Let's recognize that community and the health care system are both important at end-of-life
My daring idea for health care in Alberta
April 10, 2017
Contributed by: Eric A. Wasylenko, MD, CCFP (PC), BSc, MHSc (Bioethics)
Palliative end-of-life care programs are maturing in Canada, still with somewhat spotty application of resources and expertise. Programs in Alberta continue to be among the leaders, some with a 20-year history of cross-sectoral integration, hospice development, home care capacity, acute and long-term care expertise.
Recent efforts in Alberta to incorporate "assessmentand treatment in place" with unique paramedic partnerships do a better job of keeping people in their homes, if that is their desire. Province-wide 24/7 telephone connection with specialists better supports community physicians in caring for their palliative patients. Terrific partnerships with disease specialty groups and our education institutions have embedded strong palliative care capacity within many chronic disease environments such as renal, heart failure and neurodegenerative disease programs. Our advance care planning initiatives, bereavement programs and community organizations that support children and families through loss help buttress palliative end-of-life care. Specialized pediatric palliative care facilities and programs are now well established.
It’s not only about the health care system.
It’s also about the community.
Many smaller communities have programs that strive to meet local needs. The Foothills Country Hospice (countryhospice.org) in Okotoks has had unique success in the rural environment, as has the work of the Olds and District Hospice Society (oldshospice.com). Many other community groups and numerous church or philanthropically sponsored groups, supported by physicians and colleagues, are working in similar ways. Dr. Douglas Armstrong’s work with the Pilgrims Hospice team in Edmonton and Dr. Simon Colgan’s ground-breaking efforts for street-involved persons needing palliative end-of-life care (CAMPP – Calgary’s Allied Mobile Palliative Program) are two good examples.
It is long past the time that we should consider the formal health system as being able to meet all end-of-life needs. The capacity and funds just aren’t enough, despite valiant efforts and commitments. Rather, our society ought to embrace the notion of citizens and communities caring for each other, supported by what formal agencies can provide. We are only two-and-one-half generations removed from a time when people were born and died at home surrounded by the skills and connection of family. I’m not suggesting we should return to that. But neither should we depend on “the system” to do it all. When we over-medicalize this important time of life, it becomes easy to forget several critically important things about the journey toward death.
First, rather than a time of waiting to die, it is an important time of living, growth and transitioning – both for the person dying and for those in their circle who will remain living. This time of the approach of death is full of potential for dignity-enhancing life.
Second, remembering that human existence is fundamentally a relational thing, the opportunities for growth, understanding and service that exist as we care for each other should not be discounted. I always marvel at the transformation in family members from fear of death to healthy acceptance of one’s own potential mortality, after they have been deeply immersed in cooperative caring for family members at home or in a hospice, together with expert teams. Third, the rituals of dying, of completing the arc of life, of making way for the next generation, of valuing a degree of loving dependence on others, all need to be better incorporated into the education system and into our community life.
Perhaps moving in these directions will help us get away from the death-fearing focus of our society, which is also understandably and perhaps unintentionally well-entrenched in our health care system.
I really value the work of my colleagues and our organizations in doing what they can to improve the skills, resources and capacity for our formal end-of-life care programs. In conjunction, some areas might deserve some special focus, spurred either from the formal system, or even better, from communities themselves.
Family and cultural end-of-life practices
One example is support for social circle groups who spring into action to assist people remaining at home or who support family members who require assistance for facility visits. Such groups – and I have seen this in wonderful action – help people meet activity of daily living needs as part of a community effort of caring for neighbors. Instead of re-creating this organic infrastructure each time, perhaps philanthropic or system grants could produce simple how-to guides, informed by community groups who have become experienced in this voluntary work.
Additional focus increasingly should be on gaining broader understanding of the norms of end-of-life practices in our culturally diverse populations. We must be more sensitive to those norms and needs, and we can learn so much about living and dying by experiencing how people throughout the world, including our Indigenous peoples, view dying, rituals, legacy and inter-generational existence.
Exciting programs are underway that, if successful, can be scaled up to support community and family connection. Specific examples include the technologically advanced Aging-in-Place Laneway Housing project underway in Calgary that is designed to keep frail elders safe and in close living proximity to their family, while maintaining some degree of independence. Another is the Butterfly model of living for those with dementia (dementiacarematters.com) that could be adapted for rural environments.
While many people work, thankfully, very hard, to advocate for more funding for palliative end-of-life care programs and continue to develop that capacity, hopefully we will remember that dying is a fundamental aspect of community human existence. As such, let’s remember to include community members and organizations as necessary participants in caring service.