“Let’s ensure that all live well and die well.” Physician Naheed Dosani gave his audience this challenge at a TEDx event in Stouffville, Ontario last year. Dosani is a Palliative Care and Family Physician at Inner City Health Associates in Toronto, Ontario; in this role, he and his team provide mobile palliative care services to patients who are homeless and face life-limiting diagnoses (Dosani argues that homelessness itself can be viewed as a life-limiting disease). He speaks of the inherent worth of each person: “Let’s ensure that everyone has a dignified death. It is often said that the best way to judge a society is by how it treats its most vulnerable.”
In a segment on CBC’s The National, Dosani assures a patient that, “Palliative care is not a place, it’s an approach. We’re trying to bring it to you, here, to try to give you the opportunity to feel as good as you can, given what is going on” (Jan. 21, 2017). The Evangelical Fellowship of Canada (EFC)’s resource Euthanasia and Palliative Care: A Guide for Canadians, published in 2016, defines a palliative approach to care as one that “focuses on meeting a person’s and family’s full range of needs – physical, psychosocial and spiritual – at all stages of a chronic progressive illness” (7).
Excellent palliative care is holistic, wherever it is offered: a person’s home, a long-term care home, a community-based hospice – or a city park. In the TEDx talk, Dosani shared the story of Archie, a man who had less than six months left to live. Providing care to Archie “required trust, human touch and relationship-centered care. As we got to know Archie, we realized that he loved nothing more than sunny days in the park while working on the daily crossword puzzle.” At Archie’s request, his palliative care workers gave medical checkups in the park; as such, “he could spend the time he had left doing the things that he loved.”
Archie’s story, though foreign to most Canadians’ lived experiences, has some common threads with what people hope for when considering their own death – that is, spending their last days on earth in a place that feels like home, with family or people who feel like family, and with a sense of dignity and respect.
The issue of access: Dying in place
The Canadian Society of Palliative Care Physicians reports that most Canadians would prefer to die at home, but approximately 70 percent die in a hospital setting instead (cited in Euthanasia and Palliative Care, 11). People may be forced into a hospital setting if they do not have access to palliative care such as home care, a hospice or a long-term care facility.
Konnie Peet, CEO of Shalom Manor in Grimsby, Ontario, notes that many long-term care facilities have been providing excellent palliative care for many years without it being widely recognized, and that this kind of care is a topic that is “coming to the fore more in Canadian society” in recent years. She laments the fact that “Canada as a whole cannot say that there is a system in place for people to die in place.” In her view, it should not be necessary for hospices to do so much community fundraising; rather, excellent end-of-life care should be provided through the medical system.
This conversation has begun on a national level. Julia Beazley, Director of Public Policy for the EFC, noted that there was some commitment from the Federal Government to increase support for home care, but this initiative is currently tied up in the federal and provincial discussions on health care funding. On May 30, 2016, MP Marilyn Gladu introduced “Bill C-277: an Act Providing for the Development of a Framework on Palliative Care in Canada.” On her website, Gladu notes that excellent palliative care improves quality of life: “Those that have access to quality palliative care choose to live as well as they can, for as long as they can.” The EFC has been supporting this effort to develop national strategy to improve access, because only 16 to 30 percent of Canadians who die currently have access to or receive palliative care (cited in Euthanasia and Palliative Care, 11).
Chapman House’s Executive Director accepts a cheque of donations from the community; (right) construction on the new hospice centre in progress.
‘A very good quality of life’
When considering the end of their own lives, many people fear pain, loneliness and a loss of dignity. Konnie Peet commented that people fear pain and fear being alone, and she affirmed that “neither is an insurmountable challenge.” A good palliative care team, including a physician trained in palliative care medicine, can minimize pain and alleviate suffering. Dr. James Rusthoven, now a Medical Officer for Health Canada, is an oncologist who for many years worked alongside palliative care units in the Local Health Integration Network (LHIN) in Brantford, Ontario. He stated that there are “benefits and pitfalls of different types of palliative care for different illnesses. As a medical oncologist, I spent my career working with cancer patients, in particular working at the interface between completing available anticancer therapies and helping patients with advanced cancer adjust to palliative care.” One such therapy available at the end of life is palliative sedation, which reduces consciousness to alleviate suffering. Rusthoven explains that palliative sedation is distinct from euthanasia, “both in terms of the ethical dimensions, intention of the actions and the anticipated outcomes.”
Social and emotional support also improve quality of life and alleviate suffering. Peet noted that no one is alone at Shalom Manor, as family members are welcome, and the staff are attentive: “We support people to have a very good quality of life.” She shared a story of a Personal Support Worker (PSW) who has worked at Shalom Manor for many years. She described her role as helping to prepare people, in the last days of their earthly life, “for life with God in a glorious heavenly home.”
Rev. Henk Bruinsma, a chaplain at Holland Christian Homes, concurs that, “We want to live to the fullest as many years as the Lord gives us.” Bruinsma said that in the past, perhaps a decade ago, there was a change in the way palliative care was perceived: “Before the change, there was a perception that palliative care meant a 180-degree turn away from restorative care.” In that paradigm, palliative care was something to be feared: “It was associated with giving up hope.” The current model brings palliative care and restorative care together.
Awareness and honesty
Wendy Tamming, who has volunteered at the Residential Hospice of Grey Bruce since it first began in 2013, affirmed that, when faced with the end of your life, “You have to believe it doesn’t mean the end of hope.” She advocates for open conversation about the end of life, making “the act of dying something that can be talked about and better understood.”
Rev. Bruinsma suggests that these conversations about death begin in childhood. He does not recommend forcing a conversation with children, but he advises that adults be open and “honest with children’s questions when death occurs,” creating the “awareness that we aren’t in this world forever.” Bruinsma noted that when adults give children straightforward, honest answers to questions about death rather than evasive ones, “it can reflect that we are quite at ease talking about the fact that we are all going to die someday.”
People may bring many mixed feelings to their last days; Wendy Tamming quoted Dylan Thomas’ poetry: “Do not go gentle into that good night, / Old age should burn and rave at close of day; / Rage, rage against the dying of the light.” Some people struggle against their own mortality in this way. While some people struggle against death with whatever means possible, others may feel ready to die, expressing the anguished sentiment, “Why doesn’t the Lord take me home?” Bruinsma referred to Job chapter 3, in which Job questions God, asking why people who may not want to be alive are given life. He offers empathy, allowing people to articulate and work through their feelings: “You don’t want to shut down the conversation.” Whatever feelings people may bring to their death, he says, “It is a real privilege as a Pastor-Chaplain to hear people’s conversations about their own approaching death. Going to be with the Lord is not the consolation prize for losers.”
Tamming concurs that supporting people as they prepare for death is both meaningful and rewarding. In her words, “Everyone has a story, a gem, an insight to share.” Being present to hear from the person and their family and friends “is another way of acknowledging and respecting and letting that person know that they are important and special right to the very end.” The Residential Hospice of Grey Bruce is not affiliated with a specific religious group, and it serves a “whole rainbow of people from different experiences and walks of life.”
Some people’s stays at the hospice are longer and some are shorter, but regardless of the length, Tamming notes that families are often “overwhelmed with relief” when their loved one enters the hospice. Hospice care provides help for the family, “releasing the family to not worry about the burden of giving care, but to focus on their loved one” while volunteers assist with practical matters, such as bathing, cleaning, meals and dishes, and the LHIN health-care team provides pain management and medical treatment.
Tamming says that, just as a woman in labour can be helped by the touch of “expert hands, guiding hands, loving hands” as her child is being born, people can also be helped by touch as they are passing away, and that death itself can be viewed as passing from one set of hands to another, “like those trust exercises. You let yourself go, and someone is going to catch you.” Being there with people in that moment “is a challenge and it’s a gift.”