Health — Issue No. 18 — Monday, September 14, 2015 (HTML)

320 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); Dr. Doug Bing, MLA; Sue Hammell, MLA; Richard T. Lee, MLA; Dr. Darryl Plecas, 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	275
M. McGregor
S. Turgeon
J. Bratty
I. Ivanova
M. Cohen
D. Barwich
D. Davidson
D. Shaw
N. Chappell
M. Hollander

L. Larson (Chair): Good morning, everyone. My name is Linda Larson. 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? How can we enhance the effectiveness of addiction recovery programs?

On behalf of the committee, I’d 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, and we have a number of presenters that have been invited to expand on their submissions.

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

J. Darcy (Deputy Chair): Judy Darcy, Deputy Chair of the committee, the MLA for New Westminster and opposition spokesperson on Health.

S. Hammell: Sue Hammell, MLA for Surrey–Green Timbers and spokesperson for the opposition on mental health and addictions.

B. Routley: Bill Routley, MLA for the Cowichan Valley and just a member of the committee.

Dr. McGregor, I will turn this over to you. I know that we have just a certain time frame to get through the materials, so I’ll turn it over to you and Dr. Turgeon.

M. McGregor: Well, thank you so much for having us. Please put up your hand if we’re running too long and not getting to the questions. Also, don’t hesitate to interrupt us as we present.

I’m Margaret McGregor. This is Sue Turgeon. We’re family physicians. We’ve been in practice over a quarter of a century in full-service family medicine. We’re both part of the divisions of family practice.

Can I assume we all know what the divisions of family practice are? Please don’t hesitate to say no if you’re not familiar with these divisions. So silence means: “We’re familiar.” Good.

We’re going to start with a few stories. The first is a Mr. John McPhee. These are stories encountered by us but also by the health system every day.

Mr. McPhee is an 83-year-old gentleman with moderate stage Alzheimer’s disease. He’s got chronic, stable kidney disease and heart failure that is also stable. He went to see his GP for an ongoing cough. The chest X-ray showed that he had early-stage lung cancer. Should Mr. McPhee have surgery?

The next story is one of my patients who’s a homebound lady, Mrs. Jones, who’s 95. I’ve known her for many years. For the last couple of years, I’ve been doing house calls on her because she just can’t get to the office. Her mobility is poor, and it’s difficult for her to get around. She has been slowly declining. Both she and her family said: “Next time she gets….” She’d been in and out of hospital a few times. She said: “The next time I get sick, I want to stay at home.”

I applied for palliative benefits so that these would be in place if it came to a point where we needed to actively start palliating her in the home, and these were accepted.

I referred to the home care nurses, who were quite uncomfortable about this type of referral. The questions were: “Well, does she have cancer? What exactly is wrong with her?” I said: “Well, she’s really frail. She’s got kidney failure. She’s got congestive heart failure. She hasn’t been able to go outside for at least a year. She doesn’t want to go to hospital when the next crisis comes. I want to make sure that if she falls or gets pneumonia, she won’t go to hospital and that we can give her timely and good palliative care.”

The response was: “But if she gets pneumonia, she needs to go to hospital. Pneumonia’s treatable.” So again, a story that comes a lot.

This slide — I don’t know if any of you have seen this before — is the two maple leafs. The first maple leaf is the cost of health care in 1998, and the bigger maple leaf is the cost of health care in 2007. I have no idea what it looks like today, but it probably looks much bigger than that one.

The little orange tip is the amount of increased cost that’s really due to Canadians living longer — the impact
[ Page 276 ]
on aging of extending life. That little yellow swath is simply population growth. These are people coming into B.C. Actually, this is Canada, so people moving to Canada and the impact of our growing population in general. The grey swath is inflation — so just the increase in prices.

The big green swath is the swath that represents all the things that we’re now doing to keep people alive longer — the medications, the tests, the procedures, the amazing things we can do to extend life and to, in many cases, improve quality of life. The problem is that these have bought huge gains for most people, but in a small group of people they can actually cause a lot of harm. One of the challenges is to stop doing that stuff on the right people — identifying those people and then learning how to stop.

We propose that there are three best practices that would greatly improve end-of-life care. The first of these is screening for, diagnosing, staging of frailty and dementia. I’m going to turn it over to my colleague now to talk about frailty and dementia.

S. Turgeon: Frailty is a concept that has been around in the medical literature probably coming up almost to 20 years now — 15 or 20 years. There’s a certain resonance just in talking to people. If you say somebody’s frail, Joe Average on the street would kind of have a picture of somebody who’s maybe getting a bit stooped, slowing down, more fragile, might catch every cold that goes around, needs more help with things. People think of frail and think of those kinds of images.

What they might not understand is that in the medical world and in the world of geriatrics, frailty has been measured and has become understood as something that, once it starts and once that process actually gets going, has a certain inexorable progression that ends in a person’s death. When we reflect on the older family members that we’ve seen, if they’ve lived to a ripe old age and just start to decline, people say: “Well, they’re getting older, and it’s a little of this and a little of that.” It’s that process that we can define as frailty.

The research has shown that what is actually happening is that the body is changing. There’s a significant loss of muscle mass, probably because they’re not moving as much, probably because their balance is less. They’re afraid of falling. Maybe they’ve had a fall. That cycles back into further muscle mass loss. When lean muscle tissue is lost, it starts to change things, even at a cellular level, in the body. There’s evidence that shows that the immune system doesn’t function as well, particularly as one gets to the more advanced stages of frailty.

People age in a very heterogeneous fashion. I mean, there’s the 80-year-old who’s still going to the office maybe once a week, is keeping an eye on his investments and has maybe slowed down to one round of golf every couple of weeks instead of twice a week. And then there’s the 70-year-old who’s already in a care facility, in a wheelchair, who maybe had a stroke.

Often you can’t really tell just by looking at the outside package who’s frail. This is a problem when people show up in emergency. The emergency physician can’t say: “Oh, that’s a frail one, and that’s not a frail one.”

The story for the guy on the left is that he was a boxer. He had a bunch of head injuries, maybe smoked and drank a little bit too much and actually has declining mental functions. He’s got dementia, and dementia and frailty go hand in hand. He’s actually needing a fair bit of help just keeping sorted and organized during the day. Until recently, he was still going to the gym. He likes to think of himself as buff, but he’s frail.

The lady on the right just had a hip replaced, so that explains the walker. But she has just been out to tend to her roses. She’s ordering her groceries in because her mobility is a little bit challenged since her hip operation, but she’s still, effectively, living independently. She’s not frail yet.

Because you can’t just tell by looking at the outside, that’s one of the problems why frailty, amongst many of our colleagues — in acute care and even in primary care — in the community is kind of invisible. That’s the problem.

There’s a brilliant Canadian geriatrician, Dr. Ken Rockwood out of Halifax, who was one of the earlier researchers in frailty. If you’re going to research something, you have to be able to define it so that you’re talking about the same thing and then follow it along. He made this scale, which is called the Rockwood scale, for frailty.

Frailty starts at level 5. Someone could be mildly frail. They start to need help with the outside things. They can’t cut the lawn anymore. They can’t go out and get their groceries. They’re maybe needing help getting to and from, so the family kind of comes in. That’s the first sign. When you start to help Mom with the outside things, she’s probably getting mildly frail.

At level 6, she starts to need a little help with some of the inside things. Bathing is usually the first one, so home support is going in to help with the bath once or twice a week. That determines level 6 frailty.

From there, they start to need more help — maybe with dressing, a little bit, certainly with meal preparation. By the time someone gets to be frail level 7, they’re needing help. Probably they have mobility challenges. They certainly would be using a walker, if not a wheelchair, needing help with dressing and bathing and hygiene. Toileting is often an issue. And at some stage, they actually need help feeding themselves.

Level 8 is the terminal stage of frailty. When somebody is needing help with all of their personal care, including feeding, that usually means they’re in the last year of their life. Functional decline signals frailty progression.

Dementia and frailty are very, very closely aligned. Dementia also progresses through stages. Dementia is hugely common. I tell my patients who are in their 80s, “You know, 30 percent of people in their 80s will have
[ Page 277 ]
dementia,” and they’re shocked. If you get to be 90, it’s one in two.

Now, it’s often under-recognized. I don’t know how many conversations I had with a patient in my earlier years, and I thought the history that I was getting was spot-on. Then something isn’t sounding quite right, and I go back and do a mental status assessment, and they actually have dementia with preserved social graces and language function. They could present to emergency. They could give sort of a history, which may or may not actually be accurate. They could give the name of their daughter. They could say, “Oh yes, I was doing this, and I can manage this and that at home,” because part of dementia is often not having insight into your condition.

Again, it can go under the radar. The problem with that is that both dementia and frailty are strong predictors of poor outcomes when health care interventions are done. And like frailty, dementia, once it’s identified, is both progressive and ultimately terminal. That’s something that I think many of my colleagues don’t have a really crystal-clear concept of.

I was in that situation myself. Even though I’d been a GP for many, many years and had looked after older people for a long time, I didn’t have that really crystal-clear paradigm that yes, once this…. I kind of knew, but I didn’t have a way of communicating that with patients until Dr. McGregor and I attended a course, which we’ll speak about a little later, from Nova Scotia that has been really helpful in bringing clarity to this.

Recognizing and staging dementia. Both of them progress at about a year and a half to two years per stage. The stages of mild, moderate, severe and very severe dementia correlate with frailty 5, 6, 7 and 8. To understand which stage somebody is likely in, what you need to do is get information from their families and those people that know them. How much help is Mom needing? Does she recognize you regularly?

When someone no longer recognizes their prime family members, even though they still might be doing a number of other things independently, that tells me that the dementia has actually reached a severe stage. So I can tell that family that probably over the next year and a half to two years, there’s going to be trouble with falls. We’ll work really hard to mitigate injury from falls, but we can’t prevent falls, because falling is part of the brain not being strong enough to keep someone upright in a safe manner. It’s a part of the body’s deterioration.

At some point in the next year and a half, there’ll probably be weight loss, because they’ll stop recognizing food and being able to feed themselves a plate of food. We have ways to kind of support that. We can’t turn that back.

I think this is the important part. Once you’ve identified where someone is along that frailty and dementia continuum, the next really crucial step is breaking the news to them that this is where you are, and this is most likely where things are going over the next one to two years. Some people it’s faster. Some people it’s a little slower. But this is what lies ahead.

We understand that if a hernia surgery, if a colonoscopy, if a pacemaker implantation were to be recommended by someone for very legitimate reasons…. If there is underlying dementia and frailty, those are the people that end up with the post-op delirium that has up to a 25 percent chance of not clearing. Delirium is not fun. It’s suffering for the patient. It’s hard for families to see their family members confused and upset and aggressive.

There is an increased risk of falls and fractures happening. Pneumonia and other infections are actually a signal, often towards the end of life, that the end of life is coming. The body can’t protect the airway when they’re swallowing. The immune system is not as strong. Pneumonia happens.

Often people will end up…. This is as frailty and dementia progress. If they have an acute procedure, they come into hospital, and the procedure is a success. But just the week in the hospital bed and the stuff and the probable delirium…. Then they’re weaker, and they never regain their ability to live independently in their home with support. So it’s waiting for a nursing home bed. Sometimes they die from procedures that a non-frail person or a non-demented person would have a very low risk of dying from.

M. McGregor: Even when significant frailty or dementia is evident, it’s not uncommon for frail people to come and go to acute care in the last six months of their life and have many procedures that do more harm than good. This often occurs without any clear communication to the resident or the family that the end of their natural life is near and without any review of goals of care, given that reality. So it’s really an uninformed consent.

This gets us onto the second best practice to improve end-of-life care, which we propose would be communicating, educating and supporting families in decision-making.

There has been, actually, some research on doctors’ ability to do this. In fact, we’re better at recognizing a prognosis for cancer than frailty by far.

This study by Mitchell looked at residents in long-term care facilities, and it looked at them after they had died and examined whether doctors had identified that those patients were in the last six months of life. In the case of those with cancer, 98 percent of the time, doctors identified: “These people are clearly close to death. It’s time to really concentrate on their palliation, their pain, their shortness of breath.”

In the case of patients with dementia, even though 76 percent of them had died by the end of six months, only 4 percent of those people had been identified as being close to death. Those patients were far more likely to have feeding tubes put in, to have do-not-resuscitate orders, and more importantly, very few of them had their symptoms
[ Page 278 ]
managed. So they were much more likely to have shortness of breath, to have pain, to have all the things that occur towards the end of life that, if they’re not really concentrated on and treated, can be very distressing, again, both for the resident — the patient — and the family.

The other thing is that even if we understand that someone has a poor prognosis, we’re way better at communicating this if they have cancer than if they have frailty or dementia. This study by Zapka looked at people in the community and asked them about their prognosis. The doctors had all identified these people as having a very short life expectancy. Half of them had end-stage heart failure; half had cancer. Again, those with the cancer diagnosis knew about their prognosis. Those with end-stage heart failure were completely unaware, even though the doctors had identified that these individuals were likely to have a very short lifespan.

The final study there, by Apatira, actually interviewed people in the ICU and asked them about the ethics of withholding prognosis — you know, with this idea that it would be a downer, would be something people didn’t want to know. Ninety-eight percent of families said: “This is completely unethical. We need to know this. It’s so important to plan for communication, to be able to say the important things that we need to say to our loved ones before they pass.” In many respects, they likened it to the pre-palliative era, when we weren’t allowed to discuss cancer diagnoses, maybe 20 years ago.

Communicating frailty is a big issue. We’re trained to fix and manage these things. We have great, evidence-based protocols, and in fact the evidence is generated from healthy, non-frail people. When we apply these protocols — people come into hospital — we apply them to frail people. There’s absolutely no basis to do this.

In all the randomized controlled trials that generate these protocols, frail people are excluded. People with advanced dementia are excluded. We’re really sort of using evidence from one population and blindly applying it to others without really being aware of the potential harm that can cause.

Deciding when and whether to stop is far more challenging than continuing to do what we’re used to doing. It’s just way easier to fix stuff. Someone comes in. This is the protocol, and you just do it.

These are a bunch of questions that our colleagues from Halifax give to all of their frail patients. It’s on a laminated sheet, and they’re key questions they encourage families to ask when their loved one ends up in the hospital.

The first question is: which of these health conditions are easily treatable? Which aren’t? How much frailty is there, and how will frailty make treatment risky? How can symptoms be safely and effectively managed? Will the proposed treatment improve or worsen function and memory? Will the proposed treatment allow more good-quality years, especially at home? What can we do to promote comfort and dignity in the time we have left?

They give this little laminated card to all the frail people that they’ve assessed. It’s sort of a way of returning the advocacy back to the family in an era, still, where frailty remains invisible in hospital settings, in many respects.

The third best practice to improve end-of-life care. Once we’ve screened for frailty and dementia — we’ve identified it; we’ve communicated with families; we’ve armed them, presumably, with their laminated set of questions — we need to be there for the crisis. People can kind of truck along quite nicely, be quite stable even though they’re very frail, for quite a while — no big crises; they’re managing at home; there’s a bunch of supports in place — but then something happens. The whole idea of frailty is that they’re fragile, and when that something happens, often it can be the final terminal event.

Somehow we need to be able to develop a system of primary care that is relationship-based, where the medical home — the primary-care home, maybe not so medical — knows the frail person and their families. We’ve completed this anticipatory preparation with the family, with friends and with the formal caregivers, the home support people. We need to be working together — that this is the situation.

This person has said: “I do not want to go back to hospital when my pneumonia comes.” Then we need someone, when the pneumonia comes, to be there, to arrive at the house to confirm that this is indeed a pneumonia. It might be something very reversible and easy to fix. But we need someone to actually arrive at two in the morning when the crisis happens, and then we need to be very nimble at turning the services into very advanced, wraparound palliative care services.

How do we do this? Well, we don’t really know, but again, our colleagues from Nova Scotia have thought quite deeply about this. They’ve got a registry with the ambulance service of those with frailty who chose to avoid the hospital. They’ve managed to think about putting kits available in the home, where there’s some morphine and where you can rapidly provide this care, and they have a 24-7 team of people to respond.

I just wanted to do two more slides which I think are pretty important. They’ve assessed people coming through their clinic. Of the 150 frail people who did come through — 77 percent of scheduled cardiac procedures, 100 percent of other elective surgeries and 50 percent of hemodialysis — 66 of those procedures were declined. Those with the greatest frailty were three times more likely to decline.

Perhaps most importantly, Deloitte has just done a cost assessment of the people who have had this type of a PATH evaluation. They have estimated $15,000 per patient in cost avoidance, with a total of $4.5 million, looking at all the patients. So there’s a huge amount of cost saving to not do stuff to people who are likely to be harmed by it.
[ Page 279 ]

In summary, what best practices can be implemented to improve end-of-life care? Three best practices. First, we need to screen for, diagnose and stage frailty and dementia. We need to be able to communicate, educate and support families to make decisions. And we need to be there for the health crisis.

Going back to Mr. McPhee, I’ll leave that with a question and try to respond to your questions.

I’d just like to mention that Richard Lee, who is also a member of our committee, has now joined us. We have about ten to 15 minutes for questions. I’m going to start off with the Deputy Chair, to my left.

J. Darcy (Deputy Chair): What are the barriers to us being able…? So this is the PATH Clinic in Halifax. In some isolated places, we’re doing this in British Columbia? Is that fair to say? Can you talk about where we’re doing it well and what barriers are in the way of us moving from some good practices in isolated places to a system change? I know that’s a big question.

M. McGregor: Well, I don’t think we’re doing it well at a system level anywhere in this province. Perhaps we can talk a little bit about an initiative we’ve recently attempted in residential care.

S. Turgeon: We did a pilot project working with home hospice, at the Vancouver division in community geriatrics, to bring the PATH paradigm of identifying and staging frailty and dementia to groups of physicians and staff from 15 identified residential care facilities in the city.

We thought that by bringing them as a team, giving them this material, asking them to go back to their facilities and identify who they really thought might be in the last six to 12 months of life, and then look at their current goals of care…. Then we practise with them how to have more effective goals-of-care conversations, given the context of where the dementia or the frailty was at and what was likely to come ahead.

Through support from the community geriatrics, we actually tracked the percentage of residents in each of these facilities that had a do-not-hospitalize designation as a degree of intervention, which is what it’s called.

In the facilities that had these interventions, some of them — actually, most of them — increased their percentage of residents whose families had chosen “do not hospitalize; let’s focus on palliative care in the facility” over the six or eight months that we tracked. We brought the same group of people back a second time and kind of went over the successes and helped identify barriers.

That was just a small pilot project. We’re sharing this paradigm that was developed by the PATH Clinic in Nova Scotia in little ways like this, but there has been nothing systematic that has been done. I think that’s actually quite lacking in our health authority at the moment.

J. Darcy (Deputy Chair): I’m going to ask you for a follow-up — maybe in writing or in further conversations, because I’d be interested to know — as it relates to home support and as it relates to the acute care setting.

D. Bing: I was interested in…. Dr. Turgeon, you mentioned about the timeline, and you said that there are roughly 1½ years per stage. Is that fairly predictive?

S. Turgeon: It’s what’s quoted in the literature — 1½ to two years. So from the diagnosis of dementia to death is generally about ten to 12 years. In my experience, if the dementia onset is in the 70s, it’s often a more rapid course. If the onset is in the 80s or 90s, it kind of putzes along. Generally, if you talk to the families and look back, you can…. “Yeah, a couple of years ago, mom was kind of dressing herself, and we were helping with the outside stuff. But now, a year and a half or two years down the road, she’s needing more and more support.”

Because it happens so slowly, people don’t quite notice it. They think: “Okay. Well, we’re helping, and we’re supporting. It’s just going to carry on like this.” So therein is the need to sit down and say: “Actually, this is kind of where it’s heading. What do you think the focus of care that she would choose for herself would be?” I think so often we save people so that they can experience severe-stage dementia, which I don’t think many of us would really choose. It’s not pretty.

S. Hammell: We had a presentation by people from the residential care home facilities in Victoria. They suggested that the average stay in a residential setting is now about nine months.

S. Turgeon: The number that I’m given from Vancouver Coastal is about a year and a half, or 18 months. Certainly some residents will be in a facility for years. I’ve got some patients who’ve been there four years or five years, so they’re the other end of that curve. Some people come in, and they pass away within a few months. I think that reflects the fact that home and community care is being more successful in keeping people in community in their own homes until they’re closer to the end of their natural life.

S. Hammell: Another thing it might reflect is that the pressure to get into homes now only takes those people who are closer to the end of life, where previously it did
[ Page 280 ]
not. We got the sense from this presentation that this was a problem.

S. Turgeon: That they weren’t taking people early enough? I suppose. I mean, one could argue that most people would choose to continue living independently in their own home if there were sufficient supports. Even with the best residential care facilities, it remains institutional care.

M. McGregor: Just one other thing. It’s the opportunity costs of… All this potentially harmful stuff we’re doing to patients could much better be redirected to things like home supports, where there’s lots of good evidence for relationships really predicting good quality of life at the end of life.

You know, when we’ve listened to patients talk about home support, they want someone to sit down and have a cup of tea with them, and sometimes the family isn’t there for that. That kind of social visiting piece…. You can see how some of the money could easily be redirected into efforts to support their quality of life in very different ways from the medical system.

D. Plecas: Thank you very much for a great presentation. I’m thinking your patients are very lucky to have you as doctors.

To what extent, in your experience, are families a barrier? I know part of the whole effort here is to educate and communicate with families so that they become more understanding of what’s really going on. But it’s just that from what I’ve seen and heard, there seems to be…. It’s quite often the case that the families are the ones who are saying that they want to go in a different direction than what’s been recommended.

S. Turgeon: I work in a care facility, and I often sit in on care conferences and meet families for the first time on behalf of my colleagues who can’t be there — if they’re the primary physician for the resident — and have the opportunity to go through the discussion of staging of frailty and dementia. If it’s the first time they’ve heard this, they’re often quite shocked because nobody’s told them.

I think: “How can we expect people to make what we think would be sensible decisions if we don’t give them the information?” If they don’t know the lay of the land — they don’t know what’s coming down the road — why wouldn’t they want the pneumonia treated for their mom? They can continue coming for Sundays and going out for lunches and bringing her for walks on the sea wall with the wheelchair.

I think once we give them where things are at and how much natural life is remaining, that’s when you start to see families shift. When we did the palliative care and residential presentation, some people got the wrong idea that it was our agenda that once you’re in a nursing home, you never go to acute care, and that’s absolutely not the case.

There are some people with early-stage or earlier-stage, and they’re still enjoying quite a nice quality of life. If it is a simple pneumonia or a bladder problem — absolutely.

But I’ve also had the experience that once families go to acute care, and they come through that experience, they come back and they say: “Actually, it was pretty horrible. You know, my mom got C. diff. She’s now got bedsores she didn’t have before. She was quite delirious, and they had to sedate her heavily. I don’t want her to ever go through that again. Yeah, the pneumonia’s over, but now she doesn’t recognize us because the delirium has progressed.” So they experience it, and they see it, and it’s a conversation that goes on.

B. Routley: I wonder if you could comment on the impact of various drugs that are given for all the different diseases that may present themselves as we age. I have heard other doctors talk about the impact of more and more medication, and somehow that can lead to the dementia.

I wondered if you have seen any studies or have any information on the alarming numbers that you gave of the amount of dementias. Is this just in Canada? Is this internationally, when you give those kind of numbers — like one in two after you’re ninety and roughly 30 percent after 80? Is that everywhere, and do you think that medication contributes to that?

S. Turgeon: I think polypharmacy in the frail elderly is a huge issue, and there’s lots of data that stopping the drugs that are often guideline-driven…. You know, you have heart failure. Here are the six pills you need to take. You have diabetes. Here are the four pills you need to take. You had some angina. Here are another six pills.

If you diagnose frailty, it’s an excellent opportunity to say to the family: “All of these pills in a frail person start to fight, and they’re not likely getting the benefit from these pills that they did when they were 60. These pills have sort of done what they were supposed to do. Now is the time to start easing back on them.”

The interesting thing is we all have experiences when we start stopping pills. People actually perk up a little bit and get a little bit more functional. As far as I understand, the ratio of dementia is fairly standard internationally, but without a doubt, we have to find a way to do better with not overprescribing for our frail elders. We’re working on that as well.

L. Larson (Chair): Thank you very much. Thank you for your presentation and for answering our questions for us. We really appreciate that you took the time to be here today. We will take what you have said to heart.
[ Page 281 ]

M. McGregor: Just one last thing. If you have any interest in getting a presentation from the Halifax folks, I would be happy to set that up.

J. Darcy (Deputy Chair): We noticed that in your presentation…. You have the initial one. You also spoke to many other issues. We really appreciated today on end-of-life care. But you also had a lot to say on interdisciplinary teams and primary care and so on. We will be moving on to that topic, but we would certainly, I think, appreciate the opportunity to hear from you again at a future point on that.

Just to put into the record, too, today’s proceedings are being recorded by Hansard Services, and a transcript of the entire meeting will be made available on our website as well.

L. Larson (Chair): Thank you. Would you introduce yourself and who you represent, please.

J. Bratty: Yes, good morning. Thank you for the opportunity to speak today. I don’t have a PowerPoint presentation. I’ve just decided to speak directly.

My name is Joan Bratty. I’ve been a family doctor in Salmon Arm for the past 18 years, providing primary care for my own patients based out of our community hospital but also into the community. Prior to that, I spent four years working as a doctor in various locations across rural Canada — rural British Columbia, outport Newfoundland and the far north in Ontario.

Today I am honoured to be here representing the Shuswap North Okanagan Division of Family Practice, which I will shorten to SNO so I don’t have to say that every time. I’m here to describe the work that the SNO division has been undertaking since 2011 in order to improve provision of end-of-life care to individuals living specifically in rural British Columbia.

In 2011, the physician membership of the SNO Division of Family Practice identified palliative care as being a priority concern. This decision mirrored my own experience as a doctor, which was increasingly one of concern and discomfort about the state of palliative care services available to individuals in our region.

At that time, I volunteered to co-chair a working group which was a collaboration through the collaborative services committee and the Shuswap North Okanagan Division of Family Practice. We undertook a year-long process of gathering community input and reporting back on what were perceived to be the concerns at that time.

That process involved a community survey. We had about 200 responses from the community to that survey. We had a community forum that had about 300 participants, and at that forum, we had a sort of brainstorming and public input sessions.

The feedback from the community was collated, and a report was submitted. You have a copy of that report. That was May 2013. Essentially, that made some recommendations which we then proceeded to try to implement. We’ve made quite a bit of progress. We have seen some improvements since that time, but we still have some distance to go.

Today I’d like to describe some of those improvements that we’ve made in the past four years. Part of the reason for that is in the hope that we can help benefit other smaller communities that may not be quite so far along in the process as we are in Salmon Arm. I would also like to outline some of the challenges that we still face, specifically in the context of rural British Columbia.

Almost three-quarters of British Columbians, at this point, who die each year do so without accessing palliative care services. Many of these individuals live outside our large urban centres. In British Columbia, in particular, there are factors — such as geographic isolation, poor winter road conditions, scattered populations and challenges in human resources — which define rural palliative care as being quite a unique challenge compared to urban care.

These distinct realities for rural British Columbia do present what I would consider to be a unique challenge. They call for a creative approach so that rural British Columbians can face death with the confidence that they will not suffer unduly and that they will be able to die in the company of loved ones.

The experience of death and dying, as we all know, is one of the most profound and powerful of human experiences. There is great opportunity for healing along with enormous risk for suffering for both the dying individuals and for their loved ones left behind. We hope that further discussion will lead to better understanding and improvements in the care of the dying in rural B.C. We believe that in order to accomplish this, we must recognize that the rural setting is distinct from the urban one for palliative care.

I’d like to give this topic a little bit more of a human face. I’ve chosen just a few short stories based on my own experience or close colleagues to share with you.

My first story is that of an elderly man who taught high school English for many years in a small Interior town. One of his daughters left for the city and became a physician, and it was she who described to me his final days spent in a four-bed acute care hospital room follow-
[ Page 282 ]
ing a devastating stroke. His wife and children gathered around the bed. There are hospital curtains, as you’re familiar with, in these four-bed acute care rooms, and they attempted to help him through his final hours in that four-bed acute care hospital room.

Sadly, this is a story recognizable to any doctor or nurse working in a community hospital. It is what I would consider to be a fairly mundane reality of death for so many of our patients, often lacking in privacy, dignity and comfort. These three simple things should not be too much to ask for from our sophisticated health care system. The degree to which all people, regardless of their social setting or location, can achieve the goals of privacy, dignity and comfort at the time of their death could be one of the measures of the success of our society.

Many people would prefer to die in the privacy of their own home but worry about the extra burden that this can place on family members. These concerns are justified. Mostly, people are not expert in administering medications for symptom relief to the dying, but in rural settings without 24-hour community nursing care, families must be willing to do exactly that if they wish to accomplish a home death for their loved one. This challenge is in addition to the personal care and emotional demands placed on family caregivers.

This problem is exemplified in my next story, which is that of a retired RCMP officer facing a terminal illness with complex symptom management needs. It was his wish to die at home, despite his remote setting and a long drive to the emergency department. In the end, in order to manage his dying symptoms, his family doctor drove through a blizzard on the Trans-Canada Highway in the middle of the night to provide terminal hours emergency medical attention. This man accomplished his goal of dying peacefully at home but at an enormous cost and risk to other people.

Most people in rural B.C. have no access to immediate care after hours in their home, so nights and weekends, in particular, can be very frightening. There is an after-hours emergency palliative nursing phone line that you can call, and that does go partway to addressing this in terms of phone support. Of course, that does not replace the attention of a skilled and familiar family physician or a community palliative nurse who is knowledgable about that patient’s particular circumstances.

It is clear that our current model of rural palliative care does rely fairly heavily on the goodwill and capacity of care providers. In this previous example, one of the family members was an experienced nurse. But most individuals are not so lucky, and the choice to die at home can be fraught with risk and the potential for suffering on the part of both the patient and family members.

It is actually very difficult to quantify the degree of the suffering. There are studies looking at that. But from personal experience, we do know that caregiver burnout is enormous, and there is a high social cost to that. There’s fallout in terms of psychologic illness in family members who witness a difficult or traumatic death. That’s well known to us who work in this field. It tends to remain a very private matter that is difficult to take into consideration when you’re discussing a system design.

As I mentioned earlier, the initial work done by the SNO Division of Family Practice was very grassroots, involving community survey and public input with timelines for targeted improvements. We identified three areas of concern and set goals to address these issues.

We identified clearly that capacity-building was necessary and essential. The goals of education, team-building and efficient use of existing infrastructure were identified as paramount. We realized that in order to accomplish our goal of allowing people to die well at the location of their choice, we needed to strengthen and enhance a generalist, team-based and coordinated system of care which could use resources most effectively.

At Shuswap Lake General Hospital, which is the hospital in Salmon Arm, as at most small community hospitals, all the palliative care patients are under the primary care of the family doctor, not a specialist.

Our successes in the Shuswap include the hiring of a community palliative care coordinator. The successful candidate for this position is a long-term acute care nurse, but she had also worked in the community setting. This nurse now leads a weekly interdisciplinary team meeting, which I attend, which reviews all the current palliative cases in both the acute and the community settings. Our local hospice society workers are integrated with this team, and the society supports the medical and nursing staff with volunteers who help with the provision of emotional support to patients and their families.

Education of the community about advanced-care planning is underway. The local family physicians all participated in a provincial module to improve medical end-of-life care. Our hospital pharmacists are also part of the team, and they work proactively both for the admitted patients as well as patients in the community. We have some help from the hospital social worker when she can spare the time.

The long-term, trusting relationship between the family doctor and the dying patient is recognized as being very vital to the well-being of the patient and their family. As you can see, efforts are being made to support family doctors to continue caring for patients through to the end of life. This is a very generalist physician model of care for the dying which works best in non-urban settings.

However, despite the improvements made, there are still some gaps in care, and that led to the development of our model of campus of care for rural palliative care.

Those of us who are working to improve the care of the dying in small communities are motivated by our desire to mitigate the suffering of our patients and their families. Nothing will be accomplished without an understanding
[ Page 283 ]
that the most important resources in palliative care programs are the human ones: the family physicians, nurses, pharmacists, social workers, hospice volunteers and others who make up a functional community palliative care team.

Any capital or operating funding models for rural settings really need to support that human capacity that is, in many cases, already quite strained and, in some cases, at the point of burnout.

If you refer to the second report that we, the Shuswap North Okanagan Division of Family Practice, submitted to a steering committee, you’ll see that we did hire a consultant to write up a business plan around the idea of a campus of care for rural palliative care. Our intention of design of this model is to really look at the cost of both capital and operational funding for this concept, which we call an integrated palliative campus of care.

Palliative campus of care, as a model, borrows from a concept used originally for progressive seniors housing. When you apply it to palliative care at the community level, the concept suggests working within the local structural and human resources to provide optimal collaborative care for dying patients in all settings — acute, residential and in the community. The model would look different for each rural community, depending on what resources are available.

One of the central features of a campus-of-care design is a physical space where team members can create supportive networks both among the team and into the larger community. We visualize this campus-of-care model as a hub with spokes, in contrast to the pyramid model more commonly portrayed in population-based models for palliative care. You’ll be familiar with these different models from our business plan report.

The pyramid model is a pyramid, and at the apex of the model, there’s a specialized team. The implication is that the specialists take over the care of the most complex cases. This works well in urban settings where you have specialized palliative care units. It also presupposes for rural communities that individuals can and want to leave their home community for care at the time of death. But for most of rural B.C., we know that’s not the case. People much prefer to die close to home with networks of friends and family around.

The vast majority of rural palliative deaths can be managed by a team such as ours if given the appropriate infrastructure and support. In the very rare event that we need a higher level of expertise, we are able to access it within our current system. My final story illustrates this for you.

A young child living in the rural outskirts of our community was recently facing an aggressive cancer with no potential for cure. The parents, needless to say, sought any option to prolong their child’s life and spent time at B.C. Children’s Hospital and at Canuck Place in Vancouver with specialists in pediatric palliative care. However, in the end, they decided that the best option for their child and their remaining family was to plan for a home death, surrounded by their very strong support network of friends, family and church. The family physician was also a family friend, and he attended this child at home with the assistance of our community palliative care coordinator.

When my colleague needed advice on how to manage issues that came up in the case, he was able to discuss the care with the pediatric team in Vancouver. After the peaceful death of this child, my colleague received several phone calls from the specialist physicians in Vancouver who had been involved with the case initially. They asked my colleague how things had transpired with the dying process and were concerned about his own well-being as a doctor.

These simple phone calls meant a great deal to him. In these types of circumstances, it helps to share the burden of care and of grief with colleagues. Without a doubt, this family received excellent care, and the generalist physician and palliative nurse were able to provide this because they felt well supported by the provincial experts based in Vancouver.

At times, specialist assistance can be extremely helpful. Even at arm’s length, it can greatly support a patient and the team of caregivers in the provision of excellent palliative care.

Our campus-of-care model supports the generalist physicians that care for the majority of dying British Columbians. This model can be visualized as a wheel. The hub of this wheel is the community hospital, which is inevitably the focal point for provision of health care in a small town. The spokes of the wheel reach out into people’s homes and residential care facilities in the form of community nurses and pharmacists, hospital volunteers and neighbours. The generalist physicians in the rural setting follow the patient wherever they happen to be, from home to hospital and back again, if need be.

Without the coordination of care provided by the campus-of-care model, services can become fragmented and strained. People may lack confidence that they can face terminal illness with a sense of trust in their local services, and this fear places an additional burden on patients and family members.

The SNO report identifies how a campus-of-care concept can be applied to varying rural settings, depending on the local resources and desires. At its core, it is designed to bring the team of care providers together at one site, supporting them in skills development and burnout prevention, providing for economies of scale and allowing patients and families to have one location and team to turn to, regardless of the desired location of death. Our imagined model site would also provide learning opportunities to medical and nursing trainees who hope to practise in the rural setting.

A well-designed campus of care would allow individuals dying at home to seek direct care when needed without lengthy waits in an emergency department for pain control. It would allow a gathering place for palliative
[ Page 284 ]
day programs, bereavement support and multidisciplinary palliative team rounds. In some cases, it would include community hospice beds for individuals requiring admission for pain control or respite care in the event of caregiver exhaustion. In other cases, patients would require acute care hospitalization but in a designated bed with privacy and space for family and visitors. Better supports would, in turn, allow many people to stay at home longer or die at home.

The overarching goal of good palliative care is to improve quality of life until the time of natural death, which ideally would occur in the location of the patient’s choice. This model supports that aim.

At this point, our campus-of-care model is just an idea. The Interior Health palliative care working group’s strategic plan does propose the idea of a pilot site for a palliative campus of care associated with the Shuswap Lake General Hospital in Salmon Arm. If this component of the strategic plan is endorsed and supported, we hope to see similar sites in smaller and larger communities in B.C.’s interior. In collaboration with researchers at UBC Okanagan, we have proposed an evaluatory framework to ensure we learn the most we can from these proposed pilot sites.

In conclusion, there is a unique challenge before us in improving care for the dying in rural British Columbia. In response to that challenge, the Shuswap North Okanagan Division of Family Practice advocates a generalist-based model of care that both recognizes the strengths of small communities and builds capacity within the context of available resources.

We hope to make further progress in accordance with the Interior Health Authority palliative care strategic workplan, which proposes a pilot site at Shuswap Lake Hospital. We feel that the evaluation of any such project is essential, and we hope to incorporate opportunities to train future family doctors and nurses to be skilled providers of high-quality palliative care to rural British Columbians.

On behalf of the Shuswap Lake North Okanagan Division of Family Practice, thank you very much for the opportunity to speak today. I’m happy to answer any questions.

I’m just going to ask one first myself. How much influence do the doctors have in how their patients are going to end their lives? In other words, if the doctors as a whole in the province, and more specifically in rural British Columbia, said to the health authorities, “This is not the way I want to see my patient end his or her life, in a four-bed acute care ward,” do they have any influence in how the money is spent in creating something like you have just described?

It seems to me that they are a powerful entity. If they were 100 percent behind not having their patients die — like they do now, I know, in small rural communities, like where I come from — in that four-bed acute care and they said, “No, that’s not where I want my patient. I want them to be in a hospice-like setting” or “I want something else,” do you feel that there’s any influence there, from the doctor side, that would make a difference to moving this type of thing forward?

J. Bratty: Well, that’s a wonderful question, because I started on this four years ago, and I’m sitting here before you today hoping that we have some influence. I think the initiative of the divisions of family practice has been a very positive initiative. I think the previous presentation demonstrated that — that there’s a huge amount of creative and really productive ideas that can come from the medical profession — but we don’t hold the strings to how the budgets get allocated, right? We can propose things.

I sit on the Interior Health palliative care working group, and I work closely with all the people who are trying to move this type of project forward. But the physicians are just one part of the process, and fundamentally, I think there is a societal and a cultural shift that needs to take place, right? It’s such a complex topic. I would hope that we have some influence, yeah.

L. Larson (Chair): I would too. I would hope that all of the doctors were thinking along that same line, you know. Mostly, people that I know are dying in those wrong settings, and I keep thinking: “Can’t the doctors say, ‘This is not where I want my patient to die’?”

J. Bratty: Patients also need to say where they want to die. I think it comes from both sides.

L. Larson (Chair): Well, yes. But you know what I mean. I just wondered whether they may have some influence as an entire group in how we create a new system as well.

I was struck that you’ve got a very detailed, including financial, breakdown about how all of this would work. It’s not so much all the details of the finances, but I’d like you to just…. I’m looking at page 36. I think it was also on an earlier page, but page 36 breaks down the staffing side of it, and there are also capital costs.

I wonder if you can just paint a picture of what this would look like in practical terms. How much of it is…? There are renovations on the…. There’s some infrastructure stuff, but there are also some very specific staffing needs identified as part of the team — some existing and
[ Page 285 ]
some new. Can you just talk a bit more about how you see that working?

J. Bratty: In the process that we went through with the business plan and that was completed in the last year, we sort of created what would be the best-case scenario that we could look at, knowing that we have an enormously supportive community in Salmon Arm. People have been asking for years: “How do we move ahead with this? Can we get some money to build something? Can we build a hospice house? Can we do this?”

We know that in terms of capital outlay there’s really not a problem in our particular community to build something. And that, I think, is the experience in a lot of small communities. People are very ready to come up with funding to build something, right? It’s the operational, ongoing costs of staffing that really can’t be supported by the community, and that is where the health system needs to start kicking in.

We designed something that had three actual patient beds in our facility — a best-case scenario projecting future population growth in our region. That is one possible model, and that is a fairly expensive model from that business plan. As I mentioned in my discussion, I think that’s not necessarily the model that would work for every community. It may not be the model that we end up with in our community.

If you’re looking at staffing expenses with nurses and social workers and overnight coverage and things, it becomes a slightly different design than just the idea of a hub with a support network where people might be in acute care beds in the hospital right next door or being supported in the community and residential care. I think we need to look at the community as a whole when we’re thinking about a campus of care with this concept of a hub where all those services come back and go out from. So the actual staffing…. The biggest part of that expense is the salaries for the nurses, LPNs, and administrative costs and things.

I don’t think capital costs are a problem for most small communities because I do believe that people support wanting their community members, friends and family, to be able to die close to home.

J. Darcy (Deputy Chair): But the physician costs are built into the work of the physician. Therefore, that was not there.

J. Darcy (Deputy Chair): And the social worker and pharmacist were considered current staff. So it’s the registered nurse, practical nurse, nursing assistant, care aide….

J. Bratty: Yeah. And that’s presuming you have admitted patients in that facility. Depending on the size of the community, there are different gradations — whether you would actually have patients admitted to the facility or right next door.

The more expensive version, which is what we costed out…. Our idea was to have three beds for those types of what we call community hospice beds — how that’s been defined provincially. In fact, I think Doris Barwich is presenting today, and she would probably have a definition of how we’re defining palliative beds as either acute community hospice and then community spaces.

The idea that we can increase hospice space in the province was proposed in the throne speech two years ago. That has since been broken down into three types of bed spaces.

J. Darcy (Deputy Chair): It’s the community piece of it that I’m still not sure about. If people want to die at home, is it that same team?

J. Bratty: Yes. What I was really trying to emphasize is the generalist model. The existing family doctor that might have known this family for 20 years or ten years can support that individual wherever they are — in their home, in the hospital, in a campus-of-care or sort of community hospice type of bed. But there’s that sense of being known to your care provider and that mutual sort of connection and knowledge of each other, which are so important.

D. Bing: I’m just wondering. Are you aware of any other areas that…? I mean, these problems must be common in other provinces, states and countries. Are there any other programs or models where, you know, they seem to have it right, and they’ve got it, and maybe we should be emulating them?

J. Bratty: Yes. If we compare British Columbia to other comparable areas…. You have to look at sort of other areas with dispersed populations and geographic challenges and winter, right? Australia has interesting rural palliative care models, but they don’t have the issue around winter and mountains and difficult roads and things. Their proposal is a population-based model with very much a pyramid sort of model of care. Campus of care as applied to palliative care — this is unique to British Columbia at this point, this idea.

There has been progress in Courtenay-Comox. The hospice society there has shown leadership on this, and they’ve sort of designed what they’re calling a campus of care, which is in the residential care wing of St. Joe’s Hospital. They actually have it up and running. They received funding from their health authority, and they’ve made progress in that direction.
[ Page 286 ]

Again, that’s a nice example of how every community will look somewhat different. But in terms of applying it to palliative care, this is actually new, as far as I know. I’ve looked in the literature, and it really is applied much more in terms of the seniors housing concept elsewhere. It comes from the States originally.

L. Larson (Chair): Thank you very much, Dr. Bratty, and for taking the time to be here in Vancouver. We do appreciate it.

L. Larson (Chair): I’d like to welcome the Canadian Centre for Policy Alternatives and ask you to introduce yourselves and just go right into your presentation.

I. Ivanova: Thank you for the invitation to appear before the committee. My name is Iglika Ivanova. I am a senior economist at the CCPA at the B.C. office of the Canadian Centre for Policy Alternatives. With me today is Marcy Cohen, a research associate with the Canadian Centre for Policy Alternatives, who has led a number of studies on best practices in health care reform. I’m going to start.

Our office has been engaged on provincial health care issues for a number of years. Since 2004, we’ve published about seven studies looking at the restructuring of primary and community care and how to structure our health care system better.

Our research has led us to conclude that moving to a team-based, integrated service delivery for primary care would greatly improve our health care system, including in the area of end-of-life care, on which you’re focusing today.

This is why our presentation today will focus on this broader question of how to move to team-based primary care across the system, not just in end-of-life care, because we believe that this should be a centrepiece of health system transformation in the province.

This was one of the four questions you’ve posed in the public consultation that happened last fall. You know, as I mentioned, it is key for insuring the sustainability of a high-quality, public health care system like the one we have in B.C.

The reason why this question is important — or how to move to team-based care is important — is because it really focuses attention on a game changer in the system. Team-based community care has been demonstrated internationally to deliver effective, high-quality care at a lower cost than the traditional, more siloed, physician-centric model of health care delivery than we have now — the traditional office of a single family doctor.

Getting primary and community care right is very important, and Canada has a number of challenges in our health care system, including the need to better support seniors in the community, to avoid unnecessary hospitalization, to provide more palliative care at home, especially in the rural and hard-to-access areas, and to reduce surgical wait-lists.

I want to tell you a bit about the history of primary care reform in Canada, because this isn’t a new idea. Beginning in the mid-’90s, there was evidence of the critical importance of primary care starting to emerge from international studies.

Two major commissions on health reform, the National Forum on Health in ’97 and the Romanow commission, both recommended that Canada needs to strengthen its primary care system. This led to the federal government, for ten years between ’97 and 2006, targeting funding to the provinces specifically for primary care reform.

The reason to focus on primary care reform was based largely on the seminal research of Prof. Barbara Starfield, who was an American pediatrician, health services researcher and professor of health policy at Johns Hopkins. She’s internationally renowned for her research on primary care. She conclusively found that across the industrialized world, countries and regions with strong primary care orientation have lower costs, less medication use, better health outcomes and lower health inequalities.

While the focus on primary care reform has been positive and has been on since ’97, the challenge so far is really how to define primary care and whether it’s just focused on the traditional doctor’s office that we all know or it includes a broader definition of primary care with a broader team of health professionals and paraprofessionals who work with patients in both primary care and the community settings.

The way this line was drawn over time has varied, depending largely on the power and influence of doctor’s organizations, who lobby quite hard on keeping the doctor’s office kind of a central point in the system — how powerful they are versus the leadership that’s provided by government or broader provider groups in communities, which usually recognize the need for team-based care rather than physician-centred care.

A number of CCPA studies have concluded that a broader vision of primary care is the best way to go forward and should become the standard of practice in B.C. We’re not the only ones to do so.

The Romanow report in 2002 also recommended that a much broader group of people than just the family doctor be involved in the delivery of primary care. We’re talking about health professionals like registered nurses, nurse practitioners, LPNs but also paraprofessionals like com-
[ Page 287 ]
munity developers, mental health outreach workers, clinical social workers, pharmacists. They all have a place in providing a wider range of services — prevention, health promotion and chronic care management — than what’s typical in today’s family physician office.

As I mentioned, we’re not the only ones to come to this conclusion. Other leading national policy and professional organizations have come to the same conclusion and support the idea that team-based care should become the standard of practice.

Here are a couple of examples. In 2011, the Wait Time Alliance, which is an organization of medical specialist groups, and the Canadian Medical Association — they represent physicians — concluded that the most effective strategy to reduce wait times in emergency rooms and for elective surgeries was not to provide more surgery funding but to improve access to community care for seniors.

This would reduce the number of hospital patients who no longer need the hospital care services but cannot be discharged because the community care they require is just not available. Dealing with those patients would help free up space and speed up access to surgeries, and the Wait Time Alliance has argued that it’s best done by interdisciplinary team-based care.

Another example recently is that in 2012, the Conference Board of Canada — which, as you know, is a business think tank — organized a summit on sustainable health care and brought together opinion leaders and experts to talk about what’s necessary, coming up with five priorities for reform.

The first of those priorities was — the bullet in here is a quote — “a strong consensus that interdisciplinary family care teams should be the standard model of primary care” and that those teams “should be expanded and strengthened in all provinces and territories” and include a clear focus on seniors and other vulnerable populations.

These are just a few examples of the growing support for team-based care delivery. Marcy will take it over.

M. Cohen: I’m going to talk a bit about the research behind this argument for team-based care, in terms of quality, cost-effectiveness and increased access. What we know today is that 80 percent of physician visits have to do with chronic conditions and that two-thirds of admissions through emergency — medical admissions to hospital — are due to chronic conditions.

We know that if you’ve got a chronic condition, it’s not one episode. You need care that’s longitudinal, that’s over time. You need care that’s coordinated, because there are likely to be other practitioners involved, and you need care that’s comprehensive. So you also need to include things like education for patients to manage their own chronic conditions, because the evidence is that people do better then and use less health services.

One of the studies that was Canadian-led looks at what the gold standard is in research, which is randomized control trials. They looked at what those teams’ members were that made a difference, and they found that they were case managers, who could help make sure that the person was cared for on a longitudinal basis; the nurse practitioner, who could also make sure that the care was coordinated; and the patient educator to work with patients.

Looking at those 36 studies, what difference did it make? The difference it made is that people used less emergency rooms and less hospitalizations, primarily and particularly for older people, but also for the whole population. That is also what makes them more cost-effective.

In the U.S., there are some non-profit health maintenance organizations that have really worked towards this team-based model, based on the research. They’ve been tracking the cost issues, and the majority of them have found so far that there are overall cost savings. So investing in a team leads to overall savings in the overall health system. Just like Barbara Starfield found, investing in primary care leads to an overall saving in the health system.

The third issue around access I’m going to spend a bit more time on because it’s a bit more complex. We are dealing with this physician shortage, but at the same time, there are actually more physicians per capita in Canada than at any time in our history. We’re graduating more physicians not just in B.C. Right across the country, they’ve increased medical schools.

We have more physicians but we have more of a physician shortage. How do we square that circle? The reason is because there is this long-term trend for physicians to work less hours and a real reluctance of physicians to go to rural communities and then a growth of walk-in clinics, which are very convenient but very narrow.

In terms of the hours of work, there was a study that was done by the national physicians organization. Graduating physicians — 60 percent said the most important criteria for having a fulfilling practice was being able to balance family and work life. Okay. That’s like the fact that 50 percent, or more than 50 percent, are women now. You can say that. But it’s also true for the men, because both parents in families work nowadays. So it is a general trend and a real difference between older physicians and younger physicians.

Some interesting support behind all this is some basic research, which is pretty new, that was done by the centre for health policy research by Kim McGrail. What she did is she tried to divide physicians into low- and high-responsibility physicians. She looked at physicians — you know, they have a big database — who did various kinds of on-call or referred to different people, ways that you could identify that they were doing this kind of coordinated comprehensive care. Really, you’ve got way
[ Page 288 ]
too many physicians in the low-responsibility side. It’s, again, another proof that we need to more towards this team-based care.

But the other interesting thing that came up is that there’s a real big difference between younger physicians and older physicians. Amongst the younger physicians under 35, I think it is, something like only 8 percent of them are high-responsibility practices; 55 percent of them are in low-responsibility practices.

What appears to be happening is that they’re making choices to go into walk-in or other types of clinics where they don’t have to be on call, where they can manage their kids and their families. This is clearly a problem for us going down the road. I think it’s an area where we need to do more research and look more deeply.

We’ve already said that the research shows you’re going to do better at providing comprehensive care if you have a team, but what it also shows is that it helps physicians in terms of work stress and control of their hours of work. That’s because they know that if they’re not there, there’s a nurse practitioner who could follow up. There’s a case manager. There’s somebody else taking the time to do the patient education. So even if they’re not there all the time, their patients are getting good care. That backup for physicians really reduces stress.

The other interesting part of this is you’ve got younger physicians more willing and more open to working in team-based settings than the older physicians, because older physicians aren’t used to it. It’s not something that they’ve commonly done.

Then just one point around rural. There’s not a lot of research that’s been done on this. But there is, in Ontario, community health centres that have been around for a long time. I’ll talk a little more about them later, but they are an interdisciplinary approach to care. They were given additional money in 2008 by the Ontario government, and half of that money they used in rural communities. They built a lot of annexes connected with their other community health centres, and they reported that it was much easier to attract health professionals when you had teams, that they were much more willing to go to small communities when they weren’t the sole person responsible for those patients 24-7. It kind of makes pretty good sense.

Where we need to focus now is: okay, why isn’t it happening, what are the barriers, and how do we overcome those barriers?

We decided to turn to the Conference Board again here. We’re turning to the Conference Board because I think it’s important to understand that there are lots of very mainstream groups, which don’t always agree with the CCPA, that are saying exactly the same thing that we’re saying on this case.

This is some research that was done by the Conference Board. What they found, by talking to health professionals, is that the most significant barrier to interdisciplinary, collaborative, team-based care is fee-for-service. It’s a barrier because the way the money goes…. It goes to the physician. They can’t give the money to someone else. It has to go to them for their care. If the nurse practitioner does it, they don’t get paid. It just doesn’t work. It doesn’t work together.

A similar statement came from the Alberta Medical Association. They’ve had more push from their government to try to move in some different directions, and they did come up with a statement where it says: “Fee-for-service does not incent or align with comprehensive team-based care.”

I’m going to talk a little bit about those alternative funding mechanisms and where they’re in place and how they might work. But just for a minute, and very quickly…. Some of the other changes that came up in the Conference Board — what needs to happen — are that there needs to be…. I’m not going to spend a lot of time on this, just a second. There needs to be strong leadership and governance in primary team-based care.

Actually, some of this is true of any physician’s office. Increasingly, the best primary care is one where they have a lot of feedback on how they’re doing from their patients and from the health authority in terms of costs and in terms of the timeliness of care, and they have a system in place to continually improve what they’re doing. I’ll talk a bit more about that later.

Also, that leadership is needed in terms of: if you’re going to work in teams, you need to support different practitioners to understand what each other can do and make sure they’re working to their full scope — really create mandatory education for people on how to collaborate. Working together in teams is not something that we’re trained or we naturally do very easily.

Now to the alternative funding models. Here again — and you’ll see a certain theme coming up here — there is evidence from B.C. that younger physicians…. Actually, the majority of them prefer non–fee-for-service. They don’t want to be running their own businesses. I think that’s something to look at in terms of these alternatives.

It’s understandable. If you’re near retirement and you’re a fee-for-service physician, you don’t want to start thinking about having to figure out a whole other way to have to fund yourself and organize your practice. The resistance comes from some very practical places, but I think we have to consider that in what we’re looking at.

The first alternative here is capitation. Capitation is where the money goes not to the individual physician. It goes to the practice. A certain amount of money is given for each person each month. If it’s a good capitated system, the amount of money that goes is adjusted for the complexity of the patient. Obviously, if you didn’t do that, then the tendency would be to get patients that were easier to look after because you’d get more money.

There’s a complexity measure when it’s good. Then it comes to the practice, and the practice can look at their
[ Page 289 ]
patient population and say, “Okay. Who do we need here? Do we have a lot of people with psychiatric problems? Do we have a lot of older patients?” and then decide what kind of a multidisciplinary team to set up.

We’re actually pretty lucky here in B.C. We have, for ten years, a very successful capitated approach in one of our towns — Langley, seven practices. It came out of one of the federal funding initiatives that we described earlier. They have a really good complexity measure. It’s built in, in fact, already to our MSP system, so it wouldn’t be that hard to scale up.

They have a very multidisciplinary team. They have a lot of loyalty. They report that they have a lot of patient satisfaction. They also report that they have lower hospitalizations. But notice I said: “They report.” There hasn’t been any external eye on this, looking at it. It is in part because of opposition from the older, established BCMA to this kind of approach. So it’s been left alone, but it really….

If we’re going to think down the road — and I think this committee is about some long-term planning — you really need to look at that system and how it works. As you’ll hear me say later, even Terry Lake is saying that teams are the way of the future. This exists in many other parts of the world. We need to look at this kind of approach, and I think you could have a good role to play in that.

The next one is salary. There’s kind of a feeling that if you go to a salary model, people won’t do a good job. There isn’t any incentive for quality. But the largest non-profit health maintenance organization in the States, Kaiser Permanente, has a salaried model, and it has very good-quality care. It manages quality by doing those other things I mentioned earlier, by having a very strong leadership and governance structure to make sure that you get reports, generally on patient satisfaction, timeliness of care, costs of care. You build in ways to improve that care based on the data, based on information.

In Canada, we’ve had community health centres since the beginning of medicare. They are a multidisciplinary, salaried model. In Ontario, there are the most community health centres, and the most research has been done on them. They serve primarily high-needs, low-income communities, both rural and urban. They have a community governance structure. They generally have a broader range of services than is in a traditional medical office.

What the research shows…. Ontario has a number of different funding models — fee-for-service, capitation. But compared to the other funding models, they do better in managing chronic conditions — again, primarily by reducing emergency room visits — and they serve a higher proportion of psychiatric patients than other practices. So I think they’re an important model to look at.

Then, interestingly, in Alberta, they were, in 2012, really moving very much towards a community health centre model but coming right from government, so saying…. They’ve been trying. They’ve been a leader in primary care reform. They’ve tried to do a lot of things. They’ve really supported physicians to provide more comprehensive care, but they found that there were these underserviced communities.

What they did was they looked across the province at: where were there communities that were underserviced, where people had high needs and low income? In those communities, they prioritized putting in a collaborative model that included salaried physicians, community input — very similar to community health centres. They have not gone as far on that as they might have because of the economic issues currently in Alberta.

I did talk to the person who was responsible for it. This is where my theme of youth comes out. I told her what I was doing with this. I told her that we were coming to a committee. She said: “Well, if you tell them one thing, tell them to focus on the younger physicians. They’re more willing to do this. Don’t try with the older physicians. They’re used to doing things in the way they are. Even if they know it’s a good idea, they’re not going to change.” That was the message from Alberta.

What have we done in B.C., and why do we need to think about changing what we’re doing here? The strategy in B.C. has been largely…. Iglika mentioned that there has been a change over time about how broadly or how narrowly to fund primary care.

In the beginning, the first round of primary care funding was non-fee-for-service collaborative. Then there was this lobby from the physicians organization saying: “We don’t want you to go there.” Of course, people want to work with physicians, so they said: “Okay, let’s try to do it fee-for-service.” You know, they are key to our system. So they’ve really focused on financial incentives to give to individual physicians if they’re caring for someone longitudinally with diabetes or a heart condition.

If you look at the evaluations, the positive evaluations are for people who are either a part of that program or contracted to it. More critical, if you look at the report from the Auditor General or if you look at the research from the centre for health policy research.

It’s not just in B.C. The U.K. went very majorly into incentives, and they’ve now established that it was very costly and didn’t make a huge difference. Those physicians that were providing comprehensive care continued to provide comprehensive care, and those that didn’t, didn’t.

In B.C. we don’t even know because we don’t actually monitor what they do. There’s no independent monitoring, any of that. If they say they’re caring for people with diabetes, we don’t know if they’ve done something different before or after the incentives. We just don’t know.

One thing I’d like to mention in terms of incentives is that there is some value, I think, in incentives for teams. In Kaiser Permanente, if a team does really well, they give them a financial incentive that goes to the whole team.
[ Page 290 ]
They decide to share it equally or to use it to increase their services. In some places, they mandate one or the other. In the U.K., they’re thinking the same thing, and I think it’s something that would be worth considering.

I think that this committee is really timely. I think it is time to ramp up and rethink the primary care reform. I think you even see that clearly from the Ministry of Health talking about this more seriously.

Then you have the quote from Terry Lake. This quote is from September 2014 at the UBCM conference, where he says: “Not everybody is going to have a GP for everything. That sort of model is historic, and teams of health professionals now is the model. The sentiment is still there to make sure everyone in B.C. is connected to primary care, but it may not be a stand-alone GP.”

That’s on one hand. On the other hand, there was a negotiation with the BCMA, Doctors of B.C., that entrenched the individual incentives for five more years. So there are contradictions and, obviously, different forces at play. That’s the reality that we’re all working with.

Physicians are extremely important to all of us and to the health system, but I think there is this real generational divide. I think that gives us some opening and something that we can work with.

I also think there are other areas — and things that are happening already but just need to be more systematic — where there would be more openness to teams. Certainly in the palliative care area, we’re hearing from physicians that they want to help their patients stay at home. Can’t do it. They don’t have the team to back them. There aren’t the care aides and the nurses there to make it safe for them as physicians to recommend that people are cared for at home.

There are these high-needs areas. You’ll see with the mental health clientele — or potentially, in rural communities — the beginnings of team-based care and some initiatives happening locally. I think those are the areas — it’s similar to Alberta, where you can look at people that are underserviced and high needs that are costing the health system a lot — where you’d have much less opposition and more support from Doctors of B.C. and a direction to move.

Having said that, I think…. I read over our report, and it had a lot of detail in it. Just to try to cut to the chase here, I think what would make sense would be for this committee to visit, investigate, somehow find out more about some of these good models — like Langley, like the community health centres, like the Alberta model; there’s Puget Sound Group Health — and really look at what they’ve been able to achieve, what the barriers and problems are. Then bring together a stakeholder group of people in B.C. to talk about what kinds of recommendations come out of those learnings and prepare a report to the Legislature that would provide some direction in terms of how to move forward.

I think, at this point, it would really probably be welcomed by the ministry, in terms of some of the things that they’re trying to do and some of the conflicts that everyone’s tried to negotiate.

L. Larson (Chair): Thank you very much. Extremely interesting and certainly paths we have been walking down. You have given us a little more meat in that process.

J. Darcy (Deputy Chair): Well, thank you very much for a wonderful presentation and for sort of getting right to the heart of the matter and being incredibly practical in your recommendations to us. This is an issue that we’ve heard in various ways from different people, and it’s something we know about anecdotally, but it’s very helpful to have brought it all together in one place — some of the figures, especially, about young doctors and where people are going to practise, which we know is happening out there but haven’t had the hard numbers on it.

I’m particularly interested in your very practical recommendation about what the Select Standing Committee on Health should do next.

I wonder if you can just talk a bit more about what you think those positive models are that we should look at in B.C. and elsewhere. You’ve touched on some of them, but if you could just go into that a little bit more. I gather you’re suggesting we investigate them and bring people together for a conversation.

M. Cohen: A part I don’t know is what the committee can do, but I know that in the past you’ve been able to commission research, and I know that you can actually bring people to visit. I would say that pulling together what you can, in terms of some of those models.

There’s the Langley capitated model, but there are also a few in Vancouver. I don’t have them off the top of my head, but I can get them for you. There are a few capitated models in Vancouver, and they’re actually having a discussion about this at the end of the month with the division of family practice. They are bringing a number of those models together.

It’s also worthwhile just asking the health authorities for their good models of team-based care with specific populations. I think there are, particularly in the north, still some community health centres in some of the smaller communities — in Hazelton, and around there. I think that’s worth looking at. In Prince George, there is. I think the divisions can tell you, or the ministry can tell you, where there are existing models — so that for B.C.

I think Puget Sound Group Health is really, really interesting. It’s Seattle, so it’s a parallel community. They have done really, really well. They are very focused on primary care. They have a very high research component. They’ve really worked on bringing the costs down, not
[ Page 291 ]
by incentives — they tried that; it didn’t work — but by reorganizing their care. They actually have some people that get half-hour appointments now, and they do a lot of their work by telephone and by e-mail otherwise.

They have a computer system. One of the things they were able to show when they did this reorganization is that by getting immediate response from urgent care centres, they were able to pay for all of the costs. If somebody was at an urgent care centre, that means they were not being looked after properly by primary care. So they brought them right into primary care, and the savings from people not going to urgent care centres ended up recouping all the extra investment they made in the primary care within two years.

I can definitely give you the names of people from Puget Sound Group Health, and it is a salaried model.

I am an aging physician, so I’m sure my comments will be interpreted through that filter. But the big message is: skip a generation. Right? You do have to go to the young doctors.

There are some issues you have highlighted, though, that I think are very important. This number from the Centre for Health Services and Policy Research, if true…. I’m assuming it applies to general practitioners, not all.

M. Stilwell: So 8 percent full service. We’re producing 288 doctors a year, so we get 24, basically, at most, high-performing family physicians. I suggest that’s not a very good return on investment, and I wonder if there’s research about social contract. It costs us a lot of money to produce a doctor.

Low service. Low responsibility, to me, is low knowledge. If it doesn’t start that way, it will become that way. I think you can see that that’s quite likely. So if you have a low-service family physician and a nurse practitioner, I think you’re paying for one person too much. You have to be paying for some level of knowledge and service at the rate you’re paying physicians to make it, I think, a reasonable burden for taxpayers.

M. Cohen: Yeah. I would say a few things about that. One is that it shows throughout all physicians. There are too many physicians that aren’t providing comprehensive care, right? But I think it is this challenge of being on their own, and what people need to do is increasingly complex nowadays.

M. Stilwell: No question. For instance, your point about attracting people to rural and remote areas — I do think that financial incentives are not what the issue is. It is support in a very high-pressure environment.

I just wanted to talk about capitation and salary and so on. I’ll just say that. I haven’t looked at it for awhile. I am familiar with Kaiser. Kaiser does many things very well, and they do attract young physicians now in the U.S. The average age of a Kaiser patient is in their 40s, I believe. You can see that that is going to have impact on how services are provided.

I’m not aware — and you may be — because I haven’t looked at it for a lot of years…. I don’t know of a successful capitation or salary system that does not have shadow billing. They might not bill fee-for-service, but the physicians have to bill, because where you don’t have fee-for-service, you don’t get service. That’s why governments don’t stick with it.

I’ll just end that by saying that I was in Ontario recently and met with several young people who’d just finished family practice, and they cannot get a spot in these community health centres anymore. The government is now pushing them into fee-for-service practices again. I think they said it was too expensive.

M. Cohen: Right. I mean, we’ve had…. You know what? It is more expensive to have team-based care. If you only look at that cost, it’s going to be more expensive. If you look at the overall costs in the health system, the costs are lower, so it has everything to do with that.

We had the same thing happen here in Vancouver, right? I don’t think that community health centres have had shadow billing, and I don’t think that all of the salaried models have shadow billing. The thing about quality isn’t…. You do need something in addition to the salary, and you do need this quality side to it. But the quality side isn’t based on money; the quality side is based on having a system in place where the way you do things….

You’ll really see that if you look at Puget Sound Group Health. They have morning meetings with their physicians every day. “This is what we’re hearing about your patients. This is where there are concerns. This is what’s going on. You need to improve quality.” They do that entirely in a salaried system, because it isn’t just salary they have. They also have these other measures of how to improve quality.

I do think that that’s changing. I honestly don’t know if the capitation systems have the fee-for-service shadowing, but I think for all of them, wherever you are, that quality piece needs to be there more than it is now.

We’re reluctant. I mean, it needs to be led by physicians, because there’s really a reluctance for physicians to listen to bureaucrats. It’s successful where it’s led by physicians. I understand that. But it needs to be done.

M. Stilwell: The quality and productivity don’t always go hand in hand. That’s kind of the argument around this. You have to pay….
[ Page 292 ]

M. Cohen: Well, no. The argument is that quality and productivity do go hand in hand. The productivity comes from people not going to hospital as much. So the productivity happens that you don’t have as much use of acute care.

That research by Barbara Starfield established that primary care — systems that have strong primary care — do better internationally. It’s on quality and cost effectiveness. That is the beauty of the system. Here is a time when it actually goes together.

But you need to look at overall health system costs. Have you got a system like now, where this budget goes for here and the doctors’ budget is over there separately, and, you know, one doesn’t…? I mean, that’s what happens with the health authorities, right? They don’t look after the doctors’ budget, so they don’t care how much money gets spent there — vice versa. Nobody’s looking at the overall health costs.

M. Stilwell: I’ll just end by saying that we agree that a system like Kaiser, first of all, is not influenced by four-year political election cycles. They’re going to be in business for a long time, and they know that. They can manage that full budget for the returns on investment in primary care.

R. Lee: My question is: is there any research on an optimum size of, say, a community centre? Say, how many physicians per nurse or physiotherapist? That kind of thing. Also, what kind of paraprofessionals should be there?

M. Cohen: There’s quite a bit of research on how big you can get your panel size with different, other professionals. I can’t list it off the top of my head, but there is definitely a lot of research.

What kind of…? There’s lots of evidence that nurse practitioners are really helpful in terms of longitudinal care. That research is firmly established. In terms of the other paraprofessionals, it depends a lot on who your patient population is. If you have a lot of psychiatric patients, then having a mental health outreach worker is really important because you’re making sure that the person isn’t in crisis and going to end up in hospital, because there’s somebody in contact with them regularly, right? There isn’t a formula overall. It depends on your patient population.

I would say, with a place like Kaiser, I’m sure there are different patient populations in different places. It’s a big organization. Some would be younger, some would be older, and some would be higher needs. You have to look at that. That’s what they did in Alberta, right? They took each community. They looked at who was in the community, and then they listed all the different kinds of paraprofessionals and other health professionals that there could be and adapted them based on what they understood were the needs of that particular community.

D. Plecas: The one thing that I have a concern about is your finding that there’s only 8 percent of physicians who are involved in what we’d call high responsibility practice, whereas most of them are in low responsibility.

I’m also reminded that we also have, at least I’m told, increasing numbers of physicians who don’t want to work here or there or in remote areas. One might look at this and say that we seem to have a collection of physicians who don’t want to do the job as it needs to be done. So when somebody says to me, “I want those same people to start working with teams. I want those teams to be taking a more lead role,” I worry about that.

I’m seeing that they’re saying: “Back off. I don’t want anything to do. I only want to be open two days a week.” There’s all of this going on. So I’m wondering if it would be helpful if we spent more energy looking at why this is the case, other than…. Obviously, there are some other things going on with the changing demographic of who comes in to be a physician, but this is scary to me.

M. Cohen: The 8 percent is the younger physicians. This is new research, so I think it’s an area that does require more investigation. I think it does, absolutely. But I think what you’re dealing with is the pressure that we’re seeing in our society in a lot of places. Two parents have to work full-time nowadays to make a go of it in Vancouver, with our housing prices. You can’t do that in the workload that older physicians have. They work 12, 14 hours a day, lots of them, doing house calls, doing all this work.

When I did this presentation, it was clear to me that…. It was in another event, but it was with somebody who had been president of the CMA at one time, and it was something around their interest in seniors care from the CMA. He said: “Absolutely, there’s a generational divide.” He started talking about younger physicians “not wanting to work as hard as us, and we work really hard, right?” But I think it’s the circumstances that people are under.

I think that if we made it easier and possible for those younger physicians to have some control over their hours of work and be part of something where they were providing good-quality care, they would do it. We need to talk to them more about that.

L. Larson (Chair): Thank you very much. Incredibly interesting, and my goodness, yes, you’ve given us a pile of stuff to consider and go through and some really good areas to investigate further. So thank you very much for your presentations this morning. We’ll no doubt be talking to you again at some point, I’m sure.

Good morning, Dr. Barwich. I’ll let you introduce yourself and go right into your presentation. Then we’ll have time for some questions.

D. Barwich: Good morning. I’m Dr. Doris Barwich. I have a background as a family physician. I’m a palliative care physician and have been in this role as the executive director for the B.C. Centre for Palliative Care for about 18 months. My goal this morning is just to basically give us a bit of an overview regarding some of the current context, which I’m sure you’re hearing a lot about from everyone who’s presenting.

The role for an integrated approach around palliative care — I think I’ll talk a little bit more about what that means. What’s been happening is there has been quite a lot of alignment. Obviously, there was an end-of-life action plan released. Our centre was funded at the same time, and we’ve been working over the last 18 months to kind of bring alignment. So some of the activities that are happening and, hopefully, just to update you and then to allow room for some questions in terms of what’s going forward.

The grey tsunami I’m sure you’ve heard about. The implications for palliative care and end-of-life care are these. One is that as our population ages, we have more co-morbidity. We have more issues, more things wrong with us, and from a palliative care perspective, that translates into symptom burden.

When you’re looking from a disease management perspective, it’s obvious sometimes those things are not what’s looked at with a physician. They’re looking at your creatinine levels and your this level and your that level. But they may or may not ask: “How are you doing? What’s happening for you? How’s your wife? Is she coping? You have that son and that problem and this and that. How is that all fitting together in terms of the burden that you’re bearing, the suffering that you’re experiencing in these relationships and the shifting identities that are part of the end-of-life-care journey?”

The other thing that’s changing by 2030 is that right now there are about ten caregivers for every person who’s sick. By 2030, there will only be about four informal caregivers by the time we get there. For most of us, we have less children than our parents. There are less people available to care for us and, by extension, more demand on the health care system.

The other thing that’s the implication for us is that as you have more and more chronic illnesses and as medicine has more and more advances and can keep you alive longer, the way that we die is changing. You won’t have this distinct phase where now you’re palliative, and off you go to those people over there.

It’ll be something that will be kind of a bit of a surprise, because you’ll have been fine. The last three admissions to acute care, they were able to pull a rabbit out of the hat, but this time things just go downhill, and no one’s prepared. No one has talked about it. No one has prepared you. Your family’s not prepared, and it’s a surprise, although looking back, you could have predicted it by looking at the trajectory in a different way.

The other thing that’s different and, certainly, for palliative care, is a challenge: for those who die over age 65, a third of those people will have dementia. So two-thirds, no dementia. But in a third of cases, by the time they get to their end of life, they’re no longer able to contribute effectively to decision-making.

The other thing that’s changing in our societal context is the debate about euthanasia, physician-assisted suicide. What are appropriate options within our society? Certainly, again and again that raises this discussion around: “Well, the right response is to increase palliative care, access to palliative care, the range of services around palliative care.” Again, that focus on access and palliative care.

The other thing that hasn’t changed is that we still have varying ideas, depending on our cultural background, of when it’s appropriate to talk about these things. There’s a bit of a stigma in talking about end-of-life care. We all kind of know what’s happening, but the discussions may not have happened. The planning may not have happened.

One of the challenges for an organization like ourselves is really this idea that we’re positioned as an NGO, not within the health care sector but kind of arm’s length. So potentially we can have a different way of engaging the public in this conversation and stimulating this conversation at different levels.

Just to show that, out of all the people who die, most of us would like to just fall asleep one day and not wake up. Three percent of us will do that, but the other 97 percent will have some kind of an illness that then progresses.

Certainly, about 90 percent of those who die could benefit at some point from a palliative care approach — not services, necessarily, but someone who takes a bit of a broader perspective around you, your family, how you’re doing as well as how you’re navigating the health care system, if you understand what your options are, etc.

Palliative care, just to put up the visual, is this sense of walking the line. It can be introduced as early as the diagnosis of illness, and certainly for people with dementia, the planning needs to be done early. That’s when you have the ability to participate.

Some people are that kind of people. I work at the Cancer Agency, in the pain and symptom clinic. Some people come in, and their funeral is planned close to their fifth visit. That’s just who they are. They’re planners. There
[ Page 294 ]
are other people who push it out to the very end and don’t want to talk about it, and everything in-between.

It’s that sense of sometimes you’re more on the disease modifying part of this curve, and sometimes you’re more on the palliative approach. You kind of walk the line with patients. It’s not one or the other but both.

Palliative care now is undergoing a bit of a shift. Where it used to be that palliative care and end-of-life care were synonymous, palliative care now is parking itself more upstream, more of this integration focused on pain and other symptoms. End-of-life care is those last weeks and maybe months of life. Often, some different resources attach to that.

Obviously, that’s one of the challenges at the level that we’re talking today. How do you introduce the right amount of resources at the right time for which kind of people? There are challenges in our system. So from time of diagnosis and based on need. It’s not just, “How long are you going to live?” and then: “Let’s work backwards to how long you could and should have services for.”

The other phrase that we’re using to help people understand palliative care is “wraparound services.” It’s looking at the whole person — the unit of care being the patient and the family — and saying: “What’s missing? How’s your family doctor doing? Are you getting home care services? What other things are needed?” Just kind of providing a bit of a wraparound from what’s happening in the other sectors.

There’s an emphasis on collaboration and integration. The challenge for us is to do that for all diagnoses. We’re pretty good at cancer. We’re not so good at congestive heart failure. We’re not good at all on dementia. Those sorts of things — needing to partner with different people, needing to do that in all settings of care. The conversation that we’re just beginning to have internationally and within Canada is within compassionate communities.

We’ve medicalized dying. I don’t know how many of you have read Being Mortal. It’s an amazing book, if you haven’t read it, and it talks about this challenge, that we’ve medicalized it. Because you’re not safe in your home, we move you to a long-term-care facility. Is that quality of life? Has that been considered? Maybe, maybe not — depends on the long-term-care facility.

It’s the sense that as communities we can mobilize differently to support our neighbours and our family members. There’s lots that we can do to kind of flag and pay attention to the psychosocial events. The Institute of Medicine, in the U.S., did a study, and they estimated that up to 40 percent of the issues at end of life are psychosocial.

It’s this renegotiation. The woman who’s always done all the caregiving in the family, and now suddenly she’s the one who’s sick. The family is scrambling to make it work and needs some support to figure it out. All of that can be mobilized in a different way within a compassionate community framework.

The end-of-life action plan released in 2013 talked about a population health and systems-level approach and began with an analysis of what is happening with the population at end of life and a commitment to redesign health services to meet the needs of the population. So that’s the right mix between primary care and secondary care. Secondary care kind of has both that element of shared care, where you may need a bit of support at different points in time along the trajectory, but primarily, one or the other is managing the care consultation that’s available where you are and then tertiary or specialized palliative care services. That would be available in all settings, not just in hospital or at home but in all settings.

Certainly, one of the challenges — and I’m sure you’re hearing about it — is residential care. Length of stay now is around 14 months, so by definition…. I mean, there’s a small group of people who stay for a long time. Then there are a lot of people who come and go quite quickly through that system and really should be having a palliative approach to care from the time of entry to the system.

How do we actually do that? How do we realign the perspective so that it’s the disease management, the rehabilitation but also this care for the whole person and the conversations that we need to be having?

A commitment to improve access to the palliative care benefits program, which is really that payment the government has for equipment, supplies and medications. There’s a new form that’s just going to be released at the end of this month. They established, as part of releasing this plan, the B.C. Centre for Palliative Care with the idea that it would be less of an academic centre and more of a centre that would promote excellence and innovation.

I’m a change agent. That’s what I do. I kind of figure out how to make things work within a system and try to capacitate a system to move forward in ways that are sustainable. So it’s that kind of energy rather than…. It’s kind of like we know what we need to do, and now we need to figure out how to do it.

The current status. This is kind of what’s happening right now in B.C. About 38 percent of the health care budget is spent on the last year of life — so significant dollars being spent. That’s about 31 natural, expected deaths. Location of death is what I’ve shown there — acute care about 55 percent, hospice and home about 12 percent and residential care about 10 percent. Most people are surprised when they see these numbers. They had just thought more people were dying at home, but they’re not.

Certainly Canada, right now, is among the poorest of the western nations worldwide in terms of our home death rate. The U.S., by comparison, is 29 percent. So you can see that at this point, we’re talking about small improvements, moving from 10 percent to 12 percent to 14 percent, etc. But we’ve got a long way to go, and I’ll talk about some of the strategies that we’re trying to look at towards that.
[ Page 295 ]

In 2012, about 20 percent of those who died had access to specialized, or designated, palliative care. When you’re listening to the debate nationally, that number is often 16 to 30 percent, so we’re right in there. We’re certainly not at the top end. Thirty percent had access to primary care services. Often those are the residential care clients who are being looked at, often quite appropriately, by a family physician but sometimes may have benefited from a bit of an extra level of support. And 49 percent had no palliative care. Those are the people that often are costing us a lot of money because they’re in ICU, they’re going in and out of hospital, and they’re living in residential care.

In 2013-14…. They looked at these two years. In that year, about 60 percent were being recognized as palliative. So an increasing focus on this population — about 58 percent of them on the palliative care benefits program, about 55 percent in home care.

I just want to point out what I’ve put in the brackets. Vancouver Coastal drilled down a little bit into their end-of-life population. They looked at the last six months of life. What they found is if you were attached to home care, you spent an average of 20 days in acute care. If you were not attached to home care, you spent an average of 100 days. The last six months of life — total life span about 180 days. So over half of your time was spent in acute care. This is a problem, and this is what we’re trying to look at.

The strategic priorities. You probably know them well: patient-centred care; coping with end of life; part of the continuum of a quality framework; and then integration, primary community care integration and also end-of-life care with specialist programs — renal, cardiac, COPD, critical care, etc.

Support for advanced-care planning. The way we’ve talked about this in some ways is that we need conversations. If you have the right kind of conversation, which is the kind of conversation that lets people — patients, families — know what I know…. “I don’t know. This isn’t going well. I’m kind of worried. I don’t have a crystal ball to say when or how, but I’m kind of worried that you’ve had two or three admissions in the last few months and that things aren’t going well. We need to consider….”

One of our phrases is that you can hope for the best, but you need to plan for the worst, just so that I have some idea, as a physician, what we’re dealing with. And if that crisis comes, I can provide the care that you want because we’ve had a conversation about it, whereas if we’ve never talked about it, your family member may not know. The stats show that they’re right about half the time if you’ve not had a conversation, which is better than what I’ll show you in a minute around advanced-care planning. But this idea that….

If you have these conversations, people do often prefer less care than they’re getting. That’s true for about 88 to 92 percent of patients. There’s a small group of people, 8 to 12 percent, who will always want everything. They’re there, and we know a lot about them. But they’re not the majority, and they’re not close to the majority. So we need to be looking at that.

Enhanced resources for public health care providers. One of the challenges in looking at advanced-care planning is you need a populace — citizens that understand what their options are, that understand how to take hold of that and make the plans that are appropriate. But you also need health care providers that know what to do with those plans and how to implement them. We need to work on both sides of this equation.

It was a mandate, as well, with the ministry to double hospice spaces — the minister has made a commitment to do that by 2020 — and to promote enhanced partnership with the hospice society.

The way that’s been framed is that it’s not just hospice beds because, when we actually did our analysis of what’s in place at the current time, there are about 375 beds in this province at this time. That’s between hospices and tertiary palliative care units.

We need beds that are around the whole range of the population — people who have no caregivers and need to be cared for somewhere; people who have some care, some symptom-management needs, and need a doctor visiting daily but don’t need to be in acute care, could be in a hospice bed; and then people who are quite complex and need the full services of a designated and a dedicated palliative care team.

When we’ve been developing…. There was some money given, and it’s not been announced, so we’re working towards how we allocate this money. With community hospice beds, what we’re finding is that when you’re looking at rural and remote communities, there are specific challenges.

It’s very easy in Fraser Health and Vancouver Coastal to build a hospice, because you’ve got the population and you’ve got the efficiencies that support that hospice. When you’re in a smaller community, often your resources are in your acute care site. That’s where the services are.

When we asked the health authorities to plan around this hospice-spaces initiative, most of what we received from the rural-remote health authorities was: “Why don’t we put a designated bed into our acute care site? That’s where our 24-7 services are.” We retrofit that for a palliative population. There’s a lift in the ceiling, so they can get to the bathroom. There’s a place for family to sleep. There are staff that are trained and know what to do if there is complicated pain and symptom management. So we’re calling these….

There are some new beds being asked for, but throughout the smaller communities, we’re calling them more like closer-to-home beds, because Nakusp wants a bed and Fernie wants a bed and all these smaller communities want a bed that they can support more fully with wraparound services. But how do we do that?

There’s not enough population to support building a hospice and having more than one bed. We also have
[ Page 296 ]
stats that a lot of these beds aren’t being utilized, so the health authorities are reluctant to build more beds that are sitting empty, either because of lack of operating funds or just not the demand.

That’s sort of how we’re framing it. We’re working on this hospice-at-home piece and with the number of things we’re playing with that are just very preliminary. Over the next year, we’re going to be working with iPANEL — I think they presented to you in April — around developing some policy briefs in this area.

Again, with the data from Coastal and other places, we can show that if you have X available in community, you save acute care bed-days. We don’t know yet what that X is, because we’re starting from where we’re starting.

We know we need home care nursing — more of that. We know we need more home support. We know that in larger centres we may need some shift-care nursing because at the end it may get complicated and a home support worker who can’t give medications. That may not be enough. We know those sorts of elements. The equipment, supplies and medications are obviously a key part of it.

Potentially, over time, there may be a palliative care benefit that applies to that larger population, and then there may be a hospice kind of a benefit where, whether you’re in a hospice bed or a hospice at home, you start to have a certain level of service that’s more at the secondary level. We’re just trying to decide that, and you’ll hear more from us over the next year.

The other thing we’re trying to be very intentional around is that the hospice societies have been very focused on beds. With the announcements now coming that some may get, some may not get the beds they’re hoping for, we are, however, recognizing that 40 percent of these issues are psychosocial practical sorts of issues, the kinds of things hospice societies are good at dealing with. They have volunteers. They sometimes have counsellors and trained staff who can deal with those issues. How do we build more effective partnerships with hospice societies at local levels?

We’re talking about offering seed grants and then some provincial initiatives to spread really good…. Comox Valley, for instance, has a really good advanced-care planning workshop — phase 1, phase 2 — that’s been quite successful. We might then host a training event for other hospices that come and learn how to do this in their community, and then we give them a bit of money to implement out there.

Some of these different ways to create profile, to create partnership, to create opportunities for innovation at a local level — that’s kind of what we’re looking at for this funding. That will be managed through the B.C. centre.

Our vision, really, is excellence in compassionate care and supports for those living with advanced illness, and our mission is to enable public participation in innovation in the development of quality patient- and family-centred outcomes for all British Columbians living with and dying from advanced illness. So it’s idea that it’s not just for the dying; it’s those also living with. It includes the patient and the family as the unit of care, but it needs to include this broader perspective around the community, not just the health system. There needs to be a higher level of partnership.

Our strategic priority is framed a little bit differently than the submission: improving access to care and uptake of the palliative approach to care, so person-centred care. Really, right now, with advanced-care planning…. I’ve been part of a research study that we published in JAMA. When we asked patients what they wanted around end-of-life care choices and preferences, we documented that, and then we looked at their chart to see what the orders were. Can you guess what the agreement was between what they told us what they wanted and what the orders were?

So 36 percent of the time there was agreement. That’s shocking. We talk a lot about patient-centred care. Here’s a way that we can actually get there, because we’re going to be having conversations and we’re going to be documenting and we’re going to be ensuring that that documentation transfers across care settings so that we can improve the care that people are receiving.

That’s the thing. The goal of advanced-care planning isn’t to say: “You really don’t want that.” The goal of advanced-care planning at this time is to align more with what patients are telling us they want. But in those conversations also potentially….

A palliative-care approach is much less about, “Well, your creatinine is this, and your this is this, and your this is this, so what do you want me to do?” and to saying: “So tell me who you are. Tell me what’s been important to you. Kind of tell me a little bit about those things. This is what I know about your condition. Given what you’re telling me, these are some of my recommendations, going forward.”

It’s so you’re really entering into this partnership where they understand what you know about their illness and you’re helping them make the decisions that are right for them, with the full information. Often what has been missing is that nobody wants to talk about it and so people really don’t have the information to make the decisions.

Education and a participatory approach is to promote uptake. I think when you heard from iPANEL…. This is what they’ve been drilling down into. This palliative approach to nursing evidence and leadership is that we can’t just espouse a philosophy of care. We’ve been doing that for a long time. What we need to do is to get down to the bedside or to the local level and help people implement that, kind of like the practice support program within primary care where you’re actually coaching people and supporting them as they do uptake.

In Ireland, the hospices foundation there sponsored a project with respiratory clinicians around palliative ap-
[ Page 297 ]
proach to care. They tried education, and then they tried this, and they tried that. They tried a number of things.

The thing that had the most traction was when they, in the early stages, implemented a post-death review. They began to see where they’d missed the opportunities to introduce a different conversation or a different care provider, and the lights began to go on. Now they’re taking that knowledge about, “Yeah, we need to be doing this, and we need to do better,” to saying: “Okay, next time, I’m not going to miss that opportunity.” So different ways of coming at it.

It’s that almost like mini-PDSA cycles, where you’re planning, doing and studying, but at a very small level, to see where there’s traction. Once you’ve identified traction in a complex, adaptive system, then you move it into the best practice. So it’s enough support for innovation to figure out what works and then spreading that, as appropriate, into other settings; partnership, obviously, with all these other people doing really great things in our province; and then creating capacity around the hospice spaces.

Mobilizing public participation. Our goal is to create a partnership council which has a lot more membership of community agencies and patients and families, as well as health care providers, to really say, “Where do we take this, going forward?” and then positioning the centre as a partner in this transformation.

Fraser Health is an example of a population-health approach. It’s where I come from. So 10,000 deaths a year. About 4,500 were referred to the palliative care program, but 70 percent of those never saw a specialist. They were managed solely by their family physician. Consultation teams everywhere and then beds that are dedicated and proportional to the population.

We engaged very intentionally with all the other programs to say: “How are you going to improve the care for patients in critical care, cardiac patients, etc.?” We did some regional things around advanced-care planning, nursing support lines and other things that make sense to do at a more regional level. A lot of opportunity to improve, based on what your opportunities are in your health authority and in your local community. The outcomes are really advanced-care planning.

Currently, there’s about 14 percent of the public who have a plan. There’s lots of room for improvement there. The research is shifting — that congruence between what patients tell us they want and what’s documented — from 36 percent to, hopefully, much higher than that.

Then with advanced-care planning, as I’ve said, about 92 percent of people choose less aggressive options and experience increased quality of life, increased use of hospice, and there’s better long-term outcomes for family members. There’s less PTSD — post-traumatic stress. There’s less depression, less anxiety. There’s this knowledge: “We did what Mom wanted, and we did the best we could to align choices with that.”

For access to palliative care: greater satisfaction with care, better quality of care, decreased emergency room visits, decreased ICU use, decreased health care costs and often death in the location of choice.

Again, the B.C. Centre for Palliative Care. Excellence through engagement and partnership. Focus on conversations, not just with our patients and families but across the health system and across funders and care providers and everyone in our system to say: “How can we improve this as a community? How can we create the capacity for this type of care wherever you are, and how do we promote that sense of caring and compassion that’s so important when you’re facing the end of life?”

J. Darcy (Deputy Chair): Thank you for a very thorough presentation. There’s a lot in there. I wanted to zero in on one piece in particular. You’ve talked about the role of physicians, and you’ve talked about psychosocial support — well, all the various pieces.

One of the things that I think we heard in an earlier presentation — I’ve certainly heard from people who work in residential care and in home care, whether home nursing or home support — is that they think an important part of a palliative care approach, and improving and expanding it, is also training of everyone who works with people who are nearing the end of life.

In residential care, if people are there for 14 or 16 months — they may not be palliative yet, but they’re certainly…. It’s end of life. I wonder if you could speak to that, because there are a lot of people who work with seniors every single day, people who’re at end of life, who I think are crying out for some training to do their jobs better.

D. Barwich: We cohosted with Victoria Hospice a full day last November on the residential care. There are a number of interesting projects going forward now around residential care. What we heard on the day in November was from a woman called Mary Lou Kelley, who led quite a large participatory action research program in Ontario around what it would take to really implement a palliative approach to care in residential care facilities. Many of her recommendations led to uptake at a provincial level.

Really, it is this shift in thinking that palliative isn’t just those people now who are in the last days but that it’s everyone, and this ability to really look at whole people. Kath Murray is a nurse educator who’s done a lot of work with this population — educating care providers, care aides, personal support workers, that kind of person. A lot of it is empowering them to talk about what they see every day as they provide care for someone, that this person isn’t doing well, that they’re not stable anymore, that they’re on this different trajectory.
[ Page 298 ]

I think always the issue is resources. Like, is it going to take more resources? But it’s just a mindset shift sometimes, and then having access to the specialized resources. In Fraser, for instance, what we did with residential care is every single person now in residential care has a MOST form, which is a form that captures the level of care. So basically, there’s always a conversation within the first six weeks of admission around: what are your goals of care, and how do we translate those into a medical order set?

They also developed, at the end of life, an actively dying protocol so that if someone is now in the final days, in our estimation…. Sometimes people have a bad few days and then improve again. How do we improve the care in a standardized way so that nurses can say to a physician: “We’d like to implement this protocol”?

You’re trying to standardize some of these elements of care. “Can we implement this?” Then it includes things like you can put a Foley catheter in. You can do certain things without needing to call the physician for orders.

A lot of it, as well, is when that crisis hits. With MOST…. For instance, someone has had a stroke. They’re not doing very well. You have a conversation, and you decide not to put a tube feed in.

What we’re promoting with MOST, because now we can have it on line, is if you say, “No tube feeds,” it should prompt you for your order set around eating at risk, because that person is eating at risk. One time or another, they’re going to aspirate. They’re going to have a crisis. If you can have been proactive about that and you have a care plan in place, then they can implement that care plan. But what often happens is there’s been no planning for crisis, so when the crisis happens, off they go to acute care for an assessment and a plan and often never make it back.

For instance, having someone to call. I think with the residential initiatives that are happening under integrated primary community care, there will be someone to call. In the North Shore, they did a project where for six months these patients were registered as palliative. When a crisis happened, they could phone a palliative care physician who could problem-solve with the staff. And for six months, there were no admissions to acute care because, in that moment, you provided support to nursing staff to get them through.

Sometimes what we used to do in Coastal when I worked in the Vancouver home hospice, was that we had a bit of nursing we could put in if there really was an acute kind of situation that needed nursing support.

It’s not just one thing. It’s a number of different things. But I think it gives you a sense that you’re now building a system that’s centred around that resident.

M. Stilwell: Thank you. Very interesting. Two quick questions not really related.

This week, the Canadian Cancer Society announced that they were stopping their volunteer driving program, which I found very…. You know, that’s kind of just been there forever. Is it indicative, given that a lot of the presentations we’ve had talk about volunteers? So my question is: is that realistic? Was the stopping of the volunteer driving program a canary in the coal mine? What’s your experience? Do you have any thoughts about that?

D. Barwich: I can’t comment. I’m meeting with them later this week, as it happens. But it’s certainly a key program. That’s where my clinical work is — at the Cancer Agency. For lots of people who are isolated as seniors, it’s a really key support.

M. Stilwell: I just wonder if it’s indicative of something around volunteering.

The second thing is I’ve had several meetings in the past six months with the seniors service providers in my constituency, including the day centres, and they are talking about seeing the need for intensive day programs to keep people out of hospital. There are going to be patients who…. Four hours of something a day isn’t going to be enough, but it’s really going to be, like, kind of 12 hours day care. Do you see that fitting in?

D. Barwich: I started in palliative care in South Africa in a freestanding hospice which had that. We had a wonderful day program. The patient could come and see the doctor, get his hair cut, go to church, spend a bit of money — they had that special tub — get a bath, get all cleaned up. The wife, meanwhile, is chatting with all her friends that she’s met over the last how many months, and there’s a support system.

It was quite different, more of the U.K. model of hospice, where you are actually this more active member of community and there’s this flow in of people earlier. I really am a strong supporter of that.

D. Bing: Thank you for your presentation. I just had a question about the location of deaths. You were saying that Canada has one of the poorest rates, particularly when we consider the United States, where it’s 29 and we’re 12. Is there some way that we can get this number up, that we can get…? What are we doing that keeps us at such a low number?

D. Barwich: I think this hospice at home is the answer because I think, again, that the issue often is: what do you do in crisis? Right now, our population is still oriented that when you’re in crisis, you go to emergency. You go to hospital, because that’s where the specialized services are.

It often takes, for our palliative patients who are connected in, a visit or two to realize: “They didn’t have a clue about my pain. I should have just called you guys in the first place.” There’s problem-solving on the phone with the after-hours. There’s a nurse, and then there’s a CNS
[ Page 299 ]
backup, and there’s physician backup. So you can escalate the issue, depending on what the need is.

I’m on call for Fraser Health. I work at the tertiary unit. I’m on call for the whole area of Fraser north for any nursing, any client in that area. You can problem-solve a lot of things at home. There are 24-hour pharmacies. You can get meds out. You can do things sublingually to tide people over. There’s a lot you can do.

But it’s not often what people are thinking of until they’ve gone to emerg a time or two and realized: “Okay, there are really no answers here. I would have been much…. I got this phone call, and all these things happened.” So it’s kind of realigning the expectations. But you have to actually be there then in the crisis. That can’t be when they’re calling and calling and getting nowhere.

I think in the States they have this hospice benefit at home, and then there are nurses that really come in. I heard you talking about managed-care systems. They can actually see someone’s trajectory. If they’re starting to go in and out of hospital or acute care, they put in very proactive case management to kind of come alongside and start to put those community services in place so that that person is supported in place, rather than — which we still see a lot — this ping-ponging in and out of acute care, where really they’re not well served most of the time.

D. Barwich: What we did in Fraser is we had a prototype where we developed…. Rather than the 40 nurses in Tri-Cities seeing palliatives, we took a smaller cohort. We had eight nurses that were just dedicated to the palliative. We moved our death-at-home rate by 5 percent in six months.

Again, you’re not seeing every nurse, and one nurse might just say: “Oh, just go to emerg.” You are really focusing on getting these people…. If they want to stay at home, you would do an assessment.

We’d have to say to some people: “You know, you have no caregivers, and you have a lot of shortness of breath. You’re probably someone who needs to be in a hospital or in a place to have the support you need. But you’ve got five daughters, and they’re all keen and anxious, and they’re willing.” We think this really possible and everything in between.

We would focus on the people for whom it was possible and then put in the extra resources — overnight home support and things like that — to just keep people managing until the end, because that’s a goal for many people, and they’d like to do it. Many families would like to do it. So how do we help them do it, make it possible?

L. Larson (Chair): Thank you. Our next presenter will be coming in on the phone, so we don’t have the ability to shuffle the time on that. I’ll have to ask anyone else on the committee who had questions to direct them to Dr. Barwich on their own time. I’m sure she’d be more than happy to answer any further questions.

I want to thank you very much for being here today to make this presentation. We really appreciate it.

L. Larson (Chair): Good. Thank you. I’d ask you just to introduce yourself and talk through your presentation, and then we will have time to ask you questions.

D. Davidson: Okay. Thank you very much for the opportunity to present further views on behalf of our society. Just by way of introduction, I’m the president of the Cranbrook Kimberley Hospice Society. We provide services in both the Kimberley and Cranbrook local health areas, which are partially rural and partially….

We also, as a result of our initial submissions and discussions with our sister organizations, would like to point out that we tend to work on a regional basis in the East Kootenays. We’re the last frontier in some respects. We’re so far east of the centre of the province that we’re in a separate time zone. We tend to work together and cooperate quite well.

There are five societies within our general region providing services to 50 communities which vary in size from about 20,000 down to maybe 150, if you count some of the dogs and cats. We really feel that we represent the issues around end-of-life care as they come forward in rural and semi-rural areas.

In our previous submission, which I understand you have a copy of and no doubt have read, we tried to make the following points. The first being that end-of-life care is part of a continuum of care and that as such, it should be planned and supported as just part of the normal administration of health care in the province.

We also made the point that good end-of-life care involves medical, psychosocial and spiritual support of both the client and their family. It is our view that none of these three elements — the medical, psychosocial or the spiritual — is more or less important. They are all equal.

We also support the concept that care is best delivered by interdisciplinary teams. From that perspective,
[ Page 300 ]
we look for opportunities to work with our colleagues in the health care system and, in fact, with other non-profits that work in similar areas to try and improve the quality of care by adding to it rather than trying to go off on our own and doing it all on our own.

Because of that, we do feel that hospice societies should be included in the planning and delivery of end-of-life care and that the societies should be supported to enable them to improve their capacity to provide services.

Finally, we made the point that we do feel that the effort should be made to address inequities in support of both hospice societies and in the quality and availability of end-of-life services within all parts of the various health authorities.

I’m sure you can appreciate, in a health authority the size of the Interior Health Authority, with the wide variety of different contexts, the difficulty of providing services. We don’t feel that we should have exactly equivalent services everywhere. However, we feel that the rural areas should not be left out and starved, based on the requirements of the large urban centres that occur within the health authority.

We view hospice care as a specific area of concern and focus for the system as a whole. Understandably, we don’t dispute that the primary focus and effort of health care is the prevention and curing of disease. That is a noble and an admirable goal. Quite frankly, we think that, with all its failings, our system is really not that bad. Those who work in the hospice field acknowledge, though, that despite the best efforts of all the players in the health care system, we are not immortal.

Having accepted that fact, it is our view that at some point during care, during the life of an individual, the focus of care should shift from being one of prolonging life to supporting the individual in making the final transition from life to death.

This does not mean withholding treatment. It broadly means refocusing the treatment on the quality of life rather than the quantity of life, although we do note that in some cases — and this is certainly our experience — our services do seem to actually prolong the life of our clients, as well as improving the quality of their life.

We also have a broad view of the context in which our clients exist and try to support those surrounding them at this time of transition. That would be family, sometimes friends. Sometimes we have situations where people have long-standing issues that they wish to enlist our help in dealing with.

Our method of support is a very simple one. We recruit and train volunteers and give them about 35 hours of training to teach them, essentially, how to listen empathetically without judgment to the real voices of our clients to create a safe space where the clients and their families can talk about and make the necessary decisions and adjustments on their journey. Our volunteers can also act as guides, providing information and direction through the sometimes amazingly complicated systems and processes that our clients are utilizing as they move forward on their journey.

Most importantly, our volunteers are there for our clients and their families with the most precious gift of all, and that is time. They are focused on the client and listening to the client, so they have time to do that: time to listen, time to hold a hand, time to give a hospice hug, time to just care and be there.

This is a difference in the philosophy of care. It’s what we think separates the curative part of care — which, after all, is the primary focus of our health care system — and hospice care. In our view, this justifies the consideration of the end-of-life services as a distinct area of concern and need.

Now, we also, after death, support our survivors as they adjust to their new reality. We maintain regular contact. We have a structured bereavement program, and we have a rainbows program for children. All of these are designed to help people work their way through this transition. We find that people, a month or so after a bereavement…. For the first month, they’re kind of in a fog because there are things to do and adjustments to be made and actual, practical stuff to do. Then they’re kind of left hanging. That’s when we are there for them.

We want to emphasize that it’s not only a question here of doing what’s right, although that’s our primary focus, obviously. It’s just to supply support to our clients.

But there’s a side benefit to that, in that it’s quite well established that people who are under stress and aren’t dealing well with their stress tend to get sick. With our support, we’re quite confident that we help people to make these adjustments in a healthy way and as quickly as they possibly can. That, in our view, is beneficial to the health care system in that it just leads to better mental health and better physical health for the survivors.

We also encourage discussion and thought about death and dying within the general public. We promote the concept of advanced-care planning through the My Voice program. The overall impact of our bereavement-related programs is to increase the ability of our communities to deal with death and dying.

Now, this kind of resilience, we think, is important for the individual clients that we have. But more than that, it’s something that is going to become increasingly important as our population ages.

We also work with other health care workers to introduce to them the nature of hospice care and to support efforts to improve the quality of end-of-life services within facilities and other caregiving settings. We do find…. I’ll point out at this stage that in support of our initial submission, our sister organization, the Hospice Society of the Columbia Valley, sent a letter in, which I’ve included with my submission. They mention in there the importance of education of the individuals in the health care
[ Page 301 ]
system in what hospice care is all about.

That is certainly something that we have found as well — that this is an important aspect of our work. It’s in no way a slight on the quality or dedication of the wonderful people who work in health care. But it is a different way of looking at things, and it’s not something that everybody has been exposed to in their training and so on.

We work with our colleagues to try and introduce the concept of hospice care and help them to make the transition, as they serve their patients, so that they can help them make the transition that they feel is necessary. This is an area in which we are finding more support. We’re actually very positive about this aspect of our work.

Now, overall we feel that our work certainly supports the health care system as a whole. We are very pleased that the Interior Health Authority has recognized the importance of the hospice societies within their boundaries and has included them — and us, as well — in their planning process and has, in fact, recently formed a working group of hospice societies. We look forward to working with that group to improve the quality of end-of-life services throughout the Interior Health Authority and to make our contribution as best we can.

The other thing that we would like to say at this point is that since we are in a different kind of area from other hospice societies, we feel we can make a contribution to developing appropriate strategies to provide quality end-of-life services in a rural setting. It won’t look exactly the same as it will in, say, Kelowna or Kamloops, because we’re just a very different context. But that’s not the same thing as saying that we should just be forgotten about. I think we have to develop and look at developing different ways of delivering the services that are appropriate and meet the needs of our population.

I must say we are cognizant of the fact that there are limited dollars. We certainly do have to be aware that anything we do try to develop is sustainable in the long run, as well as being appropriate in terms of service delivery.

We note the priority being placed by the Ministry of Health on the planning of end-of-life services and creating more hospice spaces within the province. We wouldn’t disagree with characterizing it as creating hospice spaces.

In our experience, the kinds of spaces that are created are sometimes very appropriate. It would be lovely if we could have a wonderful specific hospice facility within our catchment area. We don’t feel that that’s practical.

We do have some palliative care beds which are, in our view, probably not located in the appropriate spot. It’s very difficult to have the kind of care that people at the end of life need delivered in an acute care setting, which is where some of these beds are. It’s just a difficult thing to balance the priorities of people who are being treated actively, and with an eye towards cure and discharge, with people who are not going to be discharged. They’re there for their last few weeks.

We would look forward to working with both the ministry and the health authority to develop alternate ways of delivering care and alternate support for not only the clients but also for the caregivers, in terms of their knowledge and their skills, and also locations where it is appropriate to give care and supporting that — whether that’s at home or in a facility.

Now, we are still a volunteer-based organization. Virtually all of our direct, hands-on services are delivered by volunteers. I cannot say enough about the quality and dedication of our volunteers. It takes a very special kind of person to do the kind of work that they do. They spend a great deal of their time and their energy to deliver extremely good services. It’s pretty hard to beat that, in terms of efficiency. We are a bargain at twice the price, to put it mildly.

In summary, we feel that our society and others like it are a resource that should be nurtured and utilized to improve end-of-life services. We are resourceful and creative in developing and providing services that are relevant and responsive to the needs of our clients while being cost-effective and supportive of the health care system.

Most importantly, we are human beings reaching out to fellow human beings at a time of great stress. We hope we provide comfort to those we touch.

That’s pretty much all I have to say. If there are any questions, I would be very happy to try and answer them.

L. Larson (Chair): Thank you, Don. I’m going to just apologize for not identifying myself when I first spoke to you. I’m Linda Larson, and I’m the Chair of this committee. I’m also the member for Boundary-Similkameen, in Interior Health, which is a very rural, remote area as well.

I have just one question for you. Your volunteers appear, once they’re assigned to somebody who has been identified in the end of life or the hospice, to sort of stick with them right through the system, according to your presentation — then, of course, again afterwards, support for the family.

I’m wondering if you get any push-back from the professionals, having a volunteer involved that closely with somebody who is going through this end-of-life process.

D. Davidson: I wouldn’t say, specifically, push-back. The one area of concern — and it’s something that we’re working on, and we’re certainly seeing some improvement in — is the time that we get involved.

I guess this goes back to the issue of the change from treatment for cure to treatment for quality of life. If we can get involved quite early on — say, for example, at the time of diagnosis of a disease that we know is, in the
[ Page 302 ]
long run, going to be fatal — then our volunteers have time to develop a warm and supportive relationship with the client — and their family, for that matter — which encourages them to feel safe and to open up and to deal with the issues that they have to deal with.

We do find that sometimes we get brought in quite late in the process, in the last week or two of the person’s life. Certainly, we provide services. We provide a vigil service in the last 72 hours so that the person will have some comfort and some care, some human contact during the last few days of their life. But if we can get involved earlier, it’s that much better. We do find sometimes, it seems like, some reluctance to refer to us. I think that’s because caregivers want to do their job. They want to make them better. I think it’s probably hard for them to say: “Well, we’ve done as much as we can.” I mean, doctors and nurses are human beings too. They don’t like to admit defeat. I think that’s part of the problem.

In terms of push-back because we’re volunteers, no, I can’t honestly say that I feel we’ve had that. I think when we explain to professionals how much training our volunteers give and when they see the results of it, that seems to take care of any issues that they may have. And we don’t pretend to provide hands-on care. We don’t pretend that we’re going to be giving injections or medications or anything like that. That’s not our job. That’s the professionals’ job.

J. Darcy (Deputy Chair): Thank you so much for your presentation and for what you do every day — and your volunteers.

I’m Judy Darcy. I’m the Deputy Chair of the committee and the MLA for New Westminster.

I want to pick up, really, on a similar issue that the Chair, Linda, spoke to — not so much the barriers but the relationship. I wonder if you could talk some about the training. You’ve spoken about, and your document speaks about it, the training that’s provided to volunteers. This, obviously, isn’t something that just anybody can do. This is a very, very difficult time in the person’s life, the family’s lives. So what kind of training do you provide for your volunteers? And is there any training or orientation for the health professionals or any sort of guidelines about what their role is, what the role of volunteers is?

D. Davidson: Our training program follows the training outline developed by the British Columbia Hospice and Palliative Care Association. It’s modular. It’s a total of, I believe, 33 hours.

The other thing is that before you get into the training, there is an intake process. You fill in an application form. You’re interviewed by our coordinator and an experienced trainer, who has worked as a volunteer, to ensure that the person is appropriate. For example, we do sometimes find that some people who’ve received our services think: “This is wonderful. I’d like to do this.” We tend to say, “Well, wait for a year or so until you’ve had a chance to deal with your own issues,” rather than putting somebody out of the frying pan and into the fire, so to speak.

In terms of the training itself, it’s modularized. We start off with a discussion of what the learning outcomes are and then the guiding principles around palliative care, hospice palliative care and the history of it, the terminology and then the general cycle of care. We then move into an explanation of medical care and what kind of medical care they would likely be seeing, like what their clients would be undergoing. Then we look at personal and practical care for the individual, and then we talk about psychosocial and spiritual care.

I might add that around the issue of psychosocial and spiritual care, we are non-sectarian. We don’t espouse any particular religious belief or even philosophical belief. What we do acknowledge and acknowledge with our clients is the importance of the psychospiritual aspects of their life. You’re not just a body that’s ill. You’re a human being, and as such, you have feelings, you have emotions, you have fears, and you have beliefs. We respect those and train our volunteers very carefully not to impose their own personal views on our clients.

We then move into the question of loss, grief and bereavement care. We spend a lot of time on communication and do role plays. Again, we utilize the services of experienced volunteers to help introduce the new volunteers to the kinds of questions that will be put to them and practise how to answer, how not to impose your own views on people, how to encourage discussion and opening up without trying to direct the conversation.

Finally, we have a module on self-care. Our volunteers become very close to clients. When there’s a death, it’s a loss for them as well. So they have to learn how to deal with that. Most of our volunteers are very good at that. We also try to make sure that we don’t give them too much workload. We give them time off between clients and so on and so forth, which makes it a little difficult in terms of the numbers. But we have to make sure that our volunteers are able to take care of themselves so that they can then take care of their clients.

We also have separate training sessions on bereavement. We follow the companioning model that was developed by Dr. Alan Wolfelt. He focuses on how people grieve and the rights of the bereaved person and how to assist people to address their grief and adjust to their new reality.

We feel that we’ve given our volunteers all the tools that they need. It’s a little easier for us in one sense because we don’t have to teach people about drug interactions and how to give morphine and that sort of thing. That’s not our job. Our job, as volunteers, is to really be there and listen. What we find is that very often the client…. That’s what they really need. They just need somebody to hear
[ Page 303 ]
whatever it is they have to say, whether it’s something that has bothered them for their whole life or just a fear or a concern about the outcome for their survivors.

These things are legitimate concerns, they have to be heard, but we don’t try to solve them or fix them. It’s a little too late for that. But we find that people…. When they’re given a chance to just get these things off their chest, it’s amazing the amount of release they get from it.

Along the same lines, the issue of the volunteer work. We’ve heard from a variety of stakeholders, and one of the common themes is that over the next, say, 15 years we’re going to go from 10-to-1 caregivers today to 4-to-1. So there’s a dramatic decline coming.

I’m wondering if you’re seeing that with volunteers. Is that an issue for you? Do you have a certain level of volunteer service that you require, or is that not an issue?

D. Davidson: Well, I think it’s an issue for every non-profit organization, frankly.

We state that we have managed to keep ahead of the curve, as it were, and we’ve managed to recruit sufficient volunteers. Although we’re always recruiting, we’re always a little nervous that the demand may outrun the supply.

I really don’t have an answer for you on that. I think that…. A large number of our volunteers are older — retired people — although we do get some younger ones. I think that the plus side, I guess, of the grey tsunami, as people call it, is that there are going to be more people who are retired. Perhaps that will be a bigger pool for us to fish in. The downside is, of course, that the younger people…. There won’t be as many of them relative to the number….

I guess it’s a bridge we’ll have to cross when we come to it. I’m not sure that I have an answer. I’m part of the problem, not part of solution on that one, I’ve got to say. I’m looking at the big seven zero in a very short time, so I guess I’m going to have to leave that one for my successors to resolve.

L. Larson (Chair): Mr. Davidson, thank you so much for the time today to tell us about what you’re doing in your area. I really appreciate it, as I have exactly the same situation in mine. We very much appreciate that you’ve put in a submission.

D. Davidson: Thank you on behalf of not only my own society but the societies in the East Kootenays. We do appreciate that we’re being heard, and we do appreciate the efforts that the ministry is making to resolve this issue. It’s something that has to be addressed, and we’re glad to see that you’re trying to get ahead of it.

L. Larson (Chair): Good afternoon, Dr. Shaw. We will, as we ask questions after your presentation, identify ourselves to you so that you know who you’re talking to. We’re just getting ready to go here.

D. Shaw: All right. I’m here with Tracy MacFadden, who is the executive director for Desert Valley Hospice Society, and my wife, Janet Shaw, who is the president of Desert Valley Hospice Society. I am a retired family doctor and also a director of Desert Valley Hospice Society. I have worked in urban and rural centres during my career.

I really would like to thank the committee for this opportunity to address certain issues that we have regarding palliative, end-of-life care services in Oliver and Osoyoos, as representing rural communities.

First of all, I think we have to acknowledge that, in general, we tend to be a death-denying society. That terminology actually comes from the 2010 Senate of Canada report entitled Raising the Bar: A Roadmap for the Future of Palliative Care in Canada, the hon. Sharon Carstairs. She refers to a tsunami of aging in the next few years. But even more critical is the fact that the rural areas appear to be aging faster than urban centres, so the problem tends to keep being more and more acute for us.

At the present time, end-of-life services tend to be more concentrated in urban centres than in rural centres. In most rural areas, certainly in Interior Health, the end-of-life beds are not dedicated. The dedicated end-of-life-care beds, which can’t be used for any other purposes, only exist in the urban centres.

What is proposed for us are what are called swing beds, or beds that can be used for an alternative purpose. And as we said in our original presentation, this certainly can be problematic. To quote, we said that to be effective, beds “must be dedicated funded palliative care beds as opposed to ‘swing beds,’ which can be converted to other uses and subject to other agendas.”

The beds that have been proposed for us recently in Oliver and Osoyoos also can be used for respite clients. The problem for end-of-life clients is that those beds are generally occupied for longer periods of time by a larger
[ Page 304 ]
pool of patients who can keep using those beds repetitively, thereby blocking access for patients at end of life.

The other issue is that palliative care teams in rural areas are not funded for work after hours or on weekends, and that makes it very difficult for end-of-life clients to die at home and access an appropriate end-of-life-care bed. For example, if a medical crisis for an end-of-life patient occurs at night or on the weekend, often the only recourse is to call the ambulance and have that person seen in the emergency department and admitted to an acute care bed.

The problem with that is that the acute bed is an inappropriate setting for an end-of-life client. The emphasis is on cure in those facilities, and there is certainly a lot more investigation and imaging and expensive things that tend to be proposed in that setting for an end-of-life client who is in a palliative situation.

I’d like to say a word about the group of people with chronic life-limiting illnesses who are not immediately at end of life. I think we need to view these people as being on a continuum for end-of-life care. I’m referring to patients who have significant life-limiting organ disease, like lung disease, heart disease or kidney disease. In many cases, these have a defined medical trajectory, but they all of a sudden appear when there’s a crisis at the end of their life.

Those clients really need a palliative approach to their care long before they come under the umbrella of the B.C. benefits program, which is often instituted hastily when the wheels are falling off, so to speak. They require a palliative approach to their care, and they require some advanced-care planning as part of their care plan.

I think that we at Desert Valley Hospice Society have recognized the value of advanced-care planning, and we are working in that area to provide some community presentations followed by some workshops in this area. We would like to see a registry of some kind for clients with chronic life-limiting illness so that the issues regarding the directives at their end of life can be addressed long before they are imminently dying.

Advanced-care planning, I think, is particularly critical to not just the immediate end-of-life clients but also to those people with chronic life-limiting diseases. I think the family physicians can play a much bigger role than they have in this in the past. They have a registry in most offices of clients with chronic disease management modules. Advanced-care planning, we feel, should be a documented discussion for all of those clients. Advanced-care planning is critical, I think, before admission to residential care and certainly critical before patients end up on the B.C. benefits program at end of life.

I would like to say a word about funding for hospice societies. Funding for rural hospice societies tends to be quite unequal. Some health authorities fund hospice societies, and some don’t. In Interior Health, some are funded and some are not. There’s no equality in that process.

The rural societies are attempting to fill many of the gaps in care, which we don’t have because we’re not big enough to get the services that an urban centre has. As a result, much of our time and energy is spent on fundraising. We feel that maybe a formula could be developed for rural hospice societies that could take into account the fact that funding is essential for us to deliver our programs and to enable us to expand contracts to provide certain services for the health authorities.

That’s about the extent of my presentation today, and I’m happy to take any questions that you have.

I’m going to turn it over to Richard. Would you introduce yourself, please, and then ask your question?

A question comes up for the rural end-of-life care and also the hospice services. Are those aboriginal communities using that facility, your services? Also, are they going now…? We have the Aboriginal Health Authority as well. Do you see any collaboration in programs?

D. Shaw: We certainly have our services available to everyone. We find that some of our ethnic communities, particularly our East Indian community and our aboriginal community, tend to be a little more insular in the way they deal with end-of-life issues.

We have attempted to reach out to the aboriginal community. We’ve certainly included them in our planning. I would have to say, for example, that we don’t have an aboriginal person currently on our board, but it is something that we have thought about and would like to work towards.

R. Lee: Would it be helpful to attempt to recruit some volunteers with an aboriginal background?

D. Shaw: They’re included in all of our education, and we do recruit widely to try to have access to all of those communities. So it’s not something that we have on the sideline. We’re trying to be as inclusive as we can. It’s actually one of our key strategic objectives.

Please don’t feel badly that we’re kind of bereft of questions. What you’ve put on the table is actually what we have been hearing from a lot of other organizations, and I guess we’ve asked a lot of questions of those, as well, along the same lines.

One question that I did pose and that you didn’t raise was: how much influence can the doctors actually have on how the health authority distributes the funding? In other words, doctors as a group…. Certainly, the rural physicians of British Columbia have a fairly strong voice,
[ Page 305 ]
I think. Do they have any ability to put pressure on the health authority to integrate hospice better because they want their patients to end their lives not in a four-bed acute ward?

D. Shaw: I would have to say that family physicians as a group have little or no influence over funding through Interior Health. Those decisions are made much higher up the political tree. So rural family physicians feel frustrated by what’s going on, but unless they’re willing to become more politically active in the association — Doctors of B.C. — and further up, very little seems to be getting done in that regard.

The Divisions of Family Practice has taken some lead in this area. They have modules that they’ve presented, and the doctors have taken those modules, basically, about understanding the medical situation around end-of-life care. But when it comes down to the logistics of how that care is delivered, they’re really left out of that equation.

D. Shaw: Yeah. To give you an example of how difficult it is, we have a small palliative care team with a nurse who works during business hours looking after clients on the B.C. benefits program, usually about a dozen people at a time. These are people who are at home. The family doctor is kept in that loop, and there’s a clinical care meeting every week to discuss how that’s going. I sit on that committee as an observer and a proponent for Desert Valley Hospice Society, but there’s another family physician on that committee as well.

The problem is that the team can’t provide any services after hours and on weekends. When there’s an emergency, an appropriate end-of-life bed is not going to be available. The emphasis on all of the beds in residential care, for example, is that they have to be occupied 100 percent of the time. So with 100 percent occupancy, how is an end-of-life client who runs into a crisis after hours ever going to have access?

Okay, if there are no other questions from the committee, we will let you off the hook, Dr. Shaw. Thank you for sending in the written presentation as well as being available today. You’ve only added to what we’ve already heard. Certainly, we have some interesting recommendations to put forward when we’re through this process.

D. Shaw: Thank you very much. I have to just say in summary that for us, in terms of if I had one message to give you, it would be that end-of-life beds and end-of-life palliative care services 24 hours a day would be our priority.

L. Larson (Chair): Good afternoon. Thank you, Dr. Chappell, for coming today to present to this committee. I’ll let you do your formal introduction and just go right into your presentation. We’ll catch up to Dr. Hollander when we can connect with him on the phone.

N. Chappell: Thank you very much, and thank you for the opportunity to present. Marcus and I have been doing research in this area for well over 30 years, so it’s a topic that’s very close to our hearts.

You’ll know that we’ve already submitted probably too much material to the committee, and I’ve added more to it. I’ve brought you a book, and I put on it that it’s really chapters 6 and 7 you want to pay attention to. The material that we’ve sent is pretty well consolidated in there, so what we would like to do in our 20 minutes is to try to simplify and briefly present an overview.

We start with continuing care and what continuing care is. Classically — you’re probably all aware of this — it’s a vertically and horizontally integrated system of service delivery, with a broad community base for people with functional disabilities and chronic illnesses.

Our focus, you’ll see as we progress, is on individuals, particularly in early stages of disability and chronic illness. Continuing care incorporates a host of services, including assessment and case management, home care, including short-term hospital replacement care; home support; and palliative care. Others are being added, such as supportive housing and assisted living.

Continuing care refers to continuing in two senses of the word: continuing over time and across a variety of types of services. What we will focus on today is integration. We want to focus on integration because we believe it’s critically important but also because, if you look at the literature, people use the term “integration” in a plethora of ways. It doesn’t just mean the same thing to everyone, but everyone’s using the term these day. We’re arguing for an integrated care system, and we’re going to explain that in a bit more detail in a moment.

Integrated care delivery systems, we believe, have a number of benefits. They’re clinically beneficial. They’re seamless for clients — at least, that’s what we want to offer clients. From a policy perspective, policies can be made at broad, systems levels. Economically, they allow
[ Page 306 ]
the substitution of lower-cost services for higher-cost services in many instances. That, in fact, is the crux of our argument, which we’ll elaborate as we go on. We believe that there is an alternative here to provide increased efficiencies — in other words, to provide appropriate care for older adults that is also cost-effective.

Some of you, if not all of you, here today will know that continuing care in Canada lived a more glorious life in the past than it has in the last couple of decades, 25 years in some provinces. By the early ’90s, fully seven provinces had an individual responsible for a provincial continuing-care service delivery system. There used to be a federal-provincial-territorial subcommittee on continuing care.

When continuing care was identified as a system unto itself, it in fact was the third-largest component of public health expenditure after hospitals and primary care. If you took the components that are considered continuing care today and put them together, they would be as well, but we no longer have a unit called continuing care per se.

British Columbia’s continuing-care system, which I’ll say a bit more about in a minute, in fact in the late ’80s and early ’90s was recognized as one of the best in the world, and international observers came to study it.

Since health reform in the 1990s, particularly starting in the mid ’90s and then continuing basically to the present day, integrated systems of continuing care as a separate identifiable entity have been in decline. This has been true irrespective of the political party in office, so it doesn’t seem to be a party issue or a political issue. There are at the current time some efforts to form cross-party committees.

Just a note before we continue that caregivers are an appropriate part of care. Caregivers, informal care, family and friends — primarily families — provide, depending on the study, between 75 and 85 percent of care to older adults, and despite what you may hear in the media, care from informal caregivers is not declining. Family members are not looking to shun their older members.

It is true, however, that their older members are living longer, and they’re living longer with more complex health problems. So the demands and the burdens on family caregivers are increasing, and they’re not always ones that they are able to meet, despite their best efforts.

There is now a large body of European research. The European research is interesting because you’ve got so many countries that have different governmental systems of providing home care. In the north, they provide much more. In the south, they provide much less, and in the middle of Europe, they are somewhere in the middle of providing services.

There are now several studies that have come out of Europe that show that when governments expand community services and home care for older adults, family caregivers do not shirk their responsibilities. They do not stop providing care. Older adults remain longer in the community and outside of institutional care when there is comprehensive community care provided, and informal caregivers often play a key role in enabling that.

There is certainly research in Europe. There’s research — less in Canada, but some fairly recently out of Quebec — showing that the general population expects and wants governments to provide more comprehensive community care. So when we talk about integrated care, please, let’s not forget about caregivers. They’re part of the team.

I want to move on now to talk about cost avoidance through tertiary prevention. There is a supplement which defines primary, secondary and tertiary prevention. What we’re really focusing in on here are individuals who already have some disabilities, some difficulties with functioning because of medical conditions — diseases, chronic conditions — and how we can help delay their decline further or, in the best scenario, prevent it altogether.

There has been a shift away from recognizing that appropriate seniors care requires a mix of both health and what is often known as social care — social care that comes from a medical need. But it doesn’t always mean, particularly when we’re talking about chronic conditions — which, by definition, medicine cannot cure…. What people need assistance with is functioning, and they often don’t require highly skilled medical personnel for that assistance.

With the push that came in with health reform to decrease hospital stays, there was a tremendous increase on short-term post-hospital care. There were increases in home care budgets, but not enough to meet demand. What happened is…. Of course, the post-hospital demand often is critical. It’s short term, so a lot of the home care budget from chronic long-term needs of older adults was shifted to short-term post-acute care.

What we’ve seen is what is often referred to in the literature as a medicalization of care and a policy-inspired cost-escalation spiral, which we believe we are in now. Let me explain that briefly.

Hospitals ask for more money, and governments find that money, often through reduced community care and home care budgets. But as older adults are cut from long-term chronic care, without assistance, they go to emergency rooms more often. They break hips and so on and so forth. Then there is a greater demand on institutional care. Hospitals have increased workloads, they ask for yet more dollars, and the cycle repeats itself.

What, in effect, happens is we’re replacing the high-cost hospital services for the lower-cost community care services. So not always, but often, the community care gets assistance with transfers, assistance with bathing, assistance with shopping, those sorts of things that a non-professional worker can provide, and they cost less. I’ve said that, so I’m going to move on.

I’ll just mention this very briefly. We’re trying to stick to our time here. There was, in the mid ’90s…. Some of you will know this. B.C. made a policy directive that per-
[ Page 307 ]
sonal care clients, those with the lowest level of need who needed some housekeeping assistance, were to be cut unless they also required home medical support. Many of the health units followed the directive, some totally ignored it, and some went somewhere halfway in between.

Marcus, actually, was the lead on this project. He was able to find two health authorities at the time that totally obeyed the directive and two that totally ignored the directive. What he found was that over time, those who were cut from the lowest level of housekeeping services only — they didn’t require anything else — ended up costing the system more in hospital admissions and long-term-care admissions, particularly in years 2 and 3. That was as far as the study went.

What the data do is they support what we call the preventive function of home care or community care. This is just a bit of data that we’ve taken from another study that Marcus and I were involved in. We compared clients in Victoria and Winnipeg who were at the same level of need — those who were in the community on home care and those who were in long-term-care institutions. Irrespective of the level of need, it was cheaper to keep people in the community in home care. The differences in cost were…. Home care costs anywhere from 40 percent to 70 percent of the cost of keeping someone in long-term institutional care. The higher cost was with the higher level of need.

It’s just to give you an example. You can read the book if you want — more studies and more data.

We know that cost savings can be real. We know that this isn’t just hypothetical because, in fact, B.C. did it. If you look at the table at the bottom of this slide, you’ll see that in the mid-80s, there was, in fact, a shift through the decade to the mid-90s, where B.C. was successful in having more individuals on community care and fewer in residential care. They demonstrated a significant annual cost avoidance.

Why is integration necessary? Very quickly, if you simply expand community care for older adults — and we would certainly argue that that’s needed; please do expand community care — in all likelihood it will be a cost add-on if you don’t change the system, unless you’ve got a mechanism in there to truly shift costs. So you’re taking the dollars that you would have spent to put Mrs. Smith in a long-term facility, and you’re putting Mrs. Smith on home care — where the vast majority of older adults want to be, by the way. Then, you’re not going to save anything. Mrs. Smith is going to go on the community services, and Mrs. McDonald is going to come along and go into facility care.

You have to integrate that system. What we’re proposing…. We refer to it as the enhanced continuing care framework. It came out of a large national study which looked at populations with continuing care needs.

Time is moving on. Marcus, I’m going to move it on to you to quickly go through the three diagrams.

Basically, as Neena said, there was a national study. We looked at how systems of care were organized for four different populations. We found that the care needs and the issues with regard to those systems of care were all quite similar.

Based on that research, we came up with a framework for organizing integrated systems of care for elderly and other people with ongoing care needs. It’s a framework in that it can be adapted to local circumstances to make up more local models.

It has three components. One is basically a philosophical and policy component. There are five parts to that: a belief in the benefits of the system of care; a commitment to a full range of services; a commitment to a psychosocial model of care; client-centred care; and evidence-based decision-making. These are kind of the underpinnings that guide the development and day-to-day practical application of the model.

There are a number of best practices. There are five administrative best practices and five service delivery best practices.

The administrative practices. The first one is a clear statement of philosophy enshrined in policy which in fact reflects these philosophical components; a single or highly coordinated administrative structure; a single funding envelope; integrated information systems; and incentive systems for evidence-based care.

With regard to service delivery: a single coordinated entry system; standardized system-level assessment and care authorization; a single system-level client classification; ongoing system-level case management; and communication.

Essentially, what happens is you have an entity that has a wide range of services within it, one single administration, one budget, an assessment system that allows you to determine the level of need irrespective of the site of care, and a classification system that categorizes that so you can then look at what the relative costs are across sites of care.

The third component is linkages with other areas. I won’t go into this in depth. Essentially, linkages with hospitals — you could have something called hospital in-reach, where instead of having discharge nurses, the home care nurses would be within the hospitals and would actually be admitting them into home care while in hospital to smooth this transition. With primary care, one idea is to have physicians basically working in home care so that they can talk to their colleagues in hospitals and in the community to smooth the hospital-to-home transitions and so on.

There are a number of linkages that are listed here. We also have this in more detail in the supplement.

This framework was rated as the best for organizing systems of care delivery for older adults in an independent international review of such models and frameworks.
[ Page 308 ]

Now, the next slide, the application of the framework to older adults, shows that the continuing care system cuts across primary, secondary and tertiary levels of care. That is community, residential services and hospital services. It is integrated up and down from primary care to hospital care, and it is also integrated side to side so that there’s integration within each of these areas. Home nursing care can be done in cooperation with home support and so on.

So you have very good system-level case management that integrates all of the components that are within your system, and the components are listed here.

What does that mean, actually, if you’re a patient? The next slide goes through how people go through this kind of system. A client is referred by their family, their physician, whoever. There’s a single entry point. Then they can be admitted if they’re eligible. If not, they could be referred elsewhere.

Once they’re admitted, or are seen to be eligible, there’s an assessment and a care plan that’s developed. The client enters the system. As part of the assessment process, there’s usually consultation with the family physician.

There are really three parts once you enter the system. You can go directly into a long-term-care facility if your care needs are relatively high. If they’re lower to medium, or even if they are high, you could go to home care as well. If you have some complex care needs, you may in fact go to a specialized geriatric centre located in a hospital, which is also part of the system. People can then, over time, be reassessed and go through this loop again.

I’ll pass it back to Neena for the final concluding comments, key messages and also some commentary about criticisms that may be made and our responses to them.

N. Chappell: The key message is really for the health care system to recognize the need for an integrated care delivery model and that part of that is tertiary prevention, which we seem to be losing. As we emphasize more and more providing care to high-level-needs clients, we’re missing the low-level-needs clients and an opportunity for prevention. We offer the enhanced continuing-care framework as a solution.

As possible objections, some people have argued that this framework is too complex. We argue that it isn’t, obviously. In fact, in the late ’70s, B.C. implemented a similar model in less than a year by an ADM and two senior policy analysts. If the political will is there, we believe it’s doable.

Another criticism is that it would be far too costly. In fact, when it was implemented in B.C. in the mid-’80s, it was during the worst recession that B.C. had seen since the Great Depression. The idea, of course, of implementing the system is, in fact, to bring cost efficiencies within the system.

Certainly, some people today argue that allocating the resources to higher-needs patients is in fact appropriate and that’s what we should be doing. We obviously disagree with that point. As costs tighten, eligibility tightens, and you’re not adequately meeting the needs of older adults, and you are missing any opportunities to help individuals delay the need for more care and for more costly care.

Certainly recently, with the Better at Home program in B.C., some have argued: “Oh, we’ve looked after things.” Well, there isn’t nearly enough money in the Better at Home program for what’s needed, and those that the Better at Home program is targeted to are those that would not have been eligible for the home care program in the ’80s and ’90s anyway.

Of course, there are those who argue that home care isn’t medical care and that families and communities should provide that care, not the public health care system. In fact, we would argue that the types of care that we’re talking about emanate from medical needs. The fact that individuals can meet those needs without drawing on costly, skilled medical professionals should be a bonus and not something that’s used against them.

Very quickly, in the concluding comments, we argue that there is an opportunity here to provide both appropriate and cost-effective health care for an aging society. But if you want cost-effectiveness, you have to provide a comprehensive and an integrated continuing-care system. Comprehensive, including home support and other non-medical health care, to prevent a decline. And it has to be integrated in such a way that people working in the system are able to substitute lower-cost services for higher-cost services, and to remember that home is where all of us want to be, including older adults.

That is not to argue that we can wipe away the entire need for long-term institutional care. We’re not opposed to nursing homes when it’s absolutely required.

L. Larson (Chair): Thank you, Dr. Chappell, and also Dr. Hollander. I’m glad we were able to make the connection so that you could participate with us as well.

We will open this to questions. I have one first. I’m going to steal this from the Deputy Chair. She looked at, when we first started out, Europe. In Denmark, they actually assess all of their adults, seniors, at a certain age. I’m not sure if it was 70.

L. Larson (Chair): Every single person at 75 is assessed, in their home, to their current conditions and so on. Then they go back every year and see whether those circumstances have changed at all. Therefore, they can certainly catch anything that is shifting or changing very
[ Page 309 ]
rapidly and prevent that acute care process starting that much sooner.

I was thinking about that for our own system, but I’m trying to think under what umbrella would you do that — like, the public health care system to do that type of assessment, and then kind of integrate into the home support and the caregiver and that type of thing?

The whole idea is to try and pull it out of that acute care system entirely. It seems to me the only way to do that would be starting way back earlier with the process, so they never got there.

Right now, I don’t know how to stop that terrible cycle, the cost cycle that you’ve pointed out. Certainly, as soon as you empty an acute bed, somebody else gets in it. So there is no cost savings to get them out of that, or not at the way it is right now.

M. Hollander: A couple of points that you’ve touched on here. If you have an integrated continuing-care system, such as the one we’ve described, certainly when this was the case in B.C., it was quite well known that this system existed. The doctors knew about it. Families knew about it. Community health knew about it and so on.

What we found was that it was relatively easy to access the services for people who needed them, and the people who needed them were aware of the service. At that point, we did not see a need to have everyone assessed like they’re doing in Denmark.

There are certain other advantages and benefits for doing that, if you wish to do so. But in a good system that’s well known, if somebody has a problem, they will pretty quickly be referred to the system. You are in fact able to get people into the system relatively efficiently.

Now, with regard to hospital cost, you have a few different ways of going. You could actually close beds, but that’s usually not feasible.

What we suggest here is, we’re saying there is cost avoidance, and we’re using that instead of savings. What we’re referring to here is, if you could calculate the costs that are avoided, you can make adjustments in going forward, for example, in the ratio or the number of beds to population in hospitals.

You may build a few less beds, and that would essentially cover the costs, but that would be on a go-forward basis. Similarly, when we did the work in B.C. where we held back new bed construction for long-term-care facilities, and reinvested the money into home care, that was done on a progressive basis over time as well.

The results may not be instant, but on a systematic basis, there can clearly be either savings to the system or greater efficiencies within the system, in the sense that for the same money, you can provide care to a wider range of people.

N. Chappell: Just very quickly, I certainly wouldn’t object to your idea if it was in the public health care system. One of the things we’ve not managed to do is to figure out how to bring in the so-called third sector, right?

If you lodge something within the public health system, you might be able to then start bringing in more of the charities and community organizations and so on. That has a lot of appeal, I think.

J. Darcy (Deputy Chair): I’ll deal with another aspect, since I just got back from Denmark. I go for family reunions, and I check out health care when I’m there. I did this just last week. One of the things that I’ve investigated on both recent trips is integrated and coordinated community care for seniors.

One of the comments that you’ve made about an assessment…. One of the streams of health care is very specifically about the assessment of the needs of seniors in their homes before they’re released from hospital or after an assessment when they get an annual proactive visit.

The team of people includes, as you’ve mentioned, the non-medical home support as well as nursing, a bigger focus on rehab and occupational therapy, mental health as well as the social aspects. There’s also a very clear connection with the seniors activity centres, which we see as being not related to health, and they treat very much as part of a health and welfare system. Because the longer you can keep seniors active and fit and engaged, the less reliance there will be as you move through the health care system.

They also use their electronic…. Everyone on the team that visits seniors in their homes communicates with each other, whether it’s someone who’s been to see Frau Jensen to help with cleaning or whether it’s someone who’s been there to assist with rehab or whatever.

I wonder if you could comment — I’m sure it’s no doubt a system that you’re familiar with; it’s been studied quite a bit — on your awareness of what they’re doing there, what we can learn from it, what the barriers are. I mean, there are a lot of challenges in some other parts. In primary care, especially, they’re having some of the same big challenges we are. But it seems to me that on the home care side and prevention side with seniors, they’re doing it pretty well.

N. Chappell: I would agree. In fact, Denmark is one of the countries I mention when people ask: “What other countries should I be looking at for this?” Finland, it seems to me, is ahead of us as well. Australia is ahead of us. Japan, which no one really thinks of, has a national program for older adults which includes what they refer to as preventive services, but it’s activities, exercise, socialization — all of those sorts of things. In fact, it seems
[ Page 310 ]
to me that there are a number of countries that are sort of catching on to this. Canada still seems to have a bit of a prejudice against these activities as somehow being non-medical and not as worthy of serious attention.

From my point of view, personally, I don’t care how you do it. If it works to do it through public health, do it through public health — somehow integrate within the system what we refer to in sociology as social integration of older adults and the old neighbourhood concepts. Those may not all work the way they used to in the good old days, but there are still a lot of community organizations that we don’t think of at all when we think of health who can keep an eye on people, who will know if someone has missed their bingo lunch or whatever it is — those sorts of activities. Unfortunately, our history in Canada is that as soon as the budget gets tight, they are the activities we cut. So I absolutely support what you’re saying.

I did research in Bermuda many years ago, and they had a position in the health care system which was known as a geriatric assistant. That person would go to an older person’s house, and their mandate was: do whatever the older adult wants you to do. If that’s to sit and play cards with them, you sit and play cards. If that’s to go and get groceries, it’s go and get groceries. If it’s to take them to visit the daughter, you take them to visit the daughter.

The whole idea behind it was to help keep the older adult integrated. It’s not only good for their health, but it means all these other people are involved and helping them out as well.

I looked at the graph — the last one, page 7, graph 14. It mentions home and community care — of course, we discussed that just now — and in between, and on the side, long-term, chronic and residential care. We heard from some of the previous presenters. They also put an emphasis on daycare in the hospital. So I don’t know. Somehow in between the hospital services, that should be including the daycare program.

R. Lee: The daycare should be inside a centre or in between the community and the hospital.

M. Hollander: Typically, B.C. has actually had a very well developed adult daycare system compared to many other provinces. These are services where people can go to for half a day or a day. They’re typically included in the home and community care portion. Essentially, they can be located as stand-alone services, or they can be located within long-term care facilities. Typically, they’re not within hospitals, per se, but they would be within long-term care facilities. They’re very good for people in terms of being able to get them out, increase their socialization and so on. It’s particularly good for people who are living on their own and don’t have that much contact with other people.

We’ve certainly had that within British Columbia. I think we still do to some extent. But that would be the kind of service that we’ve provided in the past.

N. Chappell: So were you asking about adult daycare, or were you asking about geriatric assessment services?

R. Lee: Adult daycare — between home care and residential care. There’s a transition, and there’s a gap there, I think. From previous presenters, we heard about that.

I’m just wondering, in this model, maybe there’s a place for daycare and specifically….

N. Chappell: It would be in that box at the bottom that you’re facing, at the far right. Home and community care is where we put adult daycare.

M. Stilwell: I just want to go back. You were talking about the person who’s hired to just do what the person wants them to and the philosophy of having a client-centred system, which I think somewhat goes against standardized assessments. The nurse comes and says, “Well, this person can’t toilet themselves, so we’re going to send someone to do that,” even though that’s not what the client wants.

I’m interested in systems…. We have CSIL, for example, in B.C. for disabled people. You get the money. You buy what you want. I also heard of…. I think it was discontinued. You might know about it. In Britain they were paying neighbours to come and do these “non-medical” things. Also, it’s not so applicable to rural, but in cities there are these apartment towers that have turned into naturally occurring retirement communities who have huge potential to care for each other, form co-ops, social innovation.

It’s kind of a wide question, but I’m wondering what research is showing. Who is doing those kinds of more organic, I would describe, service provisions?

N. Chappell: Yeah. I guess where I would start is that you always want to assume that one size does not fit all. You want a range of options available.

There are older adults who would prefer that you hand
[ Page 311 ]
over the money and let them decide who to pay and who to hire. For that option to work for whatever proportion of the population you’re talking, you have to have the options available for them, right?

In some instances, they may want to hire neighbours or family or whoever. In other instances, they need to hire a service. If the services aren’t available, then you’re going to give them money, and they still aren’t going to get the service, right?

Where you actually find most of that research is not under “health” searches. You find it more under “health promotion,” those sorts of areas. There’s a huge body of research that certainly shows that it can work, but it’s not for everyone.

M. Stilwell: I just want to talk about that — you know, the services aren’t available. One of the assertions around this when this British system of giving…. It was for disabled people — the money. The assertion was that it would create new services and new jobs because nobody was thinking about those things. I think it was stopped before they could actually figure out if it happened.

N. Chappell: I’m not sure. Well, it may not have been going long enough for jobs to evolve. You do see, though, jobs evolving as needs arise. For example, in British Columbia and on the Island, I have a graduate student who got very interested in paid companions. She was interested, academically, in the contradiction between “I’m buying a friend” and how does this…?

It’s a very interesting thesis which I don’t have time to tell you about. But what was interesting in terms of what you’re talking about is it’s just been over the last several years. There are all sorts of people who have set themselves up privately to offer these services and the organizations — a lot of private organizations, like We Care and so on — which provide services for purchase. They have a category of paid companions. That’s an example of a…. It’s arisen out of a need. It’s often the adult children who hire the paid companion for the older adult. Not always — sometimes it’s the older adult.

M. Hollander: The literature that we’ve looked at in terms of providing funds directly to families or the patients is that there are kind of mixed results. What seems to be happening is that for the elderly, at least, and for others…. It seems to be most effective if there are very few or no strings attached.

There are a number of these types of things that have been developed internationally. People are concerned about safety of the client and of the care worker, and so on. The more regulation that’s introduced, the lower the uptake. Just to be clear about that, there is that kind of gradation. So if you wanted to set something up, like CSIL for older people, that would be something that you would probably want to consider as well.

M. Stilwell: I suppose we don’t know what…. I mean, there may be a small economy in this already, where older friends are being paid to do…. We don’t know.

N. Chappell: Well, there is some going on. We just don’t know how large it is, how extensive it is. But for sure, yeah.

N. Chappell: Well, just very quickly. You know, we’ve been in this area for a long time. Now that the baby boomers are elderly — I’m one of them — governments are getting all worried, and they’re paying attention. That’s wonderful. There actually is a real opportunity here, but it’s going to take tremendous political will to implement it, so we wish you the best of luck. Push ’em hard. Push them hard.

L. Larson (Chair): We’ve got a lot of wonderful material from a lot of people like yourself, and we will do that. Thank you very much, Dr. Chappell and Dr. Hollander. We really appreciate you taking part today.

Hansard Services publishes transcripts both in print and on the Internet.
Chamber debates are broadcast on television and webcast on the Internet.
Question Period podcasts are available on the Internet.

1) Vancouver Division of Family Practice	Dr. Margaret McGregor
	Dr. Sue Turgeon
2) Shuswap North Okanagan Division of Family Practice	Dr. Joan Bratty

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)
	Bill Routley (Cowichan Valley NDP)
	Jane Jae Kyung Shin (Burnaby-Lougheed NDP)
	Dr. Moira Stilwell (Vancouver-Langara BC Liberal)
Clerk:	Susan Sourial

3) Canadian Centre for Policy Alternatives	Marcy Cohen
	Iglika Ivanova

7) Centre on Aging, University of Victoria	Dr. Neena Chappell
	Dr. Marcus Hollander

REPORT OF PROCEEDINGS(Hansard)

SELECT STANDING COMMITTEE ON HEALTH

REPORT OF PROCEEDINGS
(Hansard)

SELECT STANDING COMMITTEE ON
HEALTH