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.