End of Life Care
SnapshotThe Canadian Association of Occupational Therapists (CAOT) believes people of all ages have the right to quality care at the end of life. Quality care allows people to achieve a fulfilled life despite the onset of illness, disability or other barrier to good health, to die as free of pain and other symptoms as possible, and to choose from the range of service providers available in Canada. Everyone in Canada should have equitable access to these options, regardless of geographical location, socioeconomic status, or other characteristics.
According to Census data, 269,012 Canadians died in 2015/2016, with each death estimated to affect the well being of an average of five other people. (CAOT Fact sheet)
Between 62% and 89% of those who die could benefit from palliative care-including nearly everyone who does not die unexpectedly (Canadian Institute for Health Information. Access to Palliative Care in Canada. Ottawa, ON: CIHI; 2018.) 75% of deaths take place in acute care hospitals and long-term care facilities, despite the majority preferring to die in their homes surrounded by loved ones. Access to quality care also varies significantly across Canada with remote regions and Canada’s North particularly undeserved. As Canada’s demographics shift towards an aging population, more resources are needed to scale- up equitable access for all Canadians.
Through Budget 2017, the Government of Canada committed targeted funding of $6 billion over 10 years to provinces and territories to improve access to home care services, including palliative care. Recent legislation ‘An Act to develop a framework on a palliative approach to care’ and the appointment of a federal Minister for Seniors further recognizes the need for more dedicated action on home and palliative care in Canada.
Occupational therapists (OTs) are well placed to provide end-of-life services as part of a team of primary care health professionals, and to contribute to a palliative approach to care throughout the illness trajectory, which focuses on a person or family’s full range of needs-physical, psychosocial and spiritual-at all stages of a chronic progressive illness. OTs promote options for clients that enable control, meaning and participation as far as is possible throughout an individual’s dying process. OTs focus on client-centred approaches and address the full spectrum of holistic care.
End-of-life care aims to relieve distress that is often associated with death and improves the quality of life for both those diagnosed with an advanced or terminal illness and their loved ones. It is appropriate for individuals of any age and/or their families, who are living with or at risk of developing a life-threatening illness.
OTs play an important role in supporting clients, their loved ones and caregivers in maintaining and fostering a sense of cohesion, participation, and living, even in the midst of dying. During life’s final phase, occupational therapy- led approaches involve reframing and tailoring interventions to adapt to the client’s changing goals and abilities, while addressing the client’s physical, social, emotional and spiritual needs. Through a palliative approach to care, OTs contribute to a quality end-of life experience.
What is palliative care?
|The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, though the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patient’s illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement
counselling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to
prolong life, and includes those investigations needed to better understand and manage distressing clinical complications.
- CAOT participated in consultations on a palliative approach to care framework with Health Canada. The consultations focused on short to long-term approaches to improving Canadians’ access to end-of-life care. CAOT emphasized the need for OTs to be included on inter-professional primary care teams, and for the need to frame dying as part of life, therefore enabling a “good death.” CAOT also recommended a significant increase in the number of OTs to meet the demands of palliative care, particularly in rural and remote areas of Canada.
- As a member of the Quality End-of-Life Care Coalition of Canada (QELCCC), CAOT:CAOT participated in consultations on a palliative approach to care framework with Health Canada. The consultations focused on short to long-term approaches to improving Canadians’ access to end-of-life care. CAOT emphasized the need for OTs to be included on inter-professional primary care teams, and for the need to frame dying as part of life, therefore enabling a “good death.” CAOT also recommended a significant increase in the number of OTs to meet the demands of palliative care, particularly in rural and remote areas of Canada.
- Contributed to legislation, the “ Framework on Palliative Care in Canada Act”, which was enacted into law in December 2017. CAOT continues to meet with Member of Parliament Marilyn Gladu who spearheaded the bill.
- Supports “ The Way Forward National Framework: A Roadmap for an integrated Palliative Approach to Care” with the goal of integrating a palliative approach to care throughout Canada.
- Endorsed the Blueprint for Action 2010-2020 which identifies access to high quality hospice palliative and end-of-life care as a priority for Canadians.
- CAOT revised its End-of-Life Care position statement in 2017 to provide recommendations that support achieving quality end-of-life care for all: “ Canada requires a collaborative, well-funded and sustainable national strategy for hospice, palliative, and end-of-life care services from a team of health professionals that includes occupational therapists."
- CAOT continues to advocate for the re-establishment of a Health Canada Secretariat on Palliative Care.
- CAOT joined over 70 organizations to form an Alliance for a National Seniors Strategy, ( Demand a Plan) (fr link: hht://www.exigeonunplan.ca/] a network advocating for a national seniors strategy involving all levels of government.
- To advocate for OTs to be an integral part of inter-professional primary care teams providing hospice, palliative and end-of life services in order to achieve quality end-of-life care for all.
- To integrate a holistic understanding of dying as a part of life and to allow Canadians, regardless of geographical location, socioeconomic status, or other characteristics, to die with dignity, free of pain, surrounded by loved ones, and in a setting of their choice.
- To improve the training of OTs in the palliative approach to care with a focus on helping OTs discuss difficult subjects such as grief, spirituality, and meaning in life.
- To increase the recruitment and retention of OTs in Canada’s Northern territories, and in underserved rural and remote areas of Canada.
Occupational Therapy Value Proposition
- OTs play an important role in supporting clients, their loved ones and caregivers in maintaining and fostering a sense of cohesion, participation and living, even in the midst of dying. OTs address the client’s physical, social, emotional and spiritual needs, and help to enable participation in everyday activities that bring a sense of purpose to peoples’ lives.
- OTs work with clients to address activities of daily living, psychological and emotional issues (including stress and anxiety), energy conservation, relaxation techniques, seating and mobility, comfort and adaptive and assistive equipment.
- Hiring OTs presents significant cost savings due to decreased risk of institutionalization, and lower hospital re-admission rates, resulting in average savings of over $15M annually (Royal College of Occupational Therapists, 2016).
- Occupational therapy services include provision of assistive technology and compensatory strategies, caregiver support, client and family education, and case management.
- Occupational therapy’s concern for and attention to social justice, inequity and diversity positions occupational therapists to promote equitable access to services, by providing a palliative approach to care within groups of people who are more vulnerable to harm as a result of intersecting factors (e.g. homelessness, gender, disability, race, illicit drug use, mental health issues, etc.).