Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 6 - Evidence - May 5, 2016
OTTAWA, Thursday, May 5, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:30 a.m., to study the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the Chair.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie from Nova Scotia, chair of the committee. I'm going to ask my colleagues to introduce themselves, starting on my right.
Senator Seidman: Judith Seidman, from Montreal, Quebec.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
Senator Raine: Nancy Greene Raine, B.C.
Senator Ruth: Nancy Ruth, Ontario.
Senator Peticlerc: Chantal Peticlerc, from Quebec.
Senator Eggleton: Art Eggleton, Toronto, and Deputy Chair of the Committee.
The Chair: Thank you, colleagues. For the record, I want to remind us all that our committee is continuing its study of the issues of dementia in our society. Today, we are going to have two witnesses before us. We will start with presentations from the witnesses. I will start with the order in which they're listed on the agenda. At the end of their presentations, the floor will be open for questions.
I invite Candace Chartier, Chief Executive Officer for the Ontario Long Term Care Association and Chair of the Canadian Alliance for Long Term Care, to please proceed.
Candace Chartier, Chief Executive Officer, Ontario Long Term Care Association: Good morning, everybody, and thank you for the invitation to present today. I am here today wearing two different hats. I hope to contribute to your study an understanding of dementia care that is grounded in both policy and practical experience. Before taking my current role, I worked for many years in long-term care homes, starting as a bedside nurse and ultimately moving into management.
I'd like to start today by talking about the current shift that's taking place across the country to keep people at home as long as possible. Governments are hoping the increased investments in home and community care will mean that a much smaller proportion of the population will need long-term care in the future. This is an admirable goal, but it may not be possible to the extent that we all hope, particularly for people with dementia. It is critical not to lose sight of the vital role that long-term care homes play in dementia care now and in the future. More than ever before, the seniors in long-term care today need 24-7 intensive care. They're in long-term care because they can no longer be cared for at home, even with additional home and community supports.
As you have heard from other panelists, we are expecting a significant growth in the number of seniors with Alzheimer's and other dementias over the next 15 years. I'd like to use Ontario's story to illustrate what's happening on the ground.
The proportion of long-term care residents with dementia has been increasing rapidly. More than 62 per cent of people in long-term care homes now have Alzheimer's disease or another form of dementia. Because they are staying at home longer than ever before, seniors are coming into long-term care homes at a later stage of the disease when their needs for support are much higher.
Let me explain: As their disease progresses, many people with Alzheimer's or other dementias lose the ability to take care of daily activities, such as feeding themselves or using the toilet, because they no longer know how to do these activities. About 80 per cent of people with dementia will also experience behavioural and psychological symptoms during the course of their disease such as agitation, wandering, repeated vocalizations, repetitive behavior, hoarding or paranoia. Half of long-term care residents exhibit some level of aggressive behavior such as yelling or hitting when they are upset. All these symptoms are commonly called "responsive behaviors'' because people are responding to some sort of trigger or series of triggers in their environment, and they no longer have the cognitive ability to express themselves in other ways.
The reason I'm providing this overview is that the psychological and behavioural symptoms of dementia can be extremely difficult for family caregivers to manage in the community, whereas long-term care homes specialize in helping to create a safe and secure environment with trained staff and programs that help to reduce the residents' distress and the resulting behaviours. I can tell you from my frontline experience that the tipping point for placement in long-term care is most frequently caregiver burnout.
I mentioned earlier that when residents come into long-term care, they have higher needs for support with daily activities. These increased needs for support mean that more staff time is also needed to provide that care, particularly care that is personally tailored for each person's abilities and their changing stages of dementia. It also takes more time to ensure that that care is provided in a way that does not trigger those behaviours.
We have been advocating for more staff in long-term care as well as expanding the existing scope of practice for health care providers. The long-term care population is rapidly changing, while funding and staffing still need to catch up. We are already seeing a difference that additional investments can make. One relatively new program in Ontario is called Behavioural Supports Ontario, which is showing significant early success in improving the quality of life for people who are experiencing the behavioural symptoms of dementia.
The government offered funding for this program to the health regions, allowing them to decide how to implement the program. About half of the health regions chose to invest in specially trained teams of a nurse and a personal support worker placed in each long-term care home in their region. These teams take specialized training that teaches them how to identify what's triggering residents' behaviours, how to make changes or put new activities in place to reduce those triggers, and how to gently approach and redirect residents when they are upset.
In the last few months, new data has shown that these teams help to reduce overall levels of aggression, the need to use anti-psychotic drugs and the need for restraints. We have been urging the Ontario government to fund one of these teams in every long-term care home in the province and are stepping up our efforts in light of these new findings.
My staff recently had the privilege of seeing one of these behavioural teams in action. They were operating a doll therapy program on a unit for people with advanced dementia. Many of the residents were at the stage of the disease where they were really hard to reach in other ways. One resident suffered from repetitive pacing, which was stressful for her and aggravated the other residents around her. Another had lost the ability to understand speech and, whenever a resident tried to communicate with her, she would become upset and raise her fist and strike out.
The team set up the doll therapy program where residents were encouraged to wash and dress the dolls several times a week and to look after them throughout the day. Caring for these dolls gave the residents a sense of purpose and pleasure, and their behaviours dropped off because they now had a meaningful focus.
The team put a number of other programs in place across the unit as well and mentored other staff. Within just one year, the incidence of conflict between residents has declined, and the unit has managed to cut the use of anti-psychotic medications by more than 50 per cent. This is only one example, but the point is that these specialized teams identify what will help to reduce the distress that many people experience with dementia and run tailored programs that most homes can't offer because they lack the resources.
As a health care professional, a long-term care specialist and a family member of someone with early Alzheimer's disease, I am concerned on many levels about how our society will manage the aging population and the increased number of people with dementia that are predicted over the next 30 years. It is critically important that we get the right balance of services and investments between all the options for care, particularly home care and long-term care.
One of the options for long-term care homes to play a larger role is a community hub, providing not only residential care for people with dementia but also offering the home's specialized training and expertise for on-site adult day programs, respite for caregivers or other seniors services. This is just one of the possibilities I have been discussing with the Ontario government as they plan their provincial dementia strategy.
At the Canadian Alliance for Long Term Care, we've been advocating the federal government for a national dementia strategy that provides a framework and guidelines to support all provincial efforts.
Recently, the Canadian Alliance for Long Term Care conducted a national public survey where 92 per cent of Canadians said the federal government should ensure that long-term care homes are prepared for the rising number of seniors with dementia, and 89 per cent believe the federal government should lead a national long-term care strategy with benchmarks to address inequities in access and funding for long-term care. I think the Canadian public sees what is coming down the pipeline, and they want to make sure that high-quality, long-term care is available for their loved ones with dementia and for themselves when they need it.
Thank you.
The Chair: Thank you very much. I will now turn to Louise Hanvey, who is Project Manager with the Canadian Hospice Palliative Care Association.
Louise Hanvey, Project Manager, Canadian Hospice Palliative Care Association: Thank you for allowing me to present to you today. I would like to begin by providing some background about our association.
The Canadian Hospice Palliative Care Association, or CHPCA as I'll call it, serves as the national voice for hospice palliative care in Canada. Advancing and advocating nationally for quality hospice palliative care, our work includes public policy, training and education, and awareness projects such as the Advance Care Planning in Canada Project Speak Up: Start the conversation about end-of-life care. We have also created a national framework for integrating a palliative approach to care across Canada called The Way Forward. This was funded by the federal government between 2012 and 2015.
CHPCA has over 3,000 members composed of hospice palliative care workers, volunteers and caregivers from all Canadian provinces and territories, a directory of over 600 registered hospice palliative care service providers and significant social media reach.
Every year, approximately 260,000 Canadians die. Dementia is a growing cause of death in this country and we need to pay special attention to it. Canadians die in acute care hospitals, complex continuing care facilities, at home, in long- term care facilities, in residential hospices and sometimes in shelters. Our system needs to be flexible enough to provide hospice palliative care for Canadians no matter what they are dying of or where they are being cared for. The care of those with advanced dementia is often difficult to coordinate, and 70 per cent of all individuals with dementia will die in long-term care facilities.
The Way Forward initiative promotes an integrated palliative approach to care that focuses on meeting a person's and their family's full range of needs — physical, psychosocial and spiritual — at all stages of frailty or of chronic illness and not just at the end of life. The goals of an integrated palliative approach to care include that Canadians will talk with their care providers about advance care planning and discuss their wishes early and often as their illness progresses or as they age.
People who are aging, who are frail or who have chronic illnesses will receive hospice palliative care services integrated with their care in the setting of their choice, and people who are aging, who are frail or have a chronic illness will receive consistent, seamless, integrated care if and when they must change settings.
Those living with dementia often need care over many years, with a slow and constant decline. The impact of an integrated palliative care approach to care for these Canadians will include that all care settings are able to provide holistic care that respects the person's values and preferences. It means that more people in Canada and their families will have access to high-quality, integrated palliative care services that reflect their goals, help them enjoy a good quality of life and ensure that they have a strong voice in their care; that is, they have autonomy. It will mean that people will be able to move seamlessly from one care setting to another if their needs change, and there will be less need for emergency room visits and unplanned hospitalizations, with a system able to make more effective use of existing resources.
As I said earlier, an integrated approach to palliative care includes advance care planning. Advance care planning is a process of reflection and communication. It is a time when people reflect on their values and wishes, and they let others know what kind of health and personal care they think they may want in the future if they are no longer able to consent to or refuse treatment on their own behalf. Advance care planning includes deciding on a substitute decision- maker, the person chosen to make personal decisions, including medical decisions, for a person when they are no longer considered capable of doing this alone. The laws regarding substitute decision-makers vary from province to province to territory in Canada.
Ideally, advance care planning should start when we're healthy, as we never know what lies ahead. However, it is critical that advance care planning happens as soon as someone is diagnosed with dementia, and these conversations need to be ongoing as the disease progresses so that people living with dementia can continue to express their wishes, particularly to their substitute decision-maker, while they are still capable and as the disease changes.
Everyone who is involved in the conversation needs to understand how dementia progresses and what a person's needs might be at the end of their life. The conversation could include a discussion about where the person would prefer to die — where they are now living, in a hospital or in a hospice? What would be important at the time of their death — having family and friends close by, religious or spiritual rituals, having open windows, having music played? Are there certain medical interventions they would or would not want; for example, feeding tubes or cardiopulmonary resuscitation?
Dementia progresses in such a way that the person with dementia will eventually become unable to express their wishes. Engaging in advance care planning is the only way their substitute decision-maker will know what their wishes are and be able to make decisions based on them.
When we think of how we would want to die, most of us would like to be at peace, pain-free and have our loved ones close by. We want to retain our dignity and have our wishes respected. Research has shown us that this is far likelier to happen if we have engaged in advance care planning.
For example, the research tells us that individuals who do engage in advance care planning or appoint a substitute decision-maker are more likely to have their wishes known and followed. It significantly reduces stress for patients and for families. Patients are more satisfied, as are their families and caregivers and substitute decision-makers. Most importantly, they have a better quality of life and death. They have fewer life-sustaining treatments and lower rates of admission to intensive care units, which translates into less costly care in the last weeks of their life.
It is clear, therefore, that engaging in advance care planning is an essential part of a palliative approach to care for people with dementia. The CHPCA is facilitating the Advance Care Planning in Canada initiative, including the campaign Project Speak Up: Start the conversation about end-of-life care. On our website, www.advancecareplanning.ca, the general public, professionals and community organizations can find resources to help them engage in advance care planning.
In closing, the CHPCA is calling on the federal government to consider a federal strategy for hospice palliative care that would work towards ensuring universal access for all Canadians, including an integrated palliative approach to care across all settings. We're calling for a national awareness campaign for hospice palliative care, including advance care planning, to help inform Canadians of the options available to them.
We're asking for the provision of readily available access to resources and information for physicians, for caregivers and for patients regarding their options at end of life.
Thank you again for asking us to present this information.
The Chair: Thank you very much. I will now turn to my colleagues.
Senator Eggleton: Thank you very much to both of you. Let me start with Ms. Chartier.
We're told that there are long waiting lists to get into long-term care. We know that the situation is going to get more acute in time, because over the next 20 years the number of seniors will be doubling. There will be more and more dementia to have to cope with in long-term care facilities.
You mentioned in your presentation the need for more staffing, but you didn't mention facilities. You didn't mention the bricks and mortar. How is the situation with respect to that? Is that also in need of a considerable increase? Where do we stand on that?
Ms. Chartier: Definitely it's actually one of the most important things we're trying to deal with right now. In Ontario there are approximately 23,000 people on the wait list to get into long-term care. The average length of time on the waiting list before placement is 83 days. There are 634 long-term care homes across the province. Almost 40 per cent of those are considered small rural homes. Sometimes they are the only home or the only health care partner in that community and usually the major employer.
We have 35,000 beds in our province. Almost half of the homes have to be redeveloped. These are older homes built in the seventies to care for a totally different resident than we're caring for today.
The biggest thing to picture is that these residents are living in four-bed wards. If you looked at the stats that I talked about today, where 62 per cent of our population is suffering from Alzheimer's or some form of dementia, 46 per cent of that population exhibits some form of aggressive behavior and half of those residents are living in four-bed wards. Odds are that two out of four residents are suffering from dementia and the quality of living is just not where it should be.
We are in the midst of a capital renewal program with the Ontario government. However, it's only going to work for some homes. It's going to work for larger homes, but we still need to come up with a small home strategy. Furthermore, we need to come up with a program that will morph and that will allow these homes to redevelop, especially in an urban area like Toronto, where the cost of land is through the roof. These current homes are landlocked. Where are these residents going to go? Where are we going to build these beds without leaving these local communities? It's a ticking time bomb, in essence.
Senator Eggleton: The lack of the physical facilities — that is, the beds — is the major problem behind the waitlist, but you also said there is a staff issue. Let me explore that a bit more. What kind of staffing do you need? I understand there are a lot of personal support workers. I'm not sure how many nurses or other types of staff people you need. Can you perhaps give us a better indication of that?
Ms. Chartier: About 80 per cent of the staffing is probably personal support workers. Ontario is the second from the bottom province when it comes to staffing across Canada. We do need more staffing. Care for our residents over the past five years has increased by about 22 to 24 per cent; however, staffing has remained stagnant. Every time we get a 2 per cent increase in our funding — which we greatly appreciate; don't get me wrong — it's just keeping us whole with the collective agreement.
I talked about scope of practice. We need to let our staff work to full scope of practice. We should let RPNs do what they have been trained to do. We have research showing that RNs and RPNs in long-term care are working to the exact same scope of practice.
One of the issues that we need to deal with is this 24-7 RN mandate, which I think needs to change. We need to have PSWs working to their full scope because they are the eyes and ears. They are the ones doing 80 per cent of the hands- on care.
Senator Eggleton: What kind of training do they go through? Is there a certification for PSWs?
Ms. Chartier: Yes. PSW training has come a long way. You have to have a certified program now. You cannot get into a long-term care home without that training. RPNs, registered practical nurses, have gone from a one-year program to a two-year program, very similar to the old registered nurse program; and the RNs are a four-year B.Sc.N. now. The education has increased.
Senator Eggleton: You think the levels of education, the certification that goes on, are quite adequate, you just need more — and you need more money to get more.
Ms. Chartier: We need more. We need to have the homes allow the flexibility to look at where they need that care approach. They need to determine what that care team looks like, especially with the infusion of nurse practitioners into long-term care.
Senator Eggleton: Let me ask one question of Ms. Hanvey. You talked about your Speak Up program, particularly people getting involved in advanced care planning. At what stage are you suggesting that this is needed? Are you waiting until people are in need of palliative care before that, or are you putting this out for the general population? Do you put a guide out? You said you put something on your website, but I wasn't quite clear what exactly it was. Is it a guide they can follow in advance care planning?
Ms. Hanvey: Absolutely. I'll answer the first question first. We want all Canadians to engage in advanced care planning. It's never too early until it's too late, as the saying goes, and we don't know what we're facing. When we originally started the campaign, we were really focusing on people 55-plus or people who already had a diagnosis of a chronic illness, but as we've had a few years in, we're moving that back so that healthy Canadians start engaging. Certainly if someone is diagnosed with a chronic illness, that is the latest start point that they should use.
We've developed a workbook for people and their families to use to work through the steps of advanced care planning. Our program runs under the guidance of a national steering committee that brings experts to our table. Under their guidance, and with the consultation across the country, we've developed the workbook. It's based on five steps: think about what's important to me; learn about my current health status and what's relevant; decide on my substitute decision maker; most importantly, have the conversation; and then record it if I want to.
So we have a workbook. We've brought copies for you today that you can take. There's also an online interactive version of this workbook. As the laws for identifying a substitute decision maker and around things such as personal directives are provincial, we've worked in partnership with a number of provinces and developed provincial versions of the Speak Up workbooks that go a bit deeper in terms of legality.
Senator Eggleton: People watching should go to the Canadian Hospice Palliative Care Association and they can get access to that?
Ms. Hanvey: Absolutely, yes.
Senator Stewart Olsen: Thank you for your presentations. They've opened up a lot of ideas and thoughts.
I'd like first to go to Ms. Chartier on the staffing issue, if you wouldn't mind. I realize what you're saying. I think there's a big legal freeze, especially in long-term care homes. They're afraid to do more creative staffing because they'll get sued, so you have to have all these regulations in place. I'm wondering if the provincial government shouldn't have a look at those and see if maybe they can do a bit more. For instance, volunteers in small communities like to come in and do things. That's not acceptable anymore because people are afraid that they'll be sued if the volunteer does the wrong thing. Have you looked not particularly at volunteers but certainly at personal care workers? Are we overregulating to the detriment of the patients in the care homes?
Ms. Chartier: Yes. We are the most heavily regulated sector in health care. We would love to be more innovative in staffing models. However, our Long-Term Care Homes Act prevents us from doing that in a lot of ways.
We have really innovative programs going on across every home. A lot of our homes come up with really innovative programs, and they try to do the most they can with such little scarce resources. You see a lot of that through the quality and innovation awards that we promote across our sector.
Honestly, I think it comes down to letting that frontline caregiver team, the personal support workers, deal with programs that work very well. I talked about Behavioural Supports Ontario. I grew up in long-term care and in my former role we had a supportive measures program where the staff would have a secrets book. If a PSW went into a resident's room and did something that that resident accepted in their stages of dementia and it added to their quality of life, they wrote it in that secrets book so that if a new PSW or RPN came in after they were off for two weeks, they could look at it and look at that history of how to approach the resident and what the wins are.
The staff in long-term care is very passionate about what they do. They come up with really creative ways of approaching care.
Senator Stewart Olsen: It's actually very helpful to hear that.
My next question, Ms. Hanvey, is with regard to the legal position on patients who are diagnosed with dementia. Once you're diagnosed with that label, legally what are your options? You go ahead, do all the work and everything; and then at end stage or whenever, when you're not making decisions anymore — for instance, I'm thinking of people who ask for do not resuscitate. You'll go into an emergency room and they'll just say, "I'm not following that.'' If you're diagnosed with dementia, is there not a case to be made that you can't really make those decisions anymore?
That's what worries me about the planning. I certainly understand going much younger, but I'm afraid that people are going to get caught up in this legal conundrum. What can we do about that?
Ms. Hanvey: First of all, health care providers always have to ask for consent for treatment or refusal for treatment; and if the person is capable of doing that, then they ask the person. The health care provider determines whether the person is capable, in the context of their illness and the specific treatment or intervention.
Senator Stewart Olsen: If I may, though, that's the rub. It's very difficult. Is there any help for care workers to be able to understand whether this person can or cannot make this decision?
Ms. Hanvey: Absolutely. In their training, health care providers, physicians and nurses are taught about consent and refusal of consent, and also about assessing capacity. Physicians are taught about assessing capacity.
It is very complicated, because people can have capacity to make decisions in some areas and not in others. I understand that it's very complicated. As much as the system can support health care professionals to do that job and take on that role, they do.
If the person is not capable, then the substitute decision maker makes the decisions. Again, health care providers are obligated under the law to turn to a substitute decision maker or a personal directive, if that's legal in their province, and it's not in every province. Again, if the substitute decision maker doesn't know what the wishes are, then that makes it very complicated. The health care provider then has to act in the best interests of the patient in the situation, but if they know the person's wishes and they know that they did or did not want certain things, it helps with the decision-making process.
I appreciate your point that I can do all the advance care planning in the world, but if I end up somewhere with something I didn't anticipate, what are people going to do? In fact, we're seeing from the research that's been unfolding in about the last five years that doing advance care planning and reflecting on values and wishes and having conversations about what-if scenarios helps the substitute decision maker — or me, if I'm still capable — to be what we call decisionally ready. I have moved along the continuum to the point of being more ready to make those decisions and make them in the best interests and wishes of my loved one that I'm representing. We are seeing evidence now that this is helpful and it does work for people making decisions.
Senator Stewart Olsen: Thank you. I'm not suggesting that it isn't. What I'm asking is whether there is some way we can try to assist in making sure that this happens.
Ms. Hanvey: There are good examples. For example, in the province of Alberta, they have a provincial-wide policy on advance care planning and goals of care, which is the conversation I would have. Let's say I'm close to the end of my life and I'm making decisions for my care right at that moment. They have a process to transfer that information to something they call a green sleeve. So things like a DNR and my other goals of care — Do I want comfort care? Do I want some medical interventions? Do I want all? — are transmitted across settings, or the goal is to transmit them across settings with the use of this green sleeve that has my goals of care on it. There are good models for transferring information so that people are more likely to get what they want.
Senator Seidman: Thank you both very much for your presentations this morning.
If I may start with you, Ms. Chartier, perhaps wearing your hat as the Canadian Alliance for Long Term Care. There's no question from what we hear in witness testimony, but also probably from all of us in our own personal lives, that we understand how overburdened the long-term care system is currently, to say nothing of how overburdened it will become in the future. You're quite right, I think, when you refer to caregiver burnout as the sort of primary mover to somebody's entry into a long-term care facility, or even onto a waiting list for a long-term care facility.
Without going into long details about number of facilities and beds and all those things, which we could probably find out, I would like to ask you a more overarching question. You said in your presentation that the Canadian Alliance has been advocating to the federal government for a national dementia strategy that provides a framework and guidelines to support provincial efforts. From your point of view, what would be the essential elements of such a national dementia strategy?
Ms. Chartier: Through the Canadian Alliance for Long Term Care, or CALTC, all the provinces get together every year. I talked about the survey we did, which was around the same time the Canadian Medical Association did their survey. The numbers were very similar across every province in Canada. That reinforced for all of the CEOs and teams on CALTC that the one thing we could agree on was that the highest priority in every province was the state of dementia and where it was going. There's not one province that comes out shining in this regard. However, we did identify that there are several best practices happening around dementia. Instead of recreating the wheel, I think it's very important for every province to identify that best practice.
In Ontario, we are doing a major dementia strategy where we've broken dementia down into the five stages of dementia — obviously, I sit at the advanced stage table — and looking at how it crosses over the whole continuum of health care, not just seniors and not just acute care and long-term care.
The dementia strategy is actually overarching the whole capacity planning strategy. We find in every province that if we don't act now, we're going to be in a lot of trouble, because 10 years from now it's going to get way too far ahead of being able to address the situation. That's been loud and clear in every province.
I hesitate, when you say "national dementia strategy,'' to create new tables and new approaches when there are so many good things happening right now, and each province knows what those are. It's a very coordinated approach, which we would highly support, and we already have a lot of those tools at our fingertips. I think we would be a strong voice and in a strong position to help that national strategy launch.
Senator Seidman: That's precisely my question. From your perspective, what would be the essential elements of such a national dementia strategy? You're advocating for one. If understand correctly, you're saying that there are currently best practices that can be shared across the provinces. Indeed, we've heard that they're not shared — that they do exist and today there isn't sharing of best practices across the provinces.
Ms. Chartier: There is sharing through CALTC, through Canadian Health, Alzheimer's Canada - a lot of different agencies. But we need to structure a federally supported program that each province can tap into, have a voice at, and to have that federal lead across Canada. Right now, each province is struggling with resources. We're maxed, and so we want to look at how federally we can come up with a program that is supported across Canada.
Senator Seidman: Thank you. Because I'll run out of time, I'll leave that for now and move to Ms. Hanvey.
I must say that I will try not to be controversial here and ask you a question that is jumping right out. Having sat on the joint parliamentary committee for medical assistance in dying, I listened to what you had to say about advance care planning and all the research that shows how important that is and how our current piece of legislation doesn't allow for that kind of advance care planning. It doesn't permit it. I'm going to leave that on the table, and you may or may not choose to respond it.
You talked in your closing remarks about a federal strategy for hospice palliative care would work towards ensuring universal access for all Canadians, including an integrated palliative approach to care across all settings. Indeed, we've talked a lot about that here. There are various levels of care. There is a continuum — retirement residences, assisted living, hospice, end-of-life care. To what extent is the palliative approach available? How much do you contribute to ensuring it's available in other settings, such as long-term care, assisted living, retirement residences, outside of the hospice or the hospital?
Ms. Hanvey: At this point, it's very patchy across the country. It depends where you live, whether you are urban or rural, what province you live in, what's integrated.
As in long-term care, we have some good best practices that were identified in The Way Forward initiative. They're found in the reports on our website of integrating a palliative approach to care in other settings. it is about integrating it into long-term care settings.
The majority of Canadians say they want to die at home, but the majority of Canadians do not die at home. There are many reasons for that. Some of those reasons might be ameliorated by a palliative approach to care.
We're also talking about integrating it into primary care. that's not a physical setting of care, but part of the strategy that would better equip primary care providers, family physicians, nurse practitioners, some specialists who provide primary care such as respirologists, cardiologists and that kind of thing, to have some of the basic palliative care skills and information so that they can provide a palliative approach to care to patients, for example, who will eventually die with dementia within primary care.
There will never be enough primary care specialists or hospices to serve every Canadian. Therefore, the palliative approach to care looks at increasing the skills and abilities of people at the primary care level.
We have some good leadership in long-term care and providing a palliative approach to care in long-term care. At Lakehead University, the Centre for Education and Research on Aging and Health has developed a toolkit that will help people integrate a palliative approach in long term care. Palliative Canada has developed a whole education program around palliative care in long-term care settings for care providers. We have some of the tools available to integrate palliative care more across the board. The numbers aren't firm, but it's estimated anywhere between 10 and 35 per cent of Canadians who need it access palliative care.
Senator Seidman: There are a lot of misunderstandings about palliative care. Could you please define for us what you mean by palliative care?
Ms. Hanvey: Palliative care is a holistic approach to care that recognizes all the needs of the individual. It recognizes their physical needs, emotional needs and spiritual needs. It provides management of their symptoms and pain and other kinds of approaches to comfort. It's a care approach that is provided across the disease trajectory, starting at the time of diagnosis and changing as the disease progresses to the end of life. Palliative is not associated with just end of life, the last weeks or months. As a matter of fact, if we don't provide a palliative approach to care until the last weeks or months, we run the risk of having people suffer needlessly.
Senator Merchant: In Canada, we celebrate that we are a nation of many cultures and many communities. I have grown up in one of those communities. I know a lot of people who say they do not want to become part of the system. When I hear you describing this, it is not something a lot of people would feel comfortable in. They don't want to turn over their parents, because we have different approaches on how to deal with people as they age. They have certain expectations of us as their children.
When you're making all these wonderful plans, how much time do you spend thinking about how different families and family approaches are going to be able to benefit from a national health care plan with dementia? What are you doing?
Sometimes when people get older, they revert to their first language. If they're home, they can speak to their children in their own language. When eating their food, the smells are reminiscent of another time and it's comforting to them. Yesterday we heard about somebody's parents who wanted to have their oriental carpets in the home where they went. People have connections that keep them calmer and bring them to an earlier stage in their life that is not so bewildering. Where are we going with people who think a little differently?
Ms. Chartier: That's exactly what we're dealing with in Ontario right now. We have very culture-specific, long-term care homes, and culture-specific programs with the development of health links. We have moved to a grassroots journey for caregivers, because not everybody in the community knows how to access care. Unless you're in health care, it's very difficult to access where to go. It's something that we've been trying to deal with as well as part of the broader health care sector.
I'm personally dealing with a father in the early stages of Alzheimer's. He doesn't qualify for home care because he's too high-functioning, but he doesn't want to be alone. That stark fear of being alone is enough for him to make bad decisions.
Until you experience something like this, you have blinders on. You have to put yourself in the position of not knowing how to navigate the health care system. Where do I go for that? That's what I think we have to focus on, because there are gaps. There are gaps in palliative care. There are gaps in home care. You can't just have one part of the sector be the solution. You can't just have acute, home care or long-term care.
What we need in our country and provinces is transitional care. You need to clearly define a pathway of identifying when you need care and how to get there and what supports you need. There has to be major investments in that transitional piece.
Our research shows the population of seniors will explode across Canada. We're looking at six different models of care. We call it long-term care plus. One of those models is is a cultural model. One is similar to the skilled nursing facilities in the States.
In Ontario, you have ALC patients sitting in hospitals at almost $500 a day. We could do the same post-acute care in a long-term care home for probably $300 a day.
There are so many opportunities for different models of care. We can't keep doing what we are doing now. We need to change our models to meet the changing needs of Canadians.
Senator Merchant: How do you deal with end-of-life planning with regard to different cultural aspect of Canadian life today?
Ms. Hanvey: The essence of advanced care planning starts with reflecting on values and what's important to me as a person within my culture, within my spirituality, within my illness and within my life. We really encourage people to start their conversations talking about the things that are important to them in their life now, the things that bring them peace and joy, that make them get up every day and that are essential to respect their way of life. Obviously, that conversation continues. If somebody gets ill, throughout the illness some of that might change.
Another thing is that we work with a lot of community organizations. We are a national organization so we can't be on the ground, but we have a lot of community partners that we work with and through. There's been a lot of work specifically with various cultural groups at the community level. People come forward and ask: What does advance care planning mean to me? What does end-of-life care planning mean in our community? They're helping to define that and then share it across the community.
We worked in partnership with Lakehead University and some First Nations communities to look at the whole concept of advance care planning for First Nations people. They actually rejected the Speak Up tagline we had created because it wasn't fitting in terms of their culture. They've developed some resources that speak to their culture and community members. This is essential and ongoing. This doesn't mean the same thing, obviously, to everybody; and it has to be an important component.
Ms. Chartier: We also created an advocacy website for the general community at BetterSeniorsCare.ca The general public can go there and educate themselves on the areas we are dealing with. They can click on a button and send a letter directly to their MPP or phone the MPP through the website. It really enhances community awareness of the care needs.
Senator Merchant: You talked about a program where you brought in dolls for people with dementia. Do you work with pets or animals? Is that helpful to people with dementia, or is that not something that you've tried?
Ms. Chartier: Actually, the majority of long-term care homes probably across Canada have pet therapy programs. It's amazing what pets can do for somebody living with dementia. Recently, about six different homes that are members of ours posted videos and pictures of baby ducks. We had a case of one resident with dementia who was very stagnant and not engaged in anything. The staff got her in a bathing suit and put her in the tub, and in her mind she was teaching the baby ducks to swim. When you see the face and the smile of this resident living with dementia who has that sense of purpose, it just warms your heart; and that's why we're there. Dogs, cats, birds, baby ducks, bunnies, fish, and you name it. The Eden alternative is basically living plants and pets and is all across our sector.
Senator Raine: This is a fascinating study. The fact that the Senate committee is studying dementia is important because it is also a way to communicate with people.
There are a couple of things I would like to clarify with Ms. Chartier first. You talked about a long-term care home. There are a lot of different kinds of institutions, seniors' residences, assisted living, full care homes, private and public. In general, does your association represent all kinds of private or public businesses that operate homes and other facilities for people with dementia?
Ms. Chartier: Yes. Our association is the largest for seniors in Ontario and Canada. We represent public, not-for- profit, municipal, charitable and for-profit homes. We represent the whole spectrum.
A lot of our members also have community care organizations where they deliver home-care services. They have retirement homes and some supportive housing. We get the whole spectrum. My colleague at the BC Care Providers Association represents that spectrum, whereas I oversee long-term care specifically. It's really good that our association represents the whole spectrum because it gives us a lot of analysis. It allows us to look at those care services across every setting and it's beneficial for determining what needs are being met and what we need more resources for.
Senator Raine: That is very important because there is association, obviously, that deals with just the private sector ones. They obviously have some other challenges, but they don't represent the full spectrum because not everybody can afford private care. It's important that your association is able to see the picture of all care facilities.
Ms. Chartier: We're the only province in Canada that has two associations. Actually, I represent the majority of the private. There is a not-for-profit association that is much smaller.
Everybody needs to understand that regardless of whether you're private or not-for-profit or municipal or charitable, you get the same funding dollars across the province. No home is getting more money from the government than another. The only difference is that charitable also has access to charitable dollars and municipal homes have access to money from the municipality.
Senator Raine: Private sector homes have access to paying customers.
Ms. Chartier: They all pay the same. The only way you can add revenue is if you have private or semi-private rooms. They're all the same price no matter the type of home. There are private memory care facilities that aren't publicly funded, but all of my membership are publicly funded and they're funded exactly the same.
The Chair: It's important for us to understand this. We were dealing with the retirement homes, which are different from the long-term care. They're different organizations.
Senator Raine: In the retirement home field now, many of them offer full long-term care or a campus of care. I want to make sure there is a connection somehow to those that are completely privately funded by people who can afford it. Are they receiving the same information and stuff as your organization provides?
Ms. Chartier: Long-term care homes in Ontario are all publicly funded exactly the same. Retirement homes are private. They're not a publicly funded entity. You will have quite a varying degree of costs and who they are geared to serve. Some retirement homes in my local community are $3,000 a month. There are some higher end units at $8,000 a month. On top of that, they have packages of care.
Yes, depending on your financial status, maybe you can live in a retirement home and have all of those care services, but for a large portion of our population, not everybody can afford that.
Senator Raine: I fully respect that. It is important that even if it is a small percentage of beds that are available for end-of-life dementia care, that the ones in the privately paid sector are considered part of the mix. I guess my interest would be that the regulations, services and stuff are at the same level no matter who is paying.
Ms. Chartier: Yes. The retirement homes in Ontario have just recently come under the Retirement Homes Regulatory Authority, so they have some legislation. It depends on who they want to serve across the province. In some retirement homes, people don't really want to see dementia clients. They're going to a retirement home to get rid of the responsibility of dealing with their own house. It really depends on what you're looking for and what that retirement home offers.
Senator Raine: I understand. When you talk about long-term care homes, you're talking about publicly funded long- term care.
Ms. Chartier: Nursing homes, yes.
Senator Raine: Senator Stewart Olsen mentioned over-regulating and the use of volunteers. I want to ask if you are familiar with a program in Ontario called HIGH FIVE, which is a training program developed through Parks and Recreation Ontario for training of leaders, some volunteer, some on small summer job contracts. This is a training program that has been very well developed to teach people how to deal appropriately with young children, what is the way to look after them, what to watch out for, and it combines things like first aid and also how to deal with children in a social setting for the best interests of the child.
I was thinking that if there were a program that trained volunteers in how to deal with dementia patients, the dos and don'ts, then maybe we could have the comfort in having volunteers with that special certification helping out. Because we are going to need more people, and I know there are people in the community that would like to help.
Ms. Chartier: In long-term care, under our act, we have specific processes you have to go through for volunteers. It's a very comprehensive program. Once a volunteer comes into the home, they actually go through a lot of the same training as staff. That has to be done annually, right down to background checks, you name it. There's a really comprehensive program for volunteers in long-term care homes that every home has to follow and does follow.
We have some homes that have upwards of 50 or 60 volunteers. It really depends where you are in the province. Obviously, if you're in a GTA home where you have a lot of close communities, you've got a larger pool. When you get into rural, small homes in Ontario, you try as much as you can to work with local churches. But there's a very comprehensive program for volunteers in long-term care homes.
Senator Raine: Is it working? For instance, if I went in and got certified as a long-term care facility volunteer and then if I moved to some other community with my certificate, could I work there?
Ms. Chartier: Definitely.
Senator Raine: You don't have to redo it every time?
Ms. Chartier: No. It's just annual training. So you benefit from the annual training right down to Behavior Supports Ontario, because the PSWs are largely the hands-on contact with the residents, and so are the volunteers. That's why the homes really look at equipping their volunteers with the skill set they need in order to make that resident's life to the utmost quality.
Senator Raine: Thank you very much.
Ms. Chartier: You're welcome.
The Chair: I think we have to be aware that regulations, provincial and federal, with regard to volunteers in these kinds of area are critical. It's a very vulnerable population, so the checks have to be very thorough and so on. We understand that. Thank you very much for the answers to Senator Greene's comments.
Ms. Chartier, with regard to the issue of polypharmacy, we are aware that this is an issue amongst seniors generally and that it can have an impact on their functional ability, leading to increased rates of falls, accidents and so on. Within the long-term care organization, I would guess that the vast majority of the people involved have some medication or another. In a given location, in a given facility, do all the prescriptions go through a common pharmacy or a common prescriber such that someone has a clear look at the total prescriptions for each individual at the time that a new request for prescription comes in?
Ms. Chartier: Yes. In long-term care, we have very concrete policies and procedures in place for medications. When a resident is admitted into a long-term care home, they go through a medication reconciliation program. Basically, it's your primary caregiver, your physician or nurse practitioner, your registered nurse or registered practical nurse and the pharmacist working together. You have a post-care conference a certain time after a resident is admitted. We actually have very comprehensive systems in place to identify, for example, whether they are on a Beers List medication. The Beers List is a list of medications, on behalf of Dr. Beers out of the States, that seniors should not take. A lot of organizations have that in place. You have a multi-care conference review where you sit down with the family, the resident and the whole multidisciplinary team and you determine what medications should they be on and what medications shouldn't they be on.
Then there's a whole bunch of other measures, so that if a medication isn't used within 30 days, it's an automatic stop and comes off the medication records. It is a very comprehensive medication reconciliation program that's looked at monthly and quarterly in every home.
The Chair: You're referring to your experience in Ontario, right?
Ms. Chartier: It's pretty similar across the long-term care homes in Canada. It's very concrete. Because of the regulation, you have to have those processes in place.
The Chair: Thank you very much. That was a very well-articulated response.
Ms. Chartier: We actually also have a diabetes best practice protocol that we just launched across Canada through CALTC, and we're presenting globally on it. It determines the risk of diabetes, which is so prevalent and on the rise, especially in our indigenous communities. It identifies if they are on the right diabetes medication. One of the biggest issues with diabetes is hypoglycemia and the falls and the injuries that happen because of that. So now we're sharing that across the country.
The Chair: Thank you very much.
I want to turn to a different issue. I want to follow up on Senator Seidman's questions around what a national strategy would look like, and you gave very clear answers to her questions. I'd like to be a little more specific on this. We are collecting all of the issues that have to be included in a national dementia strategy, and you contributed in your answers to that today, but a strategy only works when it's no longer strategy but is actually an implemented action plan, which means somebody, some organization, some structure, has to be in charge of delivering.
It's one thing to say, okay, we'll set up the idea of collecting best practices. All right, who does that? And then who takes that information and makes sure it is distributed appropriately across the country within a national strategy. Bureaucracy is not necessarily the best place for this to occur.
So based on the experience — you've given some very good answers to other questions that kind of touch on the edge of this — what sort of organization do you see? Is there an existing organization, or how would one be developed that would actually deliver a national dementia strategy?
Ms. Chartier: I think in a perfect world the health ministers all meet across —
The Chair: Yes.
Ms. Chartier: I think it's got to be a number one priority, especially with what we're dealing with across Canada. I would love to see a national advisory panel for dementia with every sector represented. So in Ontario, I'll be your long- term care, and you need home care and your key Canadian organizations that are dealing with dementia and Alzheimer's. You would want Alzheimer Canada there, and you would want the Canadian Foundation for Healthcare Improvement.
The Chair: I get the picture, the advice, and I understand that. We can work that out. But who do they advise to actually implement the advice that they're giving?
Ms. Chartier: It would have to go under the Ministry of Health. It would have to be a designated program, just like the Behavior Supports Ontario, but it's got to be a dedicated program that puts the resources in the right place.
One of the issues in Ontario with Behavior Supports Ontario is our regional authorities chose a model, and in some of the models the money went to them and they decided to do mobile outreach teams. Our analysis shows you had some long-term care homes waiting six to eight weeks when they had an episode with a resident. You can't wait that long. You need the care in the environment where it's going to get the biggest bang for your buck.
The Chair: We understand that. We have the advisory group, we can get all the information needed, and we can get it recommended to an authority, and with due respect, I do not think a collection of deputy ministers is the right body — they may be able to bring suggestions forward and so on — and I don't think that the federal minister is the right person to deal with this.
Ms. Chartier: I agree with you, and I didn't mean deputy ministers.
The Chair: Even the provincial health ministers.
There are existing organizations that have national range, such as the Alzheimer Society of Canada. I'm not suggesting that. It's got to be a federal strategy. The feds have got to agree to a national strategy, obviously, but the funding has to go into a body that can actually deliver the results and eliminate the kind of confusion that you just gave as an example.
I don't want to pursue this further here today because we could talk about this for the rest of the meeting. I'd like you both to leave with this question, and if you have a light-bulb moment, would you convey your thoughts through our clerk with regard to this specific aspect? We know about what we need to collect. We have no system anywhere in health care in the country to distribute best practices. We are, as we hear continuously at this committee, a country of pilot projects, and there's no interface, no distribution, and no recognition of what works and under what conditions and so on. We have to find a way, if we're going to recommend a national strategy, that it actually can be implemented and work. Please take that away and think about it.
I have one technical question for you: PHAC, the Public Health Agency of Canada, has a website. On that website, there is one button that's called "Best Practices.'' You click on that, and there's the drop-down list of categories of health in which best practices, presumably, are collected and available to look at. Dementia is not on that list. From your experience, is the PHAC website useful in terms of people going to and getting information in general such that they should have a "Dementia'' category in the drop-down list?
Ms. Chartier: Honestly, if you were to go out of the room and stand on the street and ask people if they knew what PHAC was, they would look at you with a blank stare.
The Chair: That's the answer I expected.
Ms. Chartier: Like I said, health care is very difficult to navigate, which is why we do betterseniorscare.ca. We actually wrote a report last year that we're releasing annually called This Is Long-Term Care, because people don't know what long-term care is. They actually think long-term care is free. People don't know that there's a co-pay. Our whole mission is to try to educate people and help them navigate health care.
The Chair: If you would implement a strategy, it would be providing that, and Canadian citizens, through an advertising campaign, would know where to go to get access to that. You have a great program, others have great programs, but they're not coming together yet.
Senator Eggleton: We've been talking a lot in these hearings about different entities and and different facilities and different kinds of services for seniors with dementia, from the early onset to the end-of-life situation. What about aging in place? What about continuum of care? I was thinking of this when Senator Merchant was asking you a question about people with different ethnocultural backgrounds, different languages and the things that they orient themselves to, quite aside from the fact that many families would prefer to keep people as long as they can in home care.
There are a number of facilities in my city that have an orientation towards the Italian community or the Portuguese community or the Greek community, et cetera. I'm not sure how many of them are just seniors' residences versus a kind of program that would be a continuum of care, that would take a person from the early stages of dementia or even before where independent living is quite possible, but staying in that same milieu, that same atmosphere, and working through different stages of assistance that is required right to the very end situation. Continuum of care, how much of that is being pursued?
Ms. Chartier: I had referred to long-term care plus. That's actually one of the models. If I had one Christmas wish, it would be to change legislation so that continuum of care could happen.
There are several communities that have the aging-in-place continuum, so you have condominiums and then you move into more assisted living. What happens is you live and thrive in that community, but when you need long-term care, you go to the bottom of a wait list, and you have a chance of going to four other homes and not your long-term care home in that community, which defeats the purpose of that community. That's going to require legislative change, and that's what we are advocating for.
Senator Eggleton: I would think that giving people the comfort and familiarity with language, culture, or whatever, would be a very important thing to advance.
Ms. Chartier: There are avenues in the act, if you take that specialization journey that we're promoting, if we tweak the act, the Long-term Care Act, in a couple of years, we could actually divert that wait-list and have that specialization, those long-term care plus models, a lot more accessible.
Senator Raine: You talked about co-pay and on long-term care in Ontario, and I believe it's the same everywhere. In British Columbia, where I'm from, the province subsidizes beds in private for-profit facilities as well as publicly built facilities. I was surprised to learn that they did that. They are seeing that the public sector can invest in retirement homes with a campus of care, including a wing that is locked and secure for dementia patients. In those wings, they have actually reserved some rooms for the use of the public system. I thought that was an interesting concept. I'm not sure if it's the same everywhere.
Ms. Chartier: Yes, there are anomalies in each province. In Ontario, the co-pay is the co-pay. Families have the opportunity to pay a little bit more and have a private room for their loved one. It's similar across Canada. Co-pay is pretty much the same model across Canada, depending on the type of setting. It depends. We have private and public, and they're all pretty much the same.
Senator Raine: In Ontario, if you have an income or assets, is there a clawback for the publicly funded spaces?
Ms. Chartier: Not so much. We do have a process in place where, if a resident can't pay the basic rate, there's a program called Exceptional Circumstances where the province kicks in support. There are quite a few residents in that program.
If you asked me would it be ideal for income testing going forward, I would say yes, I think it would be very ideal for our population moving forward. If people can afford to pay a little bit more, then it should be based on income testing.
Senator Merchant: I was going to ask if you have trouble staffing all these homes. Do you have enough workers? There was some talk about volunteers and how they could be helpful. Do you have difficulty staffing the homes? Do you have men and women that work in these homes, or is it primarily females? Sometimes men are a little stronger, and sometimes you need to handle patients that are maybe a little violent or need a little more physical strength to cope with them.
Ms. Chartier: We do have men and women working in long-term care. We probably more women than men, but definitely we have both.
You have a lot of issues with staffing depending on where you are in the province. I had referred to the 24-7 legislation, and that really has impacted a lot of homes across the province. Short of cloning an RN, you're not going to get one in rural Ontario, and you really don't want to use an agency because you want your own staff that knows the residents. That's why we're advocating, especially for small homes, to fix the legislation so that the 24-7 is flexible for those small rural homes — despite everything they do, they just can't get enough registered staff — and allow the registered practical nurses to work to their full scope.
In my former role, I worked for an organization that had 17 homes across the province, and we were really flexible with our staffing based on the level of care that was required. We built two brand new homes right here in Ottawa, and based on the floor and the needs of those residents, we put the staff where we thought they were needed. We need to have that flexibility in every home in the province, and we need to fix legislation to make it a more flexible, resident- centred staffing model.
The Chair: This has been enormously helpful. I would like you to think, if you would, about the question that I put to you about how to organize it, because nothing works unless there's a way to implement. There are all kinds of ideas as to what we need to do, but there has to be a very clear focus and mechanism for implementation and delivery. We would welcome your thoughts on that at any time. The sooner the better, but please give that some thought and get back to us through the clerk.
With that, I want to thank you for the way you've answered the questions here. You've helped to flesh out the spectrum of resources and facilities that are available to us. The two meetings this week have given us quite a good overview of the range of senior care covering the dementia aspect.
Thanks to my colleagues for the questions that they've put to the witnesses today, and with that I declare the meeting adjourned.
(The committee adjourned.)