We would like to highlight the potential benefits and challenges of our end-of-life policy that we can anticipate.

End-of-life Care Policy: Pros and Cons

Pros:
- Will finally ensure that quality health care is guaranteed for those at end-of-life.
- Resources will be reflective of health care needs.
- This is a proactive step in taking measures to prepare for the aging cohort. (averting later social crisis)
- This policy stands in line with the 5 pillars of the Canadian Health Care Act- and the ideals in which Canada strives to uphold.
- Checks are put in place to ensure care- by making this delivery visible for public scrutiny (taking it out of the private realm)
- Will reduce the need for respite (thereby freeing costs allocated to this service)
- Allow for the psychological well-being of care-givers and dying loved ones- by allowing them to dye with dignity.
- Freeing the voluntary and private sector to tend to other community needs.
- Community based care creates a connection between generations- by not isolating the elderly which is mutually beneficial – creating a more cohesive community.



Cons:
- By virtue of being the first policy to specifically focus on this issue- it will take a great deal of time and communication between levels of government, and service providers to shape a functional and effective policy.- flexibility is crucial but requires labor and time.
- Difficult to ensure open dialogue between various stakeholders in end of life health care – ie social workers, nurses, caregivers, physicians etc (may result in a hierarchical relation whereby certain opinions and agendas are valued more than others)- Also it maybe difficult to reach a consensus with so many contending perspectives.
- Funding must be increased to the health care services- streamed particularly to elderly needs (chronic care) this will be challenging as the tax revenue is decreasing, while a large portion of Canadian’s are retiring on pension: therefore to meet the health care demands of its citizens- drastic cuts will need to be made elsewhere.
- End of life care education: also will be a costly endeavor (to produce and widely distribute end-of-life care manuals)

DNR - What is it and who should know about it and why? Is this a Living Will?

Does a DNR order really mean DO NOT RESESCITATE ever, under any circumstances - or does it mean do not resescitate only under these specific conditions? Have these conditioins been documented in the DNR order? Does the family have a say? Does the family have a say even when the patient has been clear about their wishes and has a written directive? Who should be aware of this directive and who is obligated to honour it? Under what circumstances? Where does one keep a copy of this directive? These are just some of the many questions that arise when one speaks about an order to not attempt resescitation.

The same questions can be asked of the more specific directive of "no CPR". Does the patient really mean "no CPR" under any circumstances or is it intended to have a more limited meaning, e.g., no CPR only if recovery is remote or there is no chance of recovery? What about "No More Chemotherapy" requests? Are any of these different from the other? I would suggest that 'yes' they are very different.

Notice the change in language from the DNR directive to the "No More Treatment" request. As we move from the word 'directive' to the word 'request', there is an assumption of choice here. And, there is when the word 'request' is used. On the other hand, the use of the word 'directive' is purposeful in that a DNR directive is a request that a medical professional is legally obligated to honour - if they know about it that is. And here is the clincher for many people - "if they know about it."

The law is very 'fuzzy' in this area and I would suggest it is very 'fuzzy' with intention. Death is a difficult subject in our culture and no one wants to believe or acknowledge that someone could possibly wish to have an end to their life (I would argue, an appropriate, autonomous end in the case of DNR orders!). By allowing this 'loop-hole' to exist in the legistlation, it makes room for a desperate family to remain hopeful and it allows the 'miracle of modern medicine' one more opportunity to work. We have to remember that we live in a culture that believes, often against the odds and valid research to prove otherwise, that the right treatment can fix anything. We have lived within the bio-medical model of healthcare for so long, that it is imbedded in our belief system - cure is the only reasonable alternative! So where does that leave us with orders to DNR?

I posed some questions at the beginning of this blog - hopefully just to get us thinking about the difficulty behind making decisions like these and almost as importantly, around honouring these decisions. It has been suggested that a 'Living Will' is one of the best ways to protect your wishes surrounding EOL directives. A Living will is a document that one fills out and signs, which clearly lays out any specific directions a person might have regarding how EOL care and treatment are handled and delivered. It may include such things as: the use of extraordinary care; life-saving treatment options; life-preserving treatment options; specific treatment choices; where one would prefer to die; who one would prefer to be (or not be) with them; wishes around pastoral care; DNR orders; the list is endless really. Once this document is completed and signed, it is imperative that a discussion takes place between family members and other caregivers (in the event that this is being done during a time of illness), with the family doctor, other members of the healthcare team and of course, your lawyer. A copy of the document should be kept at home, with your lawyer and with your doctor, minimally, at whatever point in your life you choose to complete it. If it is completed during a time of terminal illness or life-threatening illness, it should be even more widely distributed in order to ensure that your directives are followed in the event of an emergency medical situation. It is not unheard of for a family to disregard their loved ones wishes simply by saying they did not know about the document or that they did not have access to it. Care must be taken by all involved to opening discuss the decision and its implications for not just the patient, but for those who will be left grieving their loss.

The above suggestons are merely that, suggestions. A Living Will or a directive to DNR are only as good as the people that know about them! Really.

At some time, in some way, we must all face the end-of-life. And most of us share a comomon hope that when death comes to us or to a loved one, it will be peaceful and free of pain. We hope to face death surrounded by those we love, feeling safe, comfortable and cared for.

Living Lessons (website)

More thoughts on policy . . .

Our last blog layed out the four key components of our suggested policy on end-of-life care. They are:

1. Universality
2. Care Coordination - a paid position
3. A broad range of basoc and advanced services
4. Assurance of EOL services, regardless of care setting.

Universality of care is understood as the provision of a full complement of social support and healthcare services to all persons who are faced with end of life, including those dying and their family.

Care Co-ordination

- will be discussed in a future blog, but it is understood that a necessary part of good palliative care is in the co-ordination of services. It is imperative that this role be fulfilled by an individual educated and skilled in the special demands and care considerations of palliative care. This must be a paid position.

Broad Range of Basic and Advanced Services - EOL is not focused on 'cure' but rather on comfort care. It requires a very broad range of services, including, but not limited to:

• good pain management
• spiritual care
• emotional care
• complementary and alternative care
• critical care (including extraordinary measures if requested at the time)
• financial aid
• information made available in a timely way, when needed
• home care equipment as needed
• bereavement services etc.

Care Setting simply refers to choice - the right to choose where one wants to receive the care required to die in a supportive, comfortable environment. This choice must include:

• the home
• hospice
• hospital
• long term care facility (which may indeed be home to many)

It is also important to note, that EOL may not take place in one setting only, but may rely on a variety of settings over a period of time. For instance, although the patient has chosen to die at home, the hospital may be necessary for short periods of time to stabilize a medical situation or correct a medication issue (or something other than that), with the full intention of moving the patient back to their home when all is manageable again. Or, a short time may be spent in respite care, allowing the primary caregiver to care for themselves momentarily. It is all about choice.

This all costs money. The final report of the Commission on the Future of Healthcare in Canada suggested $89.3 M be allocated to palliative care, annually to address these issues. We couldn't agree more.

More on resource allocation to come.

"Unfortunately, in end-of-life care, we do not have a vocal constituency: The dead are no longer here to speak, the dying often cannot speak, and the bereaved are often too overcome by their loss to speak." (Harvey Chochinov, 2000)

Who does speak for the dying and the bereaved? What does current policy say and who does it speak for?



As has been evidenced in previous posts, there is a lack of current policy, although there is no lack of desire to have it in place, right across the country. Currently, each province and territory have their own sets of "loosely crafted" policy and policy initiatives. It is our view that, as a country, we need a consistent, universal, accessable, affordable and compassionate approach to "end-of-life care" - one policy. It is also our view, that this is entirely possible. The senate sub-committee "Of Life and Death" (2000) agrees "the development of a pan-Canadian End-of-Life Care Network to further EOL care and program developments, including clear working practice guidelines and organizational components, such as mandatory accreditation, is needed as soon as possible in Canada to ensure a broad range of health care and social support services are available to all persons near the end of life and their significant family members or friends." (2004).



An organization called the Quality End of Life Care Coalition of Canada (QELCCC) representing some 31 different groups, all who focus on end-of-life care, states the same. They offer a host of statistics on their website and provide an invaluable cohesive approach. The information available allows us to determine just what a policy should include.

According to the senate sub-committee, there are four Key Components for an EOL Care Policy. We are in agreement. The Key Components are as follows:

1. Universality


2. Care Coordination - a paid position


3. A broad range of basic and advanced EOL services, and


4. An assurance of EOL services regardless of care setting.

To elaborate on these components we refer to their referencing in the paper "Integration of End of Life Care: A Health Canada Synthesis Research Project" (2004).

Universality refers to making available a full complement of EOL social support and healthcare services to all persons who are faced with end of life, including those dying and their families and or friends.

Care Coordination refers to the need to have these services made available and arranged through Care Co-ordinator who is specialized in EOL care, knowledge, skills etc. This should be a paid position in all cases.

A broad range of basic and advanced EOL services means exactly that - choice. Choice not just of what services a person desires, but where they desire to have the service provided (home, hospital, LTC, hospice), how the provision is carried out, whether it be basic or advanced. To key is to provide the care that is needed at the time it is needed - throughout the often lengthy process of dying. These services may include but certainly are not limited to, day support programs, respite care, financial aid to caregivers, availability of information 24/7, bereavement services for the bereaved, comfort care or extraordinary care measures to address deteriorating health conditions, sufficient home care provisions, equipment and medication, spiritual care and finally pain assessment and management in a timely, responsive manner. EOL pain management is unique to other times of pain management and this must be recognized and supported by the medical and pharmacological communities.

Care setting refers specifically to the fact that, as mentioned previously, 75% of Canadians say they would wish to die somewhere other than in an institution, and yet almost that many die in exactly that setting, institutionally. This disrespectful scenario needs to change to allow for choice.

Further posts will discuss DNR orders, Living Wills and Resource Allocation.

What does end of life look like?

I guess everyone, how close or distant a reality death is, can agree that given the choice they would opt to die at home surrounded by family while still having full physical and mental capabilities. This is the ideal depiction of death for most people. It wasn’t until today, when faced with the death of a close family friend that I pondered the different forms end of life takes. For this man in particular, it was in fact ideal. Being the ripe age of 93 he suffered a quick stroke and died in bed with his wife at his side. He still lived at home, drove a car, volunteered at the local elementary school, in every way was a contributor to the community and to his family. The night of his final departure he played snooker followed by mass- just to give you an idea of his independence. It can only be this conception of death that people filling out the questionnaires on end of life preferences had in mind. Juxtaposed to this image, is that of my Grandma, who for the last ten years has been significantly declining in mind and body. In her deterioration my mother felt the burden and after tremendous guilt of trying and being unable to tend to her needs. Dying can be ugly, it can be slow- and if in these circumstances most people would think twice about wishing family members take on the responsibilities of end of life care. A question framed in such an ambiguous way is guiding a certain answer. Where would you prefer to die? – few would answer amongst strangers in a hospital bed. But if asked how would you prefer to die?- few would answer slowly with a degenerative disease that requires a lot of money and labor to manage. Unfortunately we cannot dictate the form end of life will take for us, and as such we can not judge (preemptively) what form of care will be best suited to our condition at that time.

To institutionalize.. or not to institutionalize?

The following blog will take a closer look at the shift towards deinstitutionalization of seniors in Canadian policy. As has been noted earlier in our blogs... deinstitutionalization is a current strategy used by provincial governments in an effort to be cost effective with health care funds. Clearly this is an appealing approach for the government who will save tax dollars by eliminating expensive end of life care facilities. However, there is actual merit to this approach rooted in studies on the psychological effects of institutionalization on the elderly (which I doubt was the primary motivation of government- nevertheless.. they may unwittingly be on to something). These studies have revealed a marked decrease in life satisfaction and also in health status for those in institutionalized care. A recent study was conducted on the effects of institutionalization, which matched elders on variables such as health and age and randomly assigned them to three levels of service ranging from minimal , which included providing information and direction and maximal intensive programs, characterized by institutional care. It was found that the death rate (and disease rate) of the individuals in the maximal program was the highest suggesting, rather ironically, that the mere condition of maximum intensive institutionalized care may be detrimental to the health and psychological well-being of the elderly. Studies such as these suggest that policies surrounding end of life care should focus on the integration of the elderly within the community. Furthermore (as has been noted throughout our blogs) it has been well documented in surveys on end of life that seniors want to die in their homes. Therefore, policies should be in place, which allow communities to respond to the needs of their aging population. This means that services are provided by the state and are readily available WITHIN THE COMMUNITY. This would increase quality of life for the elderly by allowing them to be contributing members of society- giving them a sense of purpose, thereby harnessing the desire and motivation to live.

Women's work is never done...

As mentioned briefly in the previous blog, there is an unequal distribution of caring labor between genders. I would like to elaborate upon this and explain just what we mean when we make this statement.

Quite often the burden of care falls to women. Often, they must cope with an elderly parent who is dying while at the same time caring for young children. Add to the mix that many women are working full or part time and they are bound to experience incredible amounts of stress. Finally, in our mobile day and age, most families are spread out across the contintient and cannot provide assistance to care for the person who is dying

Women are far more likely than men to assume the role of unpaid caregiver in families and communities. As changes in the healthcare system have shifted the responsibility for care onto communities and families, it is unpaid caregivers - particularly women - who are providing care. In their role as unpaid caregivers, women are far more likely than men to take on intense activities of caregiving, such as providing assistance with personal care, cleaning, meals and such.

Women's health and well-being has been found to be negatively affected as a result of providing unpaid care. Furthermore, the economic security of women who are attempting to balance paid and unpaid work is threatened. "Caregiving work is made invisible both by the nature of the activities, which are usually performed inside the home, as well as by the fact that it is considered a "labour of love" or "women's work," which is both devalued and unpaid."

There is an absence of appropriate policy both at the provincial/territorial and national levels to alleviate the unnecessary financial, health, and social support challenges that are faced by unpaid caregivers.

How do you measure the value of a life?

Easily... cost benefit analysis...
End of life care decisions are often influenced by the political and economic atmosphere in which they are made. Canada is a capitalist country and as such values individualism and productive capacity of its citizens. Some scholars have taken a political economy perspective in theorizing on end of life policies in the West. It is no surprise that the political and economic agenda of the state is hidden under rhetoric proposing to support an individual’s right to autonomy in controlling the circumstances of their death this simply serves to justify the current ‘policy of inaction’. Political economists explores the interplay between ethics on end of life and the economic environment, which determine why some lives are believed to be worth saving and others are not. It is interesting to note that the advancements made on the front of medical technology have given rise to a unique phenomenon- in that our ability to save lives exceeds our resources (alloted to health care). This creates a dilemma in which lives must be assessed and subsequently prioritized. This very sentiment is expressed by Robin Dubos at a bioethics conference in the United States, who asked:

To what extent can we afford to prolong biological life in individuals who cannot derive either profit or pleasure from existence, and whose survival creates painful burdens for the community? (Epstien, 2007)

To quantify the benefit of medical intervention the measure of Quality adjusted life years was created. This is a tool that is used to weigh the cost and benefits of medical interventions. Essentially, lives are given a quantitative value, are prioritized and resources are distributed accordingly. This flies in the face of equitable and universal health care. Supporters of this method of resource allocation argue that because health resources are limited, this method ensures that resources are allocated in such a way that best benefits society. It is significant to point out that according to this perspective ‘society’s benefit’ is defined by economic return on lives. This approach to resource allocation serves to devalue the lives of elderly and does not ensure them the quality services. Taken to the extreme, it suggests that lives can be judged on a spectrum of age and ableism. QALY has been implicated to justify underfunding of resource-intensive services with low yield of Quality adjusted life years including intensive care, geriatric care and psychiatric care. These practices are highly discriminatory against the aged and chronically ill and disabled.

In the current situation there is a need for social action. The next few blogs will put forth end-of-life care policy recommendations to attempt to create a system that is more equitable. Currently, capitalist ideology pervades Canadian culture and is reflected in policy. However, it must be recognized that the plight of the elderly will eventually become everybody’s plight as we all age and/or will struggle to support aging loved ones. The unequal distribution of resources ensures that aging with dignity will be a luxury rather than a right. Furthermore, 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. It is deeply sinister that lives are appraised by their position within the capitalist system, although this sentiment is often hidden behind rhetoric of independence measures such as the QOYB make this sentiment more apparent. Elders who may otherwise be satisfied in their old age are constantly reminded that they are a burden on their family, community and society at large. If it is the case that there is a real scarcity in resources which cannot support end of life care for all Canadian citizens than this is a tragic state. However, if it is simply the unequal distribution of these resources that has created the current condition, which I am apt to believe, than Canada must reevaluate their current practices and place them in line with the ideals in which they purport to uphold. As Karen Bass famously wrote, “You judge a society by how it treats its most vulnerable citizens”
.... we invite you to read further to our policy recommendations and give us your input.

Historical Overview

A brief history of the social policies under focus in these blogs is necessary to understand the political underpinnings of these policies. We will start by giving a broad scope of the history of Canadian health care and how it has shaped more specific end-of-life policy. Much of the debate in the way of health care has sprung from the lack of a national approach to services. At the present time, health care and social services fall under the jurisdiction of the provincial government. The federal government is responsible for providing the necessary funding, however each province is able to determine where these resources are allocated. Subsequently this has led to a disjointed national approach to end-of-life care.

Each province and territory has established its own variety of services. Some provinces delegate partial responsibility for the administration of social and welfare services. The federal government in an agreement to share costs between provinces instated the federal Canada Assistance Plan, which ensured that social services funding was split on a 50-50 basis between the provinces. However, in 1990 the federal government imposed spending limits on the 3 richest provinces namely; Ontario, BC and Alberta. Subsequently, these provinces were forced to increase their sharing of social funding by up to 70%. Furthermore, cuts to social service funding resulted as the federal government has placed the reduction of the nation’s deficit on the forefront of the national agenda. In this way, Canada has been shifting to a more private health care as needed to deal with these severe budget cuts by all levels of government. One of the most important developments affecting social and welfare services is the general cutback in state expenditure on these services by federal and provincial governments. A number of strategies have been employed to compensate for lack of state intervention. These strategies include 1) deinstitutionalization: or the removal of people from institutions (however there should be prevention of the need for institutionalization. 2) Promoting Community Care- or emphasizing keeping the sick and elderly in their communities. 3) Transfer of responsibility from the public to the private sector (This is more pronounced in Alberta)

To address the gaps in provision of high-quality end-of-life care this group believes that a cohesive national approach to health care is necessary. Currently health insurance coverage for Canadians is financed by both provincial and federal governments. The provincial governments are responsible for designing and delivering health care but in a manner that abides by national standards that is codified in the federal Canada Health Act. In this way, health care services must be universal, accessible, publicly administrated and portable. Palliative care in hospitals is paid for by a provincial health plan, which generally covers professional care and drugs, medical supplies and equipment while the person remains in the hospital, so essentially it is designed to address acute illnesses and often overlooks the ailments of the elderly. This is a point of contention for many as 75% of all deaths in Canada occur in people over 65 years of age and 5% of these dying Canadians receive integrated and interdisciplinary palliative care. Furthermore, 1/4th of the total deaths in Canada are related to cancer; however they account for more than 90% of those receiving palliative care. These statistics indicate that the need for palliative care is concentrated for those over 65, however the actual delivery of these services is not reflecting this need.- which indicates an inherent problem in the system- if the services are not reaching the population that most urgently needs them.

As we work toward a national policy on end-of-life care . . .

As compassionate Canadians, we are faced with some disturbing issues with the provision of end-of-life care. As compassionate Canadians, we like to assume that our health care is provided in an equitable, accessable, and timely fashion. And as compassionate Canadians, we want to ensure that this happens - but it is not.

In 2004, the Pan Canadian Gold Standard on Palliative Home Care was issued. It was reporting on an exhaustive look at the literature available on how hospice palliative care was being provided within the borders of Canada. It asked for input from all 10 provinces, three territories and all levels of government. Most responded with valuable input. In the final analysis, what stood out most in this accord, was the lack of consistency in care across the country and the inequitable access to services. We will discuss access to services in this post.

Equitable and universal access to healthcare services is one of the five pillars of the Canada Health Act. We believe that end-of-life care falls under this same mandate, obviously. Unfortunately, research reveals this to be one more area where the rural/urban divide is evident. We can think of many reasons for this, but none that actually make it right or fair. As discussed in an earlier blog post, 75% of all canadians have stated that they wish to die at home if given the opportunity, but fewer that 30% manage to do so. (More than 70% die in some type of institution - LTC facility, hospital, etc.) We acknowledge that it takes a tremendous amount of co-ordination to provide services to make this choice available, but it is being done, particularly in urban settings. Although we do not have ready access to statistics on the disparity between rural and urban outcomes in this regard, there is a strong indication that far fewer rural citizens have access to adequate supports to allow them this 'right'. The geographical logistics may be a burden to providing services. To this end, much time is spent travelling between clients rather than providing care. Also due simply to geography, it may be more difficult to access consistent pharmaceutical care for pain management and because more rural residents are self-employed, fewer have access to drug plans etc. The cost of providing pain management at home can often send a patient to hospital prematurely. And finally, are their voices being heard? It is often more difficult to draw together the voices of a few, especially as they are spread across a vast space.

Some questions to ponder - Does it cost more money to offer home care rurally? Is there a lack of political will on the part of provincial and municipal governments? Are hospitals vying for funds that should be going to community services? Does the shortage of nurses affect the availability of services? Because many rural citizens are self-employed (farming etc.) are they made ineligible for financial support? There are many questions to be answered. Stay posted!

In an effort to elaborate on previous blog postings the following is a more in depth look at the National Action Planning Workshop on End-of-Life Care that was held in 2002.

Palliative end-of-life care within Canada addresses a number of aspects of end of life including:

• Pain and other symptom management
• Social, psychological, cultural, emotional, and spiritual support
• Caregiver support
• Bereavement support

Care can be offered through formal and informal care programs and its focus is on achieving comfort and respect for the person nearing death. Moreover, it seeks to maximize the quality of life for the patient, family and loved ones.

Now while, end of life care touches all parts of the health care system, Canada has yet to develop and implement policies around the issue. Currently, Health Canada is working towards the development of a national approach to palliative care through the Canadian Strategy on Palliative and End-of-Life Care. The goal of this initiative is to make integrated, accessible, and adequately funded palliative care accessible to all Canadians.

In March of 2002 Health Canada’s Secretariat on Palliative and End-of-Life Care held the National Action Planning Workshop on End-of-Life Care. The purpose of this workshop was to launch the development of a national action plan to ensure that all Canadians have access to quality end-of-life care. This workshop focused on the following seven areas:

1. - Availability and Access to Services
2. - Education for Healthcare Providers
3. - Ethical, Cultural and Spiritual Considerations
4. - Public Education and Awareness
5. - Research
6. - Support: Family, Caregiver and Significant Others
7. - Surveillance.

This workshop was the first step in launching the development of a national action plan. It is now up to the Health Canada Secretariat on Palliative and End-of-Life care and the project Steering Committee to work together to follow through on this report. Significant work has already been done in this area and we must now must use our political will to move forward and make important progress in quality palliative and end-of-life care.

Is Euthanasia part of end-of-life-care?

On Wednesday of this past week, the state of Washington cast their vote - not just for the future president of the US of A, but also to decide whether euthanasia, or more specifically, doctor assisted suicide, could fit into their vision of end-of-life care. From my point of view, the decision was heartening. They voted to legally allow this choice for those individuals suffering at the end of their lives. Washington state is the second American state to legally sanction this choice. They follow Oregon.

Here is Canada, the last real challenge to the illegality of doctor-assisted suicide was made by a courageous woman, Sue Rodriguez. Ms. Rodriguez was suffering from a debilitating illness, Amyotrophic Lateral Sclerosis (ALS) and wanted the right to decide when she personally had had enough. She was a resident of British Columbia and her case ended up in the BC Supreme Court. Her right was denied. This was more than a decade ago and nothing has changed since. Of course, it is unrealistic to suggest that very many people, at the end stages of life, have the energy or perhaps even the desire to continue this fight.

Hospice Palliative care does not support any kind of euthanasia. It is their position that with proper and adequate pain management and comfort/care supports available and in place for the individual and their families, it is an unnessecary choice. I acknowledge and respect their position.