Editor’s note: The following is an open letter to Prime Minister Justin Trudeau.
In June of 1995, the Special Senate Committee on Euthanasia and Assisted Suicide recommended governments make palliative care programs a top priority in the restructuring of the health care system. Senator Sharon Carstairs has lobbied tirelessly ever since to make evidence-based palliative care available to all Canadians.
Among many recommendations were the development and implementation of national guidelines and standards, the training of health care professionals in all aspects of palliative care and that there be an integrated approach to palliative care. Progress has been made on the first two recommendations but there is yet much to be done on integrating the service as you will see below.
In the words of the committee members, “The delivery of care, whether in the home, in hospices or in institutions, with the support of volunteers, must be coordinated to maximize effectiveness. The provision of respite services is an essential component and research into palliative care, especially pain control and symptom relief must be expanded and improved.”
On February 6, 2015, the Supreme Court of Canada decided unanimously that it is unconstitutional to prohibit physician-assisted death. Over the last two years, much has been said about end-of-life care and physician-assisted death being a “therapeutic service” for some Canadians, but critical elements have been lacking or clouding this discussion. In particular, little has been said about what palliative care is, and while a great deal has been said about death, little has been said about the life stage of dying.
Peer reviewed research unequivocally proves that a palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and a timely referral to the palliative care specialist/team will improve quality-of-life and quality-of-dying.
The World Health Organization’s definition of palliative care states that “palliative care is an approach that improves the quality of life for patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by the means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care also “affirms life and regards dying as a normal process” and “intends neither to hasten nor postpone death.” By definition, palliative care does not hasten death, but supports dying as a natural life process.
When faced with a life-threatening illness, all aspects of personhood are affected, and distress is often experienced across multiple interconnected domains—physical, psychosocial, existential, and spiritual. Palliative care seeks to identify and alleviate suffering across the trajectory of a life-threatening illness, including care at the end of life, and supports living well while dying. To those ends, palliative care must address all aspects of personhood and provide holistic person-centred care through an integrated inter-professional team approach.
Dying is hard work for everyone involved—the patient, the family, and care providers. It is innately an existential matter and asks us what life is all about. Dying is a normal process and a final growth stage of life. Like birth, it is an important developmental stage in the lives of humans, but unlike birth, it is one that we seldom talk about as a society. Those of us privileged to work with and to journey alongside the dying and their families will tell you that dying can be transformative, relationships can be healed and past hurts reconciled. Dying is often a time of spiritual growth and creation of a legacy for loved ones.
I have been a physician for 35 years. The last three years I have been attempting to provide comprehensive palliative care in rural Nova Scotia. To say this has been a challenge would be an understatement. It was believed that when your government passed the legislation enabling physician assisted death, more resources would be directed towards the support of palliative care. In rural Canada, comprehensive palliative care is difficult to access for many of the same reasons that primary care is difficult to access and so the default position may be a premature desire to access physician death because palliative care is not available – the very point the Supreme Court cited as a reason for supporting physician assisted death as a basic right. The majority of Canadians want to have comfort at the end-of-life. They want non-hospital care. They want to be at home when they die. In Canada our focus in health care is aggressive, acute care and that option (staying at home) doesn’t happen for a lot of people. According to Statistics Canada, approximately 70 per cent of Canadians will die in a hospital and of those who do, 10 to 15 per cent will be admitted to an ICU. This is unacceptable on so many levels.
Richmond County, Nova Scotia has an inverted population pyramid which is growing. More than 50 per cent of the residents are over 55 making it the second oldest demographic in Canada. In addition we have a high prevalence of diabetes and a genetic pre-disposition to renal disease (Acadian culture) and chronic multi-system disease. We have many needs, not the least of which is comprehensive health care delivery. As a result of poorly coordinated palliative care, we have the highest number of residents dying in hospital, instead of at home, in the province.
Although we have the resources locally to build a comprehensive evidence-based palliative care team, provincial authorities have advised that there is no funding for anything but the status quo: no nursing coverage after 4 p.m. including weekends, no dedicated nursing resources other than a coordinator, an itinerant palliative care physician who lives 80 kilometres from residents in need, no dedicated on-call service, few resources dedicated to respite care and certainly none after 4 p.m., and limited home care support. The burden of caring for someone dying at home is enormous on families and their loved ones. People are suffering unnecessarily and deserve better.
Your government has been generous in providing new funding for Home Care and Mental Health. No one should criticize that effort as the need is enormous in both areas. I fear that palliative care has fallen off your radar and may get caught up in the funding squeeze that faces provincial governments. Palliative care is a difficult topic by any measure. First, those that need it are so pre-occupied with living, they do not have the physical or mental resources to articulate their desires, needs and wants. Second, palliative care has been poorly taught in medical and nursing schools and so wide knowledge gaps exists among the professional groups charged with providing the service. Third, the specialty remains poorly organized as a discipline and as such does not articulate its value well and finally, the more rural your location as a palliative patient, the fewer options available to you. It is no wonder palliative patients have little energy to take on an advocacy role.
As a former national health care consultant, I have grave concerns about the ability of provincial health planners to dedicate the necessary resources to address the challenges that face rural palliative care. Like most health organizations, the focus is on a one size fits all solution that will focus on quick wins – usually found in urban jurisdictions. Moreover, the rise of hospice units (again in urban areas) will result in fewer dollars available for rural-based programs in a cash-strapped health economy. It is not clear to me that anyone is championing rural palliative care and so rural Canadians will have to content themselves with a watered-down version of what palliative care could be.
My hope is that you will use your considerable political and personal appeal to change the discussion and bring a renewed focus on palliative care especially for rural Canada.
Dr. Robert F. Martel