Community has key role in palliative care
A recent Spectator report by Cardus, a Canadian think-tank agency (https://www.cardus.ca/) describes how our community members are served by our health-care system as they face death. Cardus completed case studies of the palliative care provided in Hamilton and Ottawa, showing similarities between these cities and providing important context for health-care system planning.
In both cities, the most common place of death is a hospital, despite statements by patients, families and health-care providers that alternate locations, such as home or hospice, might be preferred. Gaps between primary care, community care and specialized hospital care were recognized in providing seamless and co-ordinated services.
Additional context is available from Health Quality Ontario (HQO), which provides system-level metrics for all of Ontario and each of Ontario’s 14 Local Health Integration Networks (LHINs). The most recent HQO report in 2016 (http:// www.hqontario.ca/System-Performance/Specialized-Reports/Palliative-Care-Report) shows striking similarities in the metrics of the 14 LHINs.
Metrics from HQO for Ontario, Hamilton’s LHIN and Ottawa’s LHIN show that the percentages of patients who received home care in their last 30 days of life were 76 per cent, 76 per cent and 74 per cent, respectively. The percentages of patients who received one home visit from a family doctor in their last 30 days of life were 34 per cent, 33 per cent and 42 per cent. The percentages of patients who had at least one emergency department visit in their last 30 days of life — an undesirable occurrence — were 63 per cent, 59 per cent and 61 per cent. The percentages of patients who died in hospital were 65 per cent, 62 per cent and 58 per cent.
These data demonstrate how understanding home-care delivery, emergency department use and place of death can assist in improving our palliative-care systems. The metrics imply that as communities engage in discussions of palliative care, themes related to patient-centred care and
service integration will emerge as priorities. Four themes are of particular importance.
A first theme is to create expectations among patients, families and health-care providers that soon after a diagnosis of a life-limiting disease, patients will be able to discuss their thoughts, wishes and goals as they live and acknowledge the possibility of death. These discussions should be “part of,” rather than “instead of,” those involving treatment options for specific conditions such as cancer, heart disease or other life-limiting conditions. The discussions should be influenced by broad, holistic issues such as relationships, spirituality and culture, and recognize that patients’ perspectives will change over time, thus requiring regular, ongoing conversations.
A second theme is to ensure patients’ families and caregivers are included. While inclusion is important for many reasons, it is exemplified by the metric related to death in one’s home. Many patients indicate a desire to die at home, but studies have shown they place even greater importance on having relief of symptoms and to not be a physical or emotional burden on their family. There is a need to recognize the unique roles of family caregivers and to identify supports they require so that their care of loved ones is not compromised by fatigue and distress.
The third theme is to recognize that supporting patients and families requires co-ordinated teamwork by health-care providers across all settings. Consistency among core team members, and access to specialized care when appropriate, is fundamental to supporting patients and families. Patient and family needs will change over time and require that care teams be adaptable in providing ongoing seamless support.
A fourth theme prioritizes the role of the community in effectively implementing palliative approaches to care. Recognizing death as part of our natural life cycle has been described though the lens of the “compassionate community.”
This term is built on World Health Organization concepts of the 1980s for Healthy Cities/Healthy Communities, and speaks to roles for promoting health, including related to dying, that reside in our municipal agencies, schools, places of worship, workplaces and with the media.
The provision of compassionate and holistic palliative care to meet the needs of our community members and their families presents an extraordinary calling to our society and our health-care systems. As dying and death are more than a health-care issue, we should recognize the important roles for local communities and our broader society in placing perspective around our philosophies and approaches to care.
Dr. Ralph Meyer is the Hamilton Niagara Haldimand Brant (HNHB) regional vice-president for Cancer Care Ontario, vice-president for oncology and palliative care at Hamilton Health Sciences and professor in the Department of Oncology, McMaster University. Dr. Amy Montour is a palliative care physician with Brant Community Health Care, provides care of the elderly for the Six Nations of the Grand River Territory and is the Indigenous clinical lead for the HNHB Regional Cancer Program, regional co-lead for the HNHB Regional Palliative Care Network and Indigenous health consultant to the Department of Family Medicine, McMaster University.