Sunday, October 26, 2008

Who is involved in the planning and provision of End-of-Life Care in Canada?

Current policy regarding this issue is disjointed and for the most part underdeveloped. However, the ground work has been done. As mentioned in earlier blog postings, the previous government of Canada initiated what was meant to become an inclusive, exhaustive piece of policy that would ensure the rights of Canadians to die with dignity and with respect of their wishes and those of their chosen family. The research and final report was overseen by the Honourable Sharon Carstairs, a member of the Senate and Chair of the senate sub-committee studying “Quality End-of-Life Care: The Right of Every Canadian”. The final report was taken to the senate in 2000. As an agent of the federal government, she was instrumental in the development of hospice palliative care, working with the provinces, territories and NGO’s to ensure the needs of those individuals and their families facing imminent death were met adequately. The Canadian Hospice Palliative Care Association (CHPCA) honoured Ms. Carstairs in 2003.

Following this report, Health Canada granted funding to the University of Alberta for a study entitled “Integration of End of Life Care: A Health Canada Synthesis Research Project”. The research was conducted from October 2002 to September 2003 with the final report being presented in March 2004. Clearly the federal government and its branches (Health Canada) had a determined interest in better managing end-of-life care. As well, many provinces took their own initiative to broaden the scope of end-of-life care – with British Columbia, in my estimation, leading the way. There is a role for governments of every level to be involved in the planning, supervision, funding and provision of services for this vulnerable population.

Provinces have a major function in that they are the ‘distributors’ of health care, in all areas – institutionally (hospitals, LTC facilities), in the community and at home (Homecare, Hospice, etc.). Some programs and services have been added in recent years (2004), such as “Compassionate Leave” for workers who need to take time away from work to care for a dying loved one. Unfortunately, as is the case in so many government programs, the criteria were so tight that very few people managed to acquire the funding needed to use the program. Somewhere in the neighbourhood of 90% of the amount tagged for the program, went unused in the first couple of years. This provincially funded program has recently been revamped, however, it is still not enough. In reality, it may take a lot longer than six weeks for a loved one to die – never mind the ensuing bereavement!
Municipalities also lend a hand in service provision and funding. As well, not-for-profit agencies, staffed predominately by volunteers, exist to fill the gaps. We know the gaps remain too wide when only 15% of dying people have access to hospice palliative care across this country. It is a travesty.

Saturday, October 25, 2008

Ideologically speaking, where does end-of-life care fit . . .



As has been mentioned in previous blog postings, end-of-life care is a very sensitive issue. Many people don't want to discuss it period - a taboo subject. The thing is, everyone among us will be touched by death in one way or another. This is one issue, that like it or not, will affect each of us in some way. It would be our feelings, as creators of this blogsite, that it be more of a positive, nurturing experience rather than the 'surprise' type of experience it is now. We will continue to discuss the issues surrounding death and dying here in Canada. Please join us in discussion.



The belief that everyone deserves the right to die with dignity is an honourable one indeed. Of course, 'dying with dignity' means different things to different people. A person who has reached the final days or weeks of life may want it simply to mean 'dying without pain' or 'dying in peace'. To the family members watching the death of a loved one, it may mean something different, like being able to die where one choses and with whom one choses to be with. It definitely means having the institutional supports in place to allow for choice. And yet, when asked in a survey, about 75% of respondants said they would prefer to die at home, while we know that 75% of deaths occur in an institutional setting. Something is not jiving with end-of-life care as it is being provided.



The more liberal view of end-of-life care respects this position of choice and the availability of state funded supports for both the dying and the caregivers. Only a few years ago, we were moving policy in a direction to provide for this choice. However, recent changes in our federal government - two years ago to the Conservative pary - and thus a change in government ideology to one with a neo-liberal view, this movement has stopped. Just as policy was being addressed and written to accommodate a more inclusive, nurturing end-of-life care continuum, it was halted and has yet to be addressed in the new government.

Sadly, we know though, is that a co-ordinated, well-orchestrated menu of choices for end-of-life care is not part of the agenda in Ottawa right now. Some of the most vulnerable citizens of this nation, those experiencing dying, die in a way that they don't chose. And those who must endure watching the death of their loved ones are often left with a more difficult bereavement, due to the circumstances of the dying experience.

It doesn't have to be so. Death with dignity, respect and choice is absolutely possible. As we move through this blog, we will look in depth at current policy (although there is nothing official) and make suggestions for improvement.

Wednesday, October 22, 2008



“My mother is living with us and she has age onset dementia. Her demands are growing as she becomes increasingly more frail. I have had to put several of my activities on hold at the expense of my health. The supports in the community do not allow the convenience of my activities as the services are rationed. I am still working as there is no financial incentive to look after an aging parent in your home. Charging them rent seems unforgivable! Burnout will be just another fact of life as our culture is NOT equipped/mentally prepared/financially responsible to take care of our aging population.”


“My Dad is 87 years old and lives with my Sister in Montreal, I live in Mississauga and visits as often as I can but I can only visit for one week at a time because of other committement. Yet I feel guilty that my sister will get burnout very fast. The Government encourages us to keep our aging parents at home for as long as it is possible yet there is nothing in place to help out example some financial assistance to be able to hire some one a few hours per day so the care giver can get some free time. Any advise on this issue would be gratefully appreciated. I believe that we should be lobbing the Govenment to put something in place to make sure that our senior years are not too stressed.”


“This problem is worse then you think. I am a personal care home operator in Saskatchewan, Canada who lives in a suite in the home. Because the economy is booming and seniors are on fixed incomes, I have great difficulty attracting and retaining staff. I have gone as long as six months with having even eight hours away from the pch. I have multiple illness and suffer from extreme exhaustion. I am unable to sell the business for what it is worth or for an amount near to what I've invested in it. The government will not step in and help pch opertors.”

The Burden of Caring

Women are faced with an array of social restraints throughout life and it is no surprise that these adversities should be reflected at end of life. The following blog will examine end- of- life- care policy using a feminist perspective. You may wonder why the policies on end of life care would concern you- well for one, we all age and will eventually face the problems that the elderly face with lack of support and services, and secondly there is no doubt that the Canada’s demographics is changing as the baby boomers are amidst retirement and soon after will be facing end of life. This in turn will tax the health care system tremendously and as demands for health services increase without the fiscal adjustments made to support an large aging cohort- one must wonder… who will pick up the slack?- well women of course!

Due to increased longevity of Canada’s population, the process of dying has been prolonged and has become a costly enterprise for the state. It can be assumed that individuals use more health services when close to death than at other times in their lives. Therefore to free up costs, the state has essentially relegated care of the elderly to the private domain. This is all well and good if these responsibilities were distributed equally among citizens, however, this is not the case. A study conducted in Britain reported that three times as many elderly live with daughters as opposed to sons. In addition, those elderly without a close female relative were more likely to be institutionalized regardless of the condition of their health. This can be extrapolated to the Western world where similar patterns of care-giving occur. Does this sound equitable?

Contemporary policies concerning end of life care are often reflective of the values of society at large. In Canada, no policies actually pertain to death directly, but those policies in the realm of health and social care influence the circumstances surrounding death and are beset with assumptions that serve to reinforce the patriarchal system. These policies and services often come in the form of respite, caregiver tax credits and lastly compassionate leave of absence from work. The very need for respite indicates a failure within the existing system. Respite in the form of in- home and out of home day care has been a well documented need of carers who request temporary relief from duties. If the labor of care was equally distributed between genders the conditions that make respite a necessary social service would not exist. Caregivers Tax credit is another avenue used to provide resources to the elderly that is secured with strict eligibility requirements and rarely exceeds 4,000$ annually. This amount grossly undervalues the work that is done in caring for the old. Also, this places resources in the hands of caregivers assuming that they will allocate them in the best interest of the elderly - which – although this is hoped- is not always reality.

Reinstated in literature on end of life is that the elderly “prefer to die at home”. This tends to overt attention from a pivotal point of controversy namely where the responsibility lies in ensuring that services are available and accessible. When left unchallenged this ‘policy of inaction’ bears grave consequences for women who are left to burden the needs of an aging population. In this current system women are disadvantaged three fold; first in that are primary caregivers and provide unpaid labor to support the elderly, secondly that women have greater longevity and are therefore more likely to be dependent on the state, and thirdly that higher proportions of women than men are employed in the social sector providing end of life services and therefore cuts made to this sector means loss of jobs for women. Cuts to publicly funded facilities shifts paid labor into private sphere of unpaid labor. This shift renders ethics of elderly care invisible and free from public scrutiny. It doesn’t allow for state reinforced standards of end of life for its citizens. It is deeply sinister and rests on faulty assumptions that family members will 1) accept the care-giving responsibilities of their elderly 2) equally distribute these responsibilities between genders, the family and the community and 3) will have the ability and resources to meet the needs of their aging loved ones.

In sum, dying has become a women’s issue as the state continually exonerates itself from the responsibilities of caring for the old. Canada needs to revamp the current approach to end-of-life care in a way that addresses the unequal distribution of caring labor between genders. Furthermore, the responsibility of regulating that elderly are treated ethically during this critical point in their lives is of utmost importance. What makes this matter more pressing is that the baby boomers are slowly approaching end of life. It has been noted that by 2026, one Canadian in five will have reached the age of 65. At the present time, Canada is ill-equipped to deal with the financial and social pressures that will surely accompany this shifting demographic.

Tuesday, October 14, 2008

In an effort to introduce to you the history of end-of-life care, as it has developed within Canada, and specifically Ontario, the following is a very brief summary of some of the highlights of the palliative care movement that has come into existence over the last 30 years. Historically, within Canada, end-of-life care developed within communities across the country to meet the needs of the people living within these particular communities. The hospice palliative care movement came about as a result of the rapid expansion of cancer treatment programs in the 1970s. By 1991 the Canadian Palliative Care Association (CPCA), now known as the Canadian Hospice Palliative Care Association (CHPCA), was formally established, and in 1995 the Senate of Canada published a report entitled Of Life and Death in an effort to address end-of-life care issues within Canada.
In June of 2006, the Senate updated this report and published the Quality End-of-Life Care: The Right of Every Canadian, with the goal of improving upon the plans and policies of the previous 1995 document. Then, in March 2001, Senator Carstairs was appointed as Minister with Special Responsibility for Palliative Care. This position is responsible for assisting the Health Minister in supporting the federal government’s interest in the development of palliative care by working with provinces, territories, and nongovernmental organizations to ensure that palliative care is meeting the needs of Canadian patients, families, and caregivers.
Now, even with all of these efforts in place, the province of Ontario has been characterized by a lack of coordination, organization, and consistency of end-of-life services. Historically, there has been a lack of integration between the multiple health sectors and palliative care service providers, unrelieved pain, inadequate symptom management, a lack of education and training in palliative care and a lack of health care professional capacity. The supports and services that are available within Ontario are hardly universal – availability is unique to each region and reflects the capacity and evolution of the health care system. Moreover, the system is difficult to navigate.
What are the consequences of this lack of integration? There are many and these consequences are felt hard by dying patients, their families and caregivers! To name a few, this lack of integration results in late referrals to care, unnecessary delays for treatment and symptom control, delays in transfers to appropriate settings of care and unnecessary suffering and cost. In addition to these issues, Ontario faces the challenges that come with adequately addressing the unique end-of-life care issues that face minorities, Aboriginals, those with mental health issues, and those who wish to choose their own time of death (euthanasia, assisted suicide). (To name a few!)
It is imperative that Ontario, and Canada as a whole, develop a plan to address these issues that affect so many people at such an important time in their lives! A first step in a positive direction came from the McGuinty government in 2004. This is the year in which the McGuinty government announced that they would be investing 115.5 million dollars over three years to improve end-of-life care services for 6000 more Ontarians, at home and in the community. This is most definitely a step in the right direction but there is even more that must be done. Hopefully these issues and possible solutions will become clear as we generate this blog!