End of Life Care
As an increasing percentage of our population ages, Canadians are starting to think more about the role of hospice palliative care. Currently, more than 260,000 Canadians die each year, and by 2036, there will be an estimated 3.3 million Canadians older than 80 years of age.1 With these staggering statistics, it is our responsibility to ensure that all individuals have access to specialist hospice palliative care or a palliative approach to care in primary care, and that they die with dignity, free of pain, surrounded by their loved ones, and in the setting of their choice.
Although Canadians die in many settings, the availability of high quality end-of-life care in these situations varies widely. Currently, it is estimated that only 16-30% of Canadians have access to tertiary or specialist hospice palliative care.2 It is essential to understand the places in which Canadians are dying before we can improve hospice palliative care. These include:
Acute Care: Most Canadians are dying in acute care hospital settings3, many of which have limited hospice palliative care staff and resources. Too many people are spending their last months or weeks of life in emergency departments, which is an indicator of poor quality end-of-life care.4
Long Term Care (LTC): Although some LTC facilities, also referred to as nursing homes, are moving forward with hospice palliative care training for staff, many LTC patients also end up visiting the emergency room in the last weeks of life. Almost 50% of residents in LTC homes are dying in the facility each year, but there is still no formal palliative care for most of them, because this is not currently mandatory under Ontario’s Long-Term Homes Care Act.
At Home: Most Canadians would prefer to die at home, near their loved ones, but there is a lack of funding for home care programs and for trained volunteers and family caregivers.
Residential Hospice: Many Canadians see a residential hospice as an ideal setting, as the environment is similar to a home and the dedicated staff are well trained in end-of-life care. Many of these residential hospices offer bereavement counselling and respite care for families in need. Canadians living in remote and rural areas, and those living with disabilities, have severely limited access to formal residential hospices. Currently there are fewer than 75 residential hospices across Canada.
In Shelters/On the Street: While most Canadians will die in one of the above settings of care, there is a marginalized homeless population who die in shelters or on the streets, with little care. There are a small number of hospice programs for the homeless in Canada. These are units located in shelters that allow people to die in an environment where they feel at home. Shelter staff receive extensive training and provide round-the-clock care, supported by medical and nursing students who serve internships at the hospice.
Current end-of-life care research increasingly suggests that Canadians prefer to die at home or in their home communities (e.g., in local LTC facilities or hospices) instead of in a hospital setting.5 People near end-of-life should receive the care and support they need wherever they are in Canada and no matter their income. If they do need hospital care at some point, their transitions should be seamless. Through the development of a community-integrated model of hospice palliative care, we can work together to create caring communities that support people and their families to live well until the end of life.
The Canadian Hospice Palliative Care Association, under the guidance of the Quality End-of-life Care Coalition of Canada (QELCCC) has started work on the development of a framework for community-integrated hospice palliative care models. To learn more about this initiative or to get involved, please visit www.hpcintegration.ca.
Research also demonstrates that advance care planning (ACP) is associated with better quality of life for patients/families, increased satisfaction, and less stress at the end of life. Investing in ACP may be one of the most important things we can do to improve patient/family outcomes. About six in ten Canadians believe that it’s extremely important to talk to someone about their end-of-life care preferences – but a Harris/Decima poll indicates that only 45% have done so.6 Earlier research indicates that patients who have end-of-life conversations are much more likely to be satisfied with their care, will require fewer aggressive interventions at the end of life and place less of a strain on caregivers.7,8 Advance Care Planning in Canada, an initiative facilitated by the Canadian Hospice Palliative Care Association, acts as a knowledge user/broker in ACP. ACP in Canada, in partnership with health care providers, has created tools to facilitate their engaging with clients in ACP. To learn more about the project and to start the conversation about advance care planning please visit www.advancecareplanning.ca.
Editor’s Note: At the Gastrointestinal Society and the Canadian Society of Intestinal Research, we want to be certain that aging individuals and/or those with terminal illness who have gastrointestinal conditions are receiving appropriate care and we applaud the work of the Canadian Hospice Palliative Care Association in working toward improving palliative care models in Canada.