By Jane Teasdale
The periods around the end of life and death are integral to our social connectedness, well-being and sense of self, personal inner growth and meaning. Today, we are increasingly being asked to bring death into our homes, hearts, relationships and wider communities.
End-of-life care impacts not only the person receiving the care, but also their families, social networks and communities. It is a humanistic, big-system issue that is worthy of being embraced fully and completely. A person’s experience of the end of their life can be adversely impacted by loneliness, social isolation, clinical distance and a resource-constrained health care system. On the positive side we have the humanity of others, our cumulative need for meaning and its expression, and the vast social capital that lies underutilized in our communities.
The Canadian initiative to educate people about end-of-life planning is called the Speak Up Campaign and is overseen by a national advance care planning task group that was set up in 2008. The year 2013 marked the start of a five-year plan that aimed to encourage people to commit to end-of-life or advance care planning1.
There is limited information on advance care planning in Canada2. An online poll in 2012 found that only nine per cent of Canadians had spoken to a health care provider about end-of-life planning, although 49 per cent had spoken to their family and friends3. Just what constituted this planning is not known. With limited contact with health care providers, it would certainly skip many of the issues that advance care planning usually considers.
According to the US Conversation Project, “the depression experienced by caretakers and family members after a loved one has passed is diminished if they’ve had the conversation in advance of the death4.” Talking about end-of-life issues and end-of-life planning makes people less, not more, anxious, according
to the project’s 2018 national survey.
Barriers within the health care system
A 2018 report from the UK’s Royal College of Surgeons stated that “only 8% of people with cancer who said they had thoughts and feelings about their death shared these with their healthcare team5.” Many who had not shared their feelings felt uncomfortable talking about them, while others related not wanting to bother anyone. Yet, the report stated that “people wanted repeated opportunities to consider whether to engage in honest conversations about their future.” Anecdotally, the report found that patients will choose with whom and when they are happy to talk.
Another study noted that: “Conversations were often conducted by physicians who did not know the patient, did not routinely address patients’ nonmedical goals, and often failed to provide patients with sufficient information about prognosis to allow appropriate decisions6.” Compounding this was the complexity of addressing existential issues with people who were unprepared for end-of-life discussions, and physicians who were both reluctant to and uncomfortable with initiating such conversations.
Physicians were also found to be reluctant to meet the need of older individuals for social contact, and expressed a fear and inability to talk about life, death, meaning and guilt. Academic research has noted limited attention to existential loneliness, in particular with respect to the potential for inner growth. The health care system, it seems, is unduly focused on illness and disease, omitting vast areas of a person’s meaning and being.
Care planning processes
Clearly, if you want medical care at the end of life to meet your wishes then it is best to address any issues that may arise in the present—and not wait until they are actually happening. The advance care planning process has been documented from a number of perspectives, some of which are overly clinical, while others are more relaxed and personable.
Toward the relaxed, personable side of the spectrum is the Conversation Starter Kit from the US Conversation Project7. It notes that 92 per cent of people say talking about end-of-life issues with their loves ones is important, and 53 per cent would be relieved if a loved one started the conversation.
The Conversation Starter Kit provides suggestions as to how to begin: For example, by having a practise conversation with a friend, or explaining that this is an ongoing conversation. Areas covered in the document include:
•How much of the “condition” and treatment you would be comfortable knowing about.
•Whether you would want to be involved in every decision or leave it to the clinicians.
•Whether you would want to be told how much time you have left.
•The extent to which you would want treatments to be continued, irrespective of the impact on your quality of life.
•Whether you would prefer to die at home, or if you would not mind spending your last days in a health care facility.
Other issues are also addressed, including how involved you would want your loved ones to be in decision-making, privacy at the time of death and how much information you would want to give your loved ones. Many of these issues do, however, require some knowledge and experience of end of life and death to fully appreciate.
Resources from the Canadian Speak Up Campaign can be found at advancecareplanning.ca8. These are much more formal online tools that take some time to complete, and many people
will need assistance with them. Opening with an easier and simpler conversation would be the better choice for most people. Once an understanding of the main issues has been gained then it would make sense to have further discussion with a health care professional.
From the clinical perspective, the emphasis within advance care planning and discussions around serious illness is much more on the substitute decision-makers, the prognosis of the person and clarifying wishes with respect to medical treatment 9,10. There appears little room for the wider holistic embrace that the person-centred care movement, in particular, is asking us
The main benefit of advance care planning for the person and the family is that decisions you might be faced with are likely to have already been discussed, lessening the angst of addressing them in emotionally charged circumstances. Undesired medical procedures are also more likely to be taken out of the picture. That said, many of the medical decisions may be complex and will likely be determined by an interaction between the clinician, affected individual and decision-maker at the time.
A holistic view
Allan Kellehear, in his book The Inner Life of the Dying Person, says that studies of the human dying experience “reveal deeper and novel experiences in personal direction, positive purpose and social intimacy…You will still need to love and be loved by others who are important to you, to contribute to society in your own way, to leave a unique positive legacy, to embrace dignity or kindness in all you do…” Kellehear asks us to “reach for a new, more holistic portrait” of the dying person.
As it is, advance care planning is often too narrowly focused on the clinical aspects of the process, with little guidance on the many other necessary conversations and supports that families need to address the full social and emotional journey ahead. It is an incomplete process. The answer is for greater openness to meaningful conversations about all our lives and values, and all things—whether small or big, past or present.
While honest conversations with respect to prognosis and treatment are undoubtedly protective and important, the clinical process would benefit from widening its scope to include greater sensitivity to the non-clinical, psychosocial needs of individuals. The planning and supports for those at the end of life need to widen out to include supportive social networks, community interactions and, where needed, social care interventions.
Advance care planning, as it currently stands, is an important cog in facilitating meaningful end-of-life care, but it is incomplete. There is insufficient support for family caregivers, and the dying remain at risk of becoming socially isolated, depressed and financially distressed.
But lack of planning is not the only factor affecting meaningful end-of-life care. At present, there are insufficient resources to provide palliative care for all who might need it: Only 15 per cent
of Canadians receive palliative home care in their last month of life11. There is concern that “dying is not seen as part of living”12 by the health care system.
Our approach to the end of life needs to move beyond the clinical to incorporate the wider holistic needs of individuals, their social connectedness and their communities. The end of life and death are moments of tremendous importance, personal growth and meaning, both to those leaving and those who remain.
Jane Teasdale is the business development director and principal of Mosaic Home Care & Community Resource Centres. mosaichomecare.com.
References available upon request.
Compassionate Communities Model
In a 2016 paper, Julian Abel and Allan Kellehear discuss the resource constraints of the health care system and a general failure of the UK’s National End-of-Life Care Strategy to address end-of-life issues13.
The UK’s initiative was set up around the same time as Canada’s. In the paper, Abel and Kellehear propose a “Compassionate Cities” model—a holistic model of wider community support that extends beyond the health care system. The Canadian equivalent is the Compassionate Communities model. Mosaic Home Care is set to be one of the founding signees of the Markham community in the Greater Toronto Area.
Check out compassionateottawa.ca to review a program in action.