burden of illness, a lot more frailty, because they’re living longer. Things that would have taken them years ago are no longer.

Another challenge is that the health care system is typically geared towards acute interventions. Someone has a crisis. They arrive in emerg. They get acute care. Or they arrive at their family doctor’s office and are treated as an acute crisis. This is often appropriate for younger people, certainly. It’s appropriate for some of those sawtooth exacerbations of chronic disease, but it’s not always the most appropriate thing for elders.

It’s difficult, for sure. It’s difficult to have conversations with patients and their families about switching track, saying: “Are you at that point in your life where hospitalization, rescue care, crisis intervention are no longer really appropriate and, perhaps, comfort care is more appropriate?” Those are hard conversations. It’s not easy to do.

What do we need to improve care? Obviously, some thoughtful and thorough assessment all along the way to figure out where people are and try to give them a reasonable stage, which includes prognostication. How much longer can we go on like this?

Care providers need to contextualize things. Yes, you’ve got pneumonia, but you also have dementia, frailty, chronic pain, mobility problems. We can treat pneumonia. But what is that in the bigger picture? Care providers need to be honest and have open discussions about prognosis and the risks and benefits of treatments. When is the right time to stop? Patients and families need to be empowered to say: “It’s time to stop.”

One example. We refer to this, but it’s certainly not the only example. It’s a model of care which has been well documented. In Halifax Drs. Mallery and Moorhouse have come up with a systematized way of assessing and then communicating staging of dementia and frailty to patients and then prognosticating around that.

We need to look at the literature, which is basically written for younger people. The guidelines around heart
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failure or around diabetes or on hypertension care — all written for younger populations. There’s not that much — even though the population is booming — primary research done for what these interventions actually do for frail elders.

We need to empower families and patients to ask appropriate questions at the right time. Of course, elders often don’t want to. They don’t feel empowered to do so.

Here are some of the questions. They’re in your handouts, and I won’t delve into them, but it’s really: at a time of crisis, am I going to benefit from this treatment? Is it going to prolong my life? Is it going to improve my quality of life? Is it going to require hospitalization?

Those are some key questions. We’ve got two pages of them that have been developed, and we really encourage our patients to ask that of their caregivers if they’re in emerg or if they’re in a hospital ward or if they’re at home.

Once patients and family — John alluded to this, of course — have opted for a more palliative approach, we need to be able to honour that request. If we’re promising them comfort and dignity at home, by gum we have to have the systems in place, and they’re not always there. It has to be 24-7 accessibility and nimble service coverage to meet the patient’s and the family’s needs.

Of course for frail elders, often their primary caregiver is a frail spouse or old spouse — older — and so they can’t do it. They’re already at their limit of coping. So, a system that puts things in place around them to help them stay at home.

Some of the high-level considerations are: how do we train our new care providers — doctors, nurses, all across the board — in frailty care, in care that promotes quality of life but not necessarily extending quantity at all costs?

It’s already happening. There’s a provincial advanced care planning process, and it’s being talked about more and more — that somewhere up, further to the left on all of those curves, we need to have those frank discussions.

It’s not easier, but it’s more predictable to tell a cancer patient: “At some point these things are going to fail.” And you can kind of, you know…. At the Cancer Agency they can kind of give reasonable prognostic timelines. It’s harder with chronic disease and frailty — very hard with frailty. But we have to have those conversations as far upstream…. If it comes to a time when you can’t X, what would your wish be?

We’d like to see the establishment of a frail elder registry that has people who may have a day or 100 days or 1,000 days left in their life to be registered so that when that crisis comes, the system can quickly and nimbly jump into place to help them out. The current palliative care system is really only for the last identified part of life, and it is harder to predict. But if people were registered on a frail elder registry, then those systems would already be ready and waiting for them.

My last slide is really about better integration of all these services, right? You all hear that health care is kind of siloed, and we do our best not to be. But primary care and palliative care and community care all work in somewhat different ways, and we have to really bring our ducks in order to treat the patient, to put the patient in the centre of all this. Patient-centred care is, obviously, an important goal — better outcomes for patients and family, we hope; certainly, better satisfaction of the health care experience.

Last, but certainly not least, would be a reduction in costs. If you can keep someone at home and not in hospital, there’s a huge, huge amount of savings there.

Obviously, just from this short conversation we’ve had with you, we need to clone the two of you, because there appears to be, from earlier presentations — we are well aware — an extreme shortage of doctors who have the palliative care component to what they do on a daily basis, rather than just occasionally.

I have a 94-year-old mother that lives with me. She turns 94 in June. She is, I would say, a frail elderly person. She’s mobile on her own, but she’s unsteady on her feet. She eats her main meals with us. We take her to all her appointments and all of those kinds of things. She has a set regimen of medications because she’s had a high blood pressure issue, so she has a set regimen of pills.

I took her into the regular family doctor not too long ago. They did her blood pressure and ran tests and so on and thought it’s deteriorating, or she should have more of a particular medication. Unthinkingly, I allowed that to happen, and it made her sick. I went back and I said: “Okay. Just a minute. It wasn’t broken. Why are we fixing it? She’s okay on what she is. Yes, she is going downhill, and yes, the chance that she may have a heart attack or whatever is there, but she’s 94. You would expect that kind of thing.”

I think it’s really hard for doctors in general to not try and make something better at a stage in a person’s life when it doesn’t need to be. I’m wondering what your take is on that.

J. Sloan: Absolutely. The interventions, especially the preventive ones, which is what treating blood pressure is, to prevent a stroke, don’t work in the frail elderly — lots of good reasons, lots of evidence to show that. Yet we march in lockstep through these ways of treating people that just make them worse.

Cloning us might have unintended consequences, and I wouldn’t recommend it. You know, we have seven doctors in our program in Vancouver. The Medical Services Plan fee item for house calls is excellent. I tell medical students all the time: “You can make more money seeing people at home. Cut out the overhead in the office.” It’s true.
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What is needed, actually, is the infrastructure that supports that kind of a practice. We’re very nicely attempting to turn Vancouver Coastal upside down and shake them so that we can achieve more funding for that infrastructure. I think it’s important to understand that. If we could only collaborate, wouldn’t it be nice?

L. Larson (Chair): Yes, it would be. That word, “collaboration,” has come up in almost every presentation we’ve had.

J. Darcy (Deputy Chair): I’m so glad you brought the books. I already own both of them, so I won’t fight the rest of the committee to possess them.

J. Slater: We’re going to have a quiz to see who gets them. Who’s paying attention?

J. Darcy (Deputy Chair): When I read Dr. Sloan’s book — I’m two-thirds of the way through — the words “comfort” and “function” are the ones that just kept resonating. That’s the theme all the way through — what frail elderly need.

I was also struck…. One of you touched on the issue of drugs and drug evaluation and that we don’t, in fact, test…. The test groups for doing most of our drug evaluations that we use for frail seniors are not, in fact, frail elderly. Therefore, we don’t know what the impact is.

I want to pick up on the question the Chair asked, but in a different way. She said to clone you. My question, I guess, is: how many doctors are there, family practitioners, who do the kind of practice that you do? And what do we need to do to perhaps not clone you but to expand that considerably? You’ve touched on the issue of overhead. What are the barriers to having more doctors do what you do?

J. Slater: That’s a great question. I’ll start. There are not that many that do this exclusively, that do house calls as an exclusive part, so we’re a little bit unique that way. But there are some that do house calls as part of a regular office practice. In fact, I wouldn’t say many, but a number of full-service general practitioners, family doctors, still do house calls on their frail elders.

I think for them to be supported by the community care system would be helpful, because it’s a cumbersome system. We work right in it. Someone that works sometimes in it would have even more challenges kind of figuring out how to engage.

What does it take? I think it takes training at an early age so that people understand frailty is different. I think it takes a critical look at the kind of…. Most medical training really is in hospitals, right? Many trainees come out having never set foot in a nursing home, having never done a house call, having had very little family practice experience. On the one hand we say it’s upstream; it’s primary care that’s going to solve a lot of problems. Yet medical training is the other way around, and 90 percent of medical training is probably hospital-based. That’s a big thing.

Really, it’s about training-up the whole system. It’s not just doctors but the whole system too — appreciate that these conversations and these changes of course are important, and respect patient and family wishes.

M. Stilwell: Two parts. Can you talk a little more about the infrastructure that is required to support the kind of practice you have?

J. Sloan: It’s pretty straightforward. There’s an administrative part, and then there are the non-doctor professionals. We have two nurse practitioners funded by the region. They’re excellent, better in many ways than the doctors. There are rehabilitation professionals, and of course, there are case management nurses.

Our system is to jump in and help the existing community health centre–based group when there’s a crisis. In that sawtoothed situation…. On the downstroke, we know…. As we were dithering with this equipment downstairs the last hour, I got a phone call from a lady who had fallen at home. She was picked up off the floor by the paramedics. She refused to go to the hospital, bless her heart. I’ll see her in half an hour.

We basically need to jump in and do something when there’s a crisis and bring that team in. The infrastructure is a bunch of professionals, some administration, a place to sit.

One can define it, sadly and in practical terms, as everybody in this room knows perfectly well: it’s funding.

M. Stilwell: Is your role when you come in to kind of help tune up people…? Is that your role — to come in on the exacerbations? And/or are you helping the team develop and complete a plan? How do people actually interact on this team?

J. Slater: It is a primary care practice, a longitudinal practice. It’s not like you call us when you’ve had your fall and then you go back to your GP. We take on people at some point, when they’re of a certain age or certain frailties. They’re our practice. We see them…. Maybe three-quarters of the time are surveillance kind of visits and tuning up. The other quarter is something bad has gone on, and they seem to be more crisis-oriented.

M. Stilwell: Because I’m a physician I’ve become a lightning rod for patients who fall into this kind of abyss, which you would know about. They’ve had some kind of catastrophe, survived and now they are frail and are in a system — either don’t have a physician or their physician doesn’t know how to manage them.
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I have some remarkably awful conversations. People have told me they’ve been told by physicians at unnamed hospitals, “You are not welcome in our ICU anymore,” which is not exactly a change-of-course conversation.

My real point, now that I know you and how to find you, is: how do people get to you who are in this…? The change of course has been dramatic, and there’s no net.

J. Sloan: They phone us up, and they get on, sadly, the waiting list, which is now about 4½ months for our program. There isn’t any other such thing in Vancouver. There’s a wonderful one in Victoria, run by Ted Rosenberg. He coined the phrase “controlled dissent,” which is what looking after these people looks like and feels like.

I get a lot of those calls as well. I had one today. An East Indian lady has come to Canada in the last three or four months and has deteriorated and collapsed, and she’s stuck in bed. She has no coverage.

Now, Jay and I may not see eye to eye completely on this, but my feeling is: expand these programs. You expand the programs by funding them within the region, and I guess there is provincial support for that. I’m not sure exactly how that works.

M. Stilwell: I think it’s important to hear that you make a living, though, too. That was something I was curious about.

J. Sloan: No problem. We’ve beaten the Medical Services Plan over the head over the years to the point where the house calls fee item is a good one.

D. Bing: I just wondered. Your opinion about the aspect…. You were saying that it would be…. Well, it’s quite clear we need to establish a frail elderly registry so that if services are needed right away and a crisis occurs, you can get that. Do you have some thoughts on how this should come about or how we should create this registry?

J. Slater: Yeah. It’s a great question, actually. For instance, right now I think the palliative care benefits form is now becoming a registry. But, again, that’s when people are identified on that sort of slippery slope, and they’re almost there. They have to have what’s called a palliative performance scale of 50 or less, and then they get on this registry. That’s a great idea, except that those people are already somewhere identifiably closer to the end.

There are points in time when a frail elder might come to someone’s attention. Their family doc could sign them up earlier on. They don’t have to necessarily be, at this moment, a PPS of 50 percent of less.

I work in the stats centre — it’s a geriatric program in the hospital — and that’s a golden opportunity to grab some people who are on the cusp and to have that conversation and sign them up. That would be ideal. There are points along the way where people come to our attention.

D. Bing: Do you think if we picked an age…? If you reach a certain age, should you be on the registry?

J. Sloan: As Jay said, we have 60-year-olds who are frail and 100-year-olds who are driving cars and running businesses.

D. Barnett: We should clone you. My question is…. After listening to you and many health professionals, everybody talks about working in silos. How do you think, as medical professions, you could get rid of those silos?

J. Sloan: That’s a tough question. I’ve been at this for 35 years, and we’ve been talking about silos for all of those 35 years and probably prior to that. I think organizations are just built that way. You can’t have a sort of matrix where everybody’s running around helping everybody else and doing all sorts of things that seem to be the right thing to do at the right time, because it has to be organized.

It has to be organized for job responsibility. It has to be organized for the money to flow in certain ways. Jay may have a solution to that, but I don’t.

J. Slater: Sometimes I give a presentation that talks about the patient-centred family home. My first slide is one of the earliest concept of the universe, which has the Earth at the centre and all the planets going around the Earth.

People came up with a lot of interesting ideas to explain what they were actually seeing rather than think — again, until Copernicus came around and said that maybe the sun is at the centre of the universe and the Earth spins around it.

I think when we really start putting the patient at the centre of this and the money following the patient, as opposed to money following programs…. Programs butt up against each other, and programs don’t always agree. The patient is the centre of the universe.

B. Routley: I guess I’ve got two questions. One comes out of the comment that nurse practitioners in some ways may be better. I’d be interested in learning more about what you meant by that exactly.

The other is…. In your experience, obviously, this sounds like almost the panacea on how to provide care, but I’d like to know: what kind of savings do you imagine? I know it would be hard to quantify, but obviously the rest of the health care system is not going to buy into this un-
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less they can hear and almost touch and feel the amount of benefit that it would provide to the system.

You would know what percentage of these people would otherwise end up in hospital and cost a whole lot more dollars than your visiting their home. Do you have a way to quantify that at all?

J. Slater: Nurse practitioners are very highly skilled. We have two that are very adept with elder care. They’re very practical. They’re the most consistent. All of our doctors do house calls half-time or less; nurse practitioners are Monday to Friday, nine to five. They are the most consistent in the program. If I’m away on a holiday, the nurse practitioners pick up my slack — and for all of us. They’re exquisite.

They come from a system that is more relationship-based. They were nurses before they were nurse practitioners. While they can practise a lot like doctors, they can think a lot like relationship-based nursing.

J. Sloan: Yeah. I think that addresses it. It happens that they’re younger and they’re closer to their training.

The cost thing is fascinating. I’m connected with a group of eight GPs in the United States, and these types of programs have sprung up independently in rural Maine, Manhattan, San Diego, Minneapolis, Dartmouth. We get together yearly, and we talk on the phone frequently.

The most entrepreneurial of that group of people is a retired ER physician in Minneapolis, Minnesota. In the United States you don’t save money; you make money with health care. His corporation approaches big health maintenance organizations the size of British Columbia in terms of population and says: “Optimize diabetes care, and you’ll save five percent. Keep the frail elderly out of the hospital, and you will save 30 percent.” He does it and shows it. They offered him $25 million for his company last year, and he turned it down. That’s the kind of financial side that this has in terms of potential.

We’re seeing it in our small way. I think if and as — I believe it’s the way of the future — things change over to giving frail elderly people what they want and need and quitting wasting our time and effort and money on giving them what they can’t possibly benefit from, we’ll see much happier elderly people. And boy, are we going to see cost savings.

J. Slater: So the other thing…. You’ll see on our name card the Centre for Clinical Epidemiology. We’re only peripherally related to that. In terms of gathering and research, we are stymied. You’re absolutely right. People that don’t show up in the hospital emerg are not counted.

John is going to see someone in an hour and keep them out of hospital. No one is going to know except John. Administrative data right now is pretty simple — visits to emerg, days in hospital, number of those things. That doesn’t say that they are clinically well, clinically poor or that they could’ve stayed out of hospital, that they had two trips that were averted.

I think part of the idea of a registry also follows, tracks people over time, and so we can start picking up on those things. The data is pretty scant right now.

L. Larson (Chair): We’re going to go off air, but I’m going to let the committee certainly ask you more questions. But yes, our time is up at one o’clock. We’re going to go off air, if that’s alright, but if you gentlemen would wait longer, we would love to ask you a few more questions. There are a couple more questions at the table.

I’m just going to officially thank you for your presentation, and we will talk to you again.

J. Sloan: Thank you all for listening to us. It’s very, very nice to be able to talk to a bunch of influential people. It’s great.

M. Stilwell: You answered part of my question about the title and the Centre for Clinical Epidemiology. My question is: do you have…? One of the things that the government wants to do is have more nurse practitioners more integrated in different ways. I don’t see the data on productivity — you know, the cost of hiring a nurse practitioner versus having a general practitioner. Do we have data compared to other places that have more established nurse practitioner programs about the actual cost of care?

There’ve been papers from other jurisdictions that talk about over-ordering, under-ordering, and of course in your population, that’s probably a hot topic for everyone who interacts with your patients. Do you have any more to say about gathering data on your team and how to really make it work the way you want it to?

It’s true that nurse practitioners being funded by the health authority have certain contractual duties or responsibilities compared to our doctors, who are fee-for-service. We bill off MSP, so if we want to see ten patients this week or 110 patients this week, it’s entirely up to us. We don’t have those same kinds of contractual boundaries that nurse practitioners do. Their work is tracked. I wouldn’t say there’s a weekly productivity report, or
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monthly or quarterly, but because they’re funded in a different way, the hospital or the health authority needs to have some sense of what they’re doing. But ultimately, it’s the same pot, right? It’s a Ministry of Health pot.

J. Sloan: And you know, I’m sure, that the payment model is a huge potboiler that’s been going on forever, and there is perversity in each of the systems. In general, where you capitate or you pay a salary, the perversity is that people tend to take it easy — not the good people, of course, but we’re talking about everybody here. In fee-for-service, the perversity is you tend to churn.

S. Hammell: My question was only based on your comments with your fellow doctors in the States. Is there any data from there that proves your case, other than the anecdotal stuff that you’re talking about — the $25 million?

J. Sloan: Yeah. The best piece of information I’m aware of along those lines came out of Toronto in December. A couple of fellows that I know that run a program like we have in Toronto, plus one other author, did a meta-analysis of all of the data on these home care or frailty programs and showed — as expected and as common sense would tell you — clinical benefit and cost-saving in general. Maybe it wasn’t quite 30 percent across the board. Maybe you have to be aggressive and entrepreneurial to produce that, but I think it’s pretty clear now that you do have both benefit and cost-saving.

You’ve got to look a long way in the health care system to find something that’ll actually do both of those things at once. It’s amazing. And it has to do with keeping old people out of the hospital, but it has nothing to do with restricting them from going to the hospital. They don’t want to go to the hospital. We think we can do as good a job for the things that they want and need by doing it at home.

J. Darcy (Deputy Chair): I just want to make sure we can follow up. You referred to the example in the U.S., the guy who had the company contracted with the PMO, or asked to — 5 percent savings for diabetes, 30 percent. Can you just give us the information about that so we can follow up — and the same for the Toronto one?

J. Slater: I would just say one final thing. We are trying to run a study here, which requires the active group in our program and those that receive usual care. That’s fraught with some difficulty, actually establishing a similar group. And maybe that’s PATH ethics and all that stuff, but we’re trying to do the same kind of study here.

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4) Council of Senior Citizens’ Organizations of BC	Art Kube
	Kathleen Jamieson
	Mohinder Grewal

Chair:	Linda Larson (Boundary-Similkameen BC Liberal)
Deputy Chair:	Judy Darcy (New Westminster NDP)
Members:	Donna Barnett (Cariboo-Chilcotin BC Liberal)
	Dr. Doug Bing (Maple Ridge–Pitt Meadows BC Liberal)
	Sue Hammell (Surrey–Green Timbers NDP)
	Richard T. Lee (Burnaby North BC Liberal)
	Dr. Darryl Plecas (Abbotsford South BC Liberal)
	Jennifer Rice (North Coast NDP)
	Bill Routley (Cowichan Valley NDP)
	Dr. Moira Stilwell (Vancouver-Langara BC Liberal)
Clerk:	Susan Sourial

2) Association of Registered Nurses of BC	Andrea Burton
	Joy Peacock
	Alexandra Arndt

3) Nidus Personal Planning Resource Centre and Registry	Joanne Taylor
	Christine Gordon
	Hassan El Masri

9) UBC Department of Family Practice, Community Geriatrics	Dr. Jay Slater
	Dr. John Sloan

REPORT OF PROCEEDINGS(Hansard)

SELECT STANDING COMMITTEE ON HEALTH

REPORT OF PROCEEDINGS
(Hansard)

SELECT STANDING COMMITTEE ON
HEALTH