Health — Issue No. 12 — Wednesday, April 15, 2015 (HTML)

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

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

Initiative for a Palliative Approach in Nursing (iPANEL), Evidence and Leadership:

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	169
K. Stajduhar
Committee Meeting Schedule	174

L. Larson (Chair): Good morning, everyone, and thank you so much for being here this morning. We are very fortunate to have a presentation this morning from Dr. Kelli Stajduhar. She’s brought with her Dr. Patricia Coward and also some other people that are here to listen in.

Thank you so much, Doctor, for being here this morning. We’ve all had the material that you’ve done under this iPANEL thing and would love to hear from you directly about your work. We’ll let you go through your presentation, and then we can ask you questions.

First of all, I just want to thank you for the invitation to present to the Select Standing Committee on Health. I am Dr. Kelli Stajduhar, and I am the lead academic investigator on iPANEL, the Initiative for a Palliative Approach in Nursing. I’m here with Dr. Pat Coward, who is the chair of the iPANEL advisory board. We are here presenting, on behalf of iPANEL, some of our ideas and recommendations about how to improve care for people who are at the end of life in British Columbia.

Just a little background about who we are. iPANEL is a team of nurse-scientists and nurses who work in clinical leadership and administrative positions in B.C. health authorities. We are all committed to providing better quality of care for people at the end of life in our province.

We are funded by the Michael Smith Foundation for Health Research through the B.C. nursing research initiative. We’ve been working together for about five years now. Most of our members are made up of academics in most of the major universities in British Columbia as well as from all of the B.C. health authorities, and we work in very close collaboration with the B.C. Ministry of Health. The report that we submitted, actually, is a report that we presented to the assistant deputy ministers of Health in the fall of last year. That’s what we’re going to be talking about today.

What do we do? We are a research initiative, and really what we aim to do is synthesize the best evidence and conduct research looking at how to better integrate a palliative approach into the care of British Columbians who are facing advancing chronic life-limiting illness. We work very collaboratively as researchers, clinicians and administrators to synthesize and conduct research that has practical relevance toward improving care for people at the end of life that informs health service decision-making and policy development and we hope will result in providing evidence to create sustainable changes to the delivery of health care for this population of people.

Why is the issue of a palliative approach important to us in British Columbia? You will hear from other people that come to present to this committee — and I’m sure you’ve heard this many times before — that we have a population that is aging. Most of the people that interact with our health care system are people that are living with advancing chronic life-limiting illness, often with multiple interacting medical problems and social problems.

About 30,000 people in British Columbia die every year, and most of the people that die in our province are dying as a result of end-stage chronic illness — illnesses such as heart disease, kidney disease, liver disease and lung disease, cancer, dementias, Alzheimer’s disease and general frailty. Of that 30,000 people that die in our province every year, only about 16 to 30 percent of all people who die are identified as people who are dying and have access to palliative care. Said another way, about 75 percent of all British Columbians who are dying are never identified as people who are dying. Therefore, they don’t have access to palliative care.

There are lots of reasons for that, the primary reason being that most people in this group are people who are dying of diseases that we have not traditionally thought of as terminal. We don’t think of people with heart disease and lung disease and kidney disease and liver disease as people who are experiencing an illness of which they are going to die from, but people who are diagnosed with heart failure, chronic obstructive pulmonary disease or kidney disease where they’re in need of dialysis are people who are on a dying trajectory.

The majority of people who access palliative care services in our province — these are services that are specially designed for people who are dying — are people who have cancer. Most people with advancing chronic life-limiting illnesses do not access these services, so you have a situation where you have a large group of people who are on a dying trajectory — these are people who we wouldn’t be surprised if they died in the next year — and they’re not getting any access to service.

Most people who die in our province die in in-patient care settings. Most people die in acute care hospitals. Those are the people who are sitting in medical beds in our acute care units.

Another large proportion of people who die, die in the residential care sector. Actually, the average length of stay in residential care right now in British Columbia is 15 months. People, essentially, that come into residential care in our province are people who are going to die. We don’t have any kind of services designed for people in these settings.

A smaller proportion of people die in home, and a yet smaller proportion in hospices.

We have some really good programs for palliative care in the province. In all urban settings we have palliative care units in acute care hospitals. In some settings we have consultation teams, which means we might have a doctor and a nurse or a social worker, who are able to go into the acute care setting, into a medical unit, and provide consultation support to the people who work on that unit to provide better care for people who are dying.

We have some hospices that are like residential care kinds of settings, and we have a few free-standing hospices in the province. But specialized palliative care units and programs…. While they’re essential for end-of-life care, having that alone is not enough. It will never be. To be able to deal with the 30,000 people who are dying in our province, it will never be that we will ever have enough palliative care beds. It will never be that we will ever have enough specialized palliative care services to provide care to this population.

It’s not feasible. It’s not economically viable, and it’s actually not desirable for a large number of these people. Thinking that just increasing the number of palliative care beds is going to actually meet the need is not really going to meet the need at all.

I have this diagram on this slide because it gives a bit of a depiction of what I’m trying to get across here. In the bottom of that triangle — that’s where the largest number of people sit, and those are the people that actually can be cared for very well by the primary care system.

When I say “primary care,” what I’m defining as primary care are people who are getting good care from their family doctors, people who are getting good-quality, continuity-rich care from home and community care providers, home care nurses that go into the home, home support workers that go into the home and residential care.

I guess I should also mention that the most prevalent primary care providers in our province are family members. The large majority of people who are dying in our province can be provided with good-quality palliative care if we have good systems in primary care in place.

We have a smaller number of people for whom needs are complex and can still be managed in the primary care systems, but they need a little bit of help and support from people with specialized knowledge in palliative care, and those are the people in the B group or the intermediate group.

Then we do have a segment of the population for whom needs are so complex at the end of life — their pain might be out of control; they might have complex family issues — that they really need the care from people who have specialized expertise in palliative care. They are at the tip of that triangle.

What we have are a large number of people in our province who are dying who don’t have access to that tip of the triangle, and it’s kind of the luck of the draw about whether or not they get good-quality care at the bottom of that triangle.

What do I mean when I say “a palliative approach,” because I’m not saying “palliative care”? What I mean by a palliative approach is taking those fundamental principles from palliative care — the expertise and knowledge that we know from palliative care — and adapting that knowledge in a way that actually meets the needs of this larger group of people with advancing chronic illness.

Palliative care was originally developed out of a cancer care model. When people are dying from cancer, we have a pretty good idea of what that trajectory is going to be. We have a trajectory that kind of goes along. People are getting treatment, and then something happens, and they die. We know how to predict when people are going to die, then, and that’s what our palliative care system has been developed on.

People with advancing chronic illness don’t have that trajectory. People with an advancing chronic illness have a couple of different kinds of trajectories. If you have dementia or Alzheimer’s disease, you go along slowly over time, and usually, you die. We have no good way of predicting how long that’s going to be.

If you have a disease like heart disease or lung disease, you have a trajectory that goes something like this. You are stable for a while, and then something happens, a crisis, and you dip down. You end up in an acute care hospital, and you get lots of intervention. You might come up again but not quite as high as you were before. You go along. You have another exacerbation, maybe, two months later. You end up back in the hospital. And that’s the way it goes, but it is always going down. It never goes up.

It’s those people in the down dip, actually, and that kind of care that are actually the most costly in our health care system, because there are many people in that kind of trajectory that end up getting treatments that are not going to be beneficial for them, and nobody’s ever talked to them about that.

It’s a very, very sad thing when you go and you see somebody in the last hours of their life who is suffering and is in pain and their symptoms are so out of control and their family is in a crisis, and nobody has ever talked to them about the fact that they’re dying. It’s not a good situation, and it happens more often than not, and it makes health care providers completely morally distressed.

So we’re talking about adopting the foundational principles of palliative care, adapting it to those groups of people and embedding it into the care systems that already exist. We’re not talking about developing a whole new system of care.

We’re talking about embedding these principles into a system of care that already exists and moving it upstream so that we have a situation where when we know that somebody is on a decline, it actually it might be a good idea to talk to them about that earlier rather than later,
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because families then have time to plan. They have time to deal with what is coming ahead, and patients and families tend to have fewer requests for aggressive therapies that are going to have no benefit for them.

The number of people dying yearly of chronic diseases in Canada and British Columbia will increase. We have to strengthen our health care system to meet the demand in a way that is sustainable, that is patient- and family-centred, that provides excellent and equitable access to care for people, and that promotes the best possible outcomes for patients, for families, for health care providers and for the health care system.

For people in health authorities that are in decision-making positions, the challenge is here now, but it’s going to grow larger. Already those people with advancing, chronic life-limiting illnesses are the people that are filling our emergency rooms. They are the people who occupy a large number of acute care hospital beds, or they languish at home or in residential care, getting less than optimal care because nobody is even identifying the fact that they are on a dying trajectory.

We have very good evidence from iPANEL and from lots of research that’s been done in our province and in Canada that a palliative approach, a strong affiliation to full-service, continuity-rich, community-based primary health care, coupled with effective advanced care planning — that’s actually talking to people in advance of what’s going to happen — and support for their family members reduces hospital admissions.

It reduces emergency room visits, it facilitates patients’ preferred location of care and death, and it improves satisfaction with end-of-life care. We need integrated models of care if we’re going to meet the increasing demands at the end of life as a result of the aging of our population.

The recommendations that we are proposing from iPANEL and that are in this Dying to Care report that you have are recommendations that we believe, in iPANEL, will help prevent British Columbians who are the sickest of sick in our province — people with advancing, chronic life-limiting conditions — from continuing to dwell in what Joanne Lynn calls “the indistinct zone of chronic illness that has no specific care delivery system.” It’s going to move us forward to creating a much more sustainable health care system that is responsive to the needs of the people in our province.

Not an unimportant kind of statistic that is recently put forward in the primary and community care strategic policy framework from the B.C. Ministry of Health, care for people with advancing, chronic life-limiting illness is expensive. While accounting for less than 2 percent of the provincial population, in this group of people that are coping with the end of life, they use 35 percent of all services accounted for in the health system’s matrix. It’s not a minor issue.

So we have three recommendations. The recommendations are in the Dying to Care report. They are all linked to strategic priorities of the B.C. Ministry of Health, and we have specific strategies for how we think that those can be accomplished.

We think that we need to implement an integrated palliative approach across the health service continuum. We need to extend and expand chronic disease management and primary care strategies to include an integrated palliative approach to care.

As the ministry is moving forward with this, we need to apply a population focus in community, acute care and residential care settings in order to better support people in their transitions through care.

People move through these systems all the time, and they fall through the cracks. The systems are working in silos. They’re not well integrated, and this is when you get people in the newspaper or coming to you as an MLA, complaining about the care that their family member received. It’s because we don’t have an integrated system that is helping us to move forward a palliative approach.

An integrated palliative approach to care is a vision that we believe should be adopted by the province. Leaders in British Columbia health authorities and in the Ministry of Health actually recognize the limits of the current system in meeting the needs of this population. Emerging results from iPANEL research and engagement across British Columbia with the number of people that we’ve engaged suggests that integration of a palliative approach into home, residential and acute care settings is an efficient, safe and humane way to better serve patients and their family members and fill a costly, unmet need for people in British Columbia.

L. Larson (Chair): Thank you very much, Doctor. Very interesting, and certainly, you’ve hit on a lot of points that we have seen through the literature we’ve received on this committee and that have been raised by members of this committee.

I’m going to first ask Dr. Stilwell, who’s on the phone, whether she’d like to ask a question. Otherwise, we’ll forget all about her. Moira, did you have a question you’d like to ask — or a comment?

M. Stilwell: I don’t have a question. I just wanted to, first of all, thank the presenters and also to thank you, Linda, and your co-Chair for setting, in many ways, a precedent to have providers and scientists come directly to the committee. I think it’s really helpful.

J. Darcy (Deputy Chair): Thank you for a marvellous presentation. It’s really getting the wheels turning. I’m hearing echoes of a book that I just was reading a couple of weeks ago by a Dr. John Sloan, I think it was, who talks
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about how our health care system is failing the elderly. This is a doctor whose practice, as you probably know, is focused on caring for the frail elderly in their homes, including dealing with issues of palliative care, and so on.

I know the Chair knows this because I refer to it often. I was born in Denmark, go back for family reunions regularly and always take a bit of a busman’s holiday. Last time I was there I checked out integrated community care for seniors, where there are some really significant developments, I think, approximating what you’re talking about, which is continuity of care, different care providers, different stages of life and the right to live and die in your own home — live as long as you can and die in your own home if that’s your desire and if you’re able to — actually enshrined in law. I just want to really thank you for the presentation.

I’ve also heard, interestingly — well, not surprisingly — when you talk to front-line nurses or front-line care aides, if you talk about palliative care beds, they said: “But we all need to be trained in palliative care.” I think that’s one of the really significant things that you’ve touched on. I’d like you to talk a little bit more about the upstream approach that you’re talking about as well as the issue of professional development and training for people who work in….

K. Stajduhar: It’s really interesting because I’ve been a nurse for almost 30 years. For most of my career I’ve worked in oncology and palliative care and gerontology.

I would say that 30 years ago we all thought that we had a responsibility for caring for dying people. I think what’s happened — and I think it’s always an unintended consequence of specialization — is that when we specialize and medicalize things like dying, we take away the capacity sometimes of the kind of generalist care provider to provide good care.

We’ve done some research with nurses in acute care settings — nurses and care aides and physicians — and in the residential care sector and in home and community care. What a lot of people are saying to us now is that if they’re caring for somebody who is dying, their immediate kind of concern is: “How can we get that person to a palliative care unit, or how can we get palliative care to come to them?”

We’ve kind of lost this idea that actually people die everywhere in our health care system. Everybody needs to know how to do this. They might not need to have the skills at the tip of that triangle, but they all need to have a general ability to provide good quality palliative care. So part of the upstream approach is actually capacitating those people in the health care system and creating a system and a structure that allows them to do that work, right?

It cannot be that we will ever be able to send everybody to a palliative care unit, and not everybody needs it. If you can imagine having been cared for by your GP all your life or being in residential care, and all of a sudden somebody moves you to someplace else, that’s not a way to go. For people who have complex issues, it will be required for sure.

But absolutely, if we don’t actually get on the idea of having people see people on a dying trajectory — first of all, identifying that people are on it and then actually believing that this is something important that they need to attend to — we’re just going to continue to have the same kind of issues that we’re having right now.

D. Plecas: Thank you for your presentation. I’m sorry I missed the first part of it.

Like my good friend opposite, our co-Chair, I’m also reading that book, Dr. Sloan’s book, but I’m not finished it. I just finished a book, Being Mortal.

D. Plecas: One of the things that, of course, is a main message there is that doctors have been trained to keep people alive under any circumstance and haven’t been as attentive as they could be to: “Well, what are we really doing here?” One point he makes, of course, is: “Let’s have those conversations with people, and let’s have conversations that are about things, as well, other than health care.”

I think there’s been some research that tells us when you do that, you dramatically impact costs and add to quality of life in the final stages. But I didn’t see any of that in here — that sort of orientation. It seems to me that unless we do that, unless we get to that place where we say to doctors, “Shift gears here,” there’s nothing in it for them.

K. Stajduhar: It’s not in here because we were focusing on presenting the results from our iPANEL research. But it’s absolutely the case.

About five years ago some colleagues and I were funded to develop a networks of centres of excellence, which is a federal $50 million initiative on actually improving care, doing research to improve care for the frail elderly. A big stream of research in that initiative has to do with what are we doing with frail elderly people from the perspective of medical care.

My colleague who led the development of that grant is a critical care physician, and he stepped out of critical care because he is so distressed by the type of intervention that we’re doing for people — not only because that’s what doctors are trained to do, but that’s what a lot of people in society are asking for as well. They’re asking for it probably because they don’t actually know what that means.

Somebody gets really sick, and they’ve been sick from a disease of which they’re expected to die, but somebody comes in and says: “We need to do this. We need to do this. We need to do this.” The cost of health care is related
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to the intervention. We have people who are compelled to keep treating and keep treating, so that orientation to treat is so strong, particularly in acute care. It is so strong.

Then we have those situations where these conversations are not happening. If we don’t get on the business of really looking at where people are at not just in their disease but as people and what they want and what they need and what they desire and if, as health care providers, we can’t feel comfortable in talking about that, we have a problem. We have a big problem.

You know, I have grand ideas of…. I just think we need to kind of blow it up a bit, in a way, because the group of people that require care from us these days, the larger group, are these people. They’re not the people in car accidents and traumas. Those people are there, and that’s what acute care services are for, but that’s not what’s filling up our acute care beds. Everybody wants to treat and cure.

R. Lee: Thank you. I’m probably along the same line. Sometimes it’s not just the health care providers having this kind of discussion. I think the family members and the patients…. I think that in the system sometimes it’s the family members who want to have more intervention. Probably the patient doesn’t want to.

R. Lee: But that kind of decision-making process…. I think information is very important, education. I think there’s still a long way to go to somehow convince the general public, especially the sons and daughters of those patients, that this is the right way to go — the trajectory is somewhere out there. What do you think about that?

K. Stajduhar: Completely. This is a family issue. I mean, most people who come into our system have a family. Most people may not have had any conversations about this, and our work is to educate the public about the importance of advance-care planning and having conversations with your families and getting things in place and revisiting those conversations. But I can tell you that we know from our research that health care providers also are not comfortable, so much, talking about this — don’t necessarily have the skills to actually facilitate those kinds of conversations.

Yeah, we have lots of situations. These are the situations that cause us the most concern — when we have a patient who is dying and a family member says, “But I want this done, and I want this done, and I want this done,” and nobody has talked to anybody, and nobody is on the same page. That’s when we run into a lot of trouble, and that’s what causes everybody a lot of distress, and it doesn’t make for good-quality care at all.

You know, good, upstream, advance-care planning. That’s what palliative approach is about — actually taking all those things that we do really well in palliative care. If you come into a palliative care unit, the first things that we are doing in a palliative care unit is talking to the family and the patient about what their goals of care are and how they want to see the end of their life unfold.

If we can move that conversation upstream, we will be much more successful at keeping people out of ICUs and critical care that don’t need to be there, keeping people out of emergencies and acute care hospitals, and giving people the right care where they need to be in the way that they desire.

L. Larson (Chair): From my perspective, too, it’s a culture that we’ve had in society and, certainly, through the medical profession of “we must save this person at all costs.” Are we actually…? And you do have to start further back into the system. Right at university, when we’re bringing in nurses and doctors and going through that process, this has to become part of that process in order for that culture to start to move through the medical system itself.

On the flip side of it, when you get to the family end of it, it is quality versus quantity of life, and it is the ability to make those kinds of decisions early enough on in a person’s aging life, recognizing that it is the end-of-life path. It may be a ten-year end-of-life path, but it is nonetheless an end-of-life path.

Certainly, we don’t like to talk about it, right? It’s something that we, as a society, just have a tendency to…. There’s sensitivities around that.

I have a 94-year-old mother who lives with me, so I mean, this is…. She doesn’t accept the fact that she’s on that path, which is probably good for her because she’s still managing on her own, but you know it is that problem with society in general.

Thank you for, obviously, what you’ve been going through. The process you’ve gone through has identified those very issues, that we need somehow to back further up in the process and get people more comfortable with dying. It’s nothing you can avoid.

K. Stajduhar: Well, I have a sense that if we adapt our messages to where people are at…. What this book talks about is how we actually meet people where they’re at and how we then support health care providers to know how to do that well. We can’t go to everybody with the same script, because everybody is in a different place — if we can adapt what we know, the excellent knowledge that we know from palliative care, in a way that is going to be useful and meaningful to that individual person in their context. I don’t have a problem. People don’t have
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a problem talking to me about these things if we do it in the right way.

L. Larson (Chair): No, you’re 100 percent right. To Judy’s comment about what was going on in Denmark or in those countries, they have a system where they actually identify everybody. I think at about age 70 they do a complete analysis of that person at that age, and then they follow them from that point onwards. That’s how they keep them out of the system, because they’re identifying early enough that you are on the last third or 20 percent or 10 percent of your life. They do a much better job that way because they take that early enough in the process to do that.

K. Stajduhar: That’s right. And they capacitate their primary care system to do it.

L. Larson (Chair): Yeah. It is a very effective system. This is like turning one of those gigantic ships in mid…. We know it’s going to take a lot of work on government’s part and on everybody’s part to do this.

Thank you very much for the work that you’ve done and for coming in this morning to talk to us and being very frank and candid about the types of issues you dealt with and the types of responses you got. We really do appreciate that.

We’ll look forward to more things coming from you as time goes ahead. Like I say, thank you very much for being here this morning.

L. Larson (Chair): For the committee, just stay put for a few minutes, and we will finish up our meeting this morning.

I’m just going to follow up here. It was wonderful to have that presentation, but I want, from the committee’s perspective, to raise a couple of things.

One of them is that for many of us, Wednesday morning creates great conflicts. I’m wondering if there aren’t a few Mondays that we could substitute over the next five or six weeks instead. I will get Susan, perhaps, to send out possible Mondays because there are some fairly large, fairly important committees that the rest of us are involved in, myself included, that are now hitting on a Wednesday as well. There’s a bit of a conflict, so if that’s all right, we’ll send out just the possibility of switching one or two of those Wednesdays to a Monday morning instead.

The other thing is, too, I receive — I’m sure as most of you do — through e-mails and from different people, lots of information sometimes that’s extremely timely and relevant to what we’re doing here as a committee. I would just like your permission to distribute three different things that I have picked up, either through newspapers or through e-mails, to you as a committee so that you can have a read over them, if that’s all right with everyone?

Is there anything else anyone else would like to bring up before we adjourn for this morning?

J. Darcy (Deputy Chair): I think that was exactly the right presentation to start off this segment. I know that we’ve been searching, because we have such a volume of presentations, and what’s the best way to dig in to them and just to start hearing from people. I think they were the only ones available, but I was going to say well chosen. They really helped to frame the issue.

I think as we’re planning our other presentations, it probably makes sense for us to start with those presentations that sort of give us a bigger picture on the issue. Then we start drilling down into some of the more specifics in each area, because this was very valuable.

L. Larson (Chair): I agree with you. It was. I agree with you 100 percent. Those basic things about how we train people right from the very beginning, how we identify people the first time they step foot inside the system, and then how we deal with them for the rest of their time inside the medical system — those are the three points that we need to flesh out and, again, bring in people now who maybe are very specific in those areas in order to put together a report of recommendations that makes sense in today’s world.

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

REPORT OF PROCEEDINGS(Hansard)

SELECT STANDING COMMITTEE ON HEALTH

REPORT OF PROCEEDINGS
(Hansard)

SELECT STANDING COMMITTEE ON
HEALTH