CAOT Position Statement: Occupational Therapy and End-of-Life Care (2011)
The Canadian Association of Occupational Therapists (CAOT) believes all people of all ages in Canada have the right to quality end-of-life care that allows them to die with dignity, free of pain, surrounded by their loved ones, in a setting of their choice. To achieve quality end-of-life care for all, Canadians require a collaborative, well-funded and sustainable national strategy for hospice palliative and end-of-life care and services from a team of health professionals that includes occupational therapists.
Recommendations for occupational therapists
1. Occupational therapists continue to develop partnerships with relevant organizations and stakeholders to promote access to end-of-life care for the people of Canada that promote quality of life and relieve suffering.
2. Occupational therapists promote the development of research among stakeholders that will advance best practices in end-of-life care.
3. Occupational therapists engage in continuing professional education to use best practices based on research for quality outcomes in end-of-life care.
4. Occupational therapists engage in practices that offer quality end-of life occupational therapy services.
To enable occupational therapist to deliver quality end-of- life care, CAOT will:
1. Advocate for involvement of occupational therapists in end-of-life services
2. Collaborate with national groups such as the Quality End-of-Life Care Coalition of Canada (QELCCC), to advocate for end-of-life care strategies or programs.
3. Promote occupational therapy specific and interdisciplinary research studies that expand the knowledge base for end-of-life care in Canada.
4. Facilitate the development of continuing professional education content and material that meet practice needs.
End-of-Life in Canada
It is estimated that approximately 247,000 deaths occur each year (Statistics Canada, 2010). This rate is projected to rapidly increase in the next thirty years, due to the aging baby boom generation. According to the Canadian Senate’s report (2000), ‘Quality End-of-Life Care: The Right of Every Canadian,’ 75% of people who die in Canada each year are over the age of 65. Since chronic diseases account for 70% of all deaths, it is predicted that 181,300 Canadians in 2007 and 231,000 by 2020 will need access to hospice palliative care services and programs. However, “only 25% of Canadians who need palliative and end-of-life care services currently have access to appropriate programs and services” (QELCC, 2007, p. 1). It has been proposed that the end-of-life process can affect the well being of five other people (Canadian Senate, 2000). This means that every year, death and dying can potentially affect over 1.4 million Canadians (Carstairs, 2000).
End-of-life care aims to relieve suffering and improve the quality of living while dying for persons diagnosed with an advanced or terminal illness or who are bereaved (Canadian Hospice Palliative Care Association [CHPCA], 2010a). End-of-life care is appropriate for individuals of any age and/or their families, who are living with or at risk of developing a life-threatening illness.
The QELCC advocates for an on-going, well-funded, sustainable national approach to end-of- life care in the 2007 document, A Pan-Canadian Partnership for Palliative and End-of-Life Care. The document offers three major recommendations: develop a multi-level, multi-department consultation to steer the construction of a clear action plan; create a broad-based advisory committee to guide the development of new policies; and support continued research to help deepen understanding of end-of-life care issues.
Occupational Therapy and End-of-Life
Occupational therapists are university- educated, regulated health professionals in all ten provinces of Canada. Broadly, the focus of their care is to enable clients’ participation and engagement in everyday occupations across the life span. Occupation is defined as everything that people do to occupy themselves, including looking after themselves (self-care), enjoying life (leisure) and contributing to the social and economic fabric of their communities (productivity) (CAOT, 1997; 2002).
Occupational therapists propose that occupation is a basic human need (Wilcock, 2006) across the life span, including end-of-life. Although the role of occupational therapy at end-of-life is diverse and can vary among facilities, occupational therapists are primarily concerned with enabling and improving quality end-of-life experiences through occupation (Egan, 2003; Holland & Nelson Tigges, 1981; Picard & Magno, 1982; Pizzi, 1984; Tigges & Sherman, 1983). This can be achieved through a number of therapeutic interventions. Commonly cited interventions include addressing: activities of daily living (ADLs), psychological and emotional issues (including stress and anxiety), exercise programs, splinting and positioning, energy conservation, relaxation techniques, seating and mobility, comfort, adaptive and assistive equipment, support and education for the family caregivers, connecting the patient with community services and supports, and conducting home assessments (Armitage & Crowther, 1999; Egan, 2003; Ewer-Smith & Patterson, 2002; Frost, 2001; Littlechild, 2004; Marcil, 2006). These types of interventions play a major role in assisting individuals to live safely and comfortably at home, preventing injury, and controlling pain.
The importance of occupational engagement at end-of-life has been documented in the literature. An important finding in a study by Vrkljan and Miller-Polgar (2001), that investigated how women engaged in occupation following the diagnosis with a life-threatening illness, was that occupational engagement can facilitate feelings of ‘living.’ In fact, terminally-ill individuals who are able to request lethal intervention to hasten their deaths have reported that the limited ability to participate in activities that make life enjoyable is a factor contributing to their decision (Oregon Department of Human Services, 2006, 2007, 2008). In a recent phenomenological study that examined the nature of occupation at end-of-life from the perspectives of older Canadians living at home (Park Lala & Kinsella, in press), the findings indicated that people at end-of-life may be engaged in occupations that involve: living while dying; reworking everyday life; being guided by the will of the body, focusing on relationships, attending to the small things in life, and engaging existential orientations. Lastly, Jacques and Hasselkus (2004) conducted an ethnographic study at a hospice and found that ‘occupation is the good death,’ in that engagement in occupation, both ordinary and extraordinary, played a significant role in fostering meaningful end-of-life experiences for the participants in their study. Therefore, the literature indicates that in the end stages of life, people with advanced and/or terminal illnesses may develop a sense of living through occupational engagement and may be engaged in a range of occupational pursuits. Further, there is potential that engagement in occupation may contribute to improved dying experiences. These findings suggest that attention to the occupational needs of people diagnosed with advanced and life-threatening illnesses may contribute to the design and delivery of care that facilitates quality end-of-life experiences.
Occupational therapists are able to provide their clients with unique services that are focused on enabling meaningful occupational experiences. Some might question whether rehabilitative professions, including occupational therapy, are appropriate in end-of-life settings. However occupational therapists are trained to deliver care that is attentive to the unique and individual needs of their clients. Occupational therapists value and implement client-centered and holistic approaches to care that attend to the client first, versus the diagnosis (Hubbard, 1991; McColl, 1994). At end-of-life, such approaches would involve reframing and tailoring interventions to adapt to the client’s changing goals, as well as addressing the client’s physical, social, emotional and spiritual needs and occupational pursuits over time (Bye, 1998; Pizzi & Briggs, 2004; Rose, 1999). While the focus of care at end-of-life may not be on rehabilitating clients back to a former state of health, occupational therapists play an important role in supporting clients in maintaining and fostering a sense of cohesion, participation, and living, even in the midst of dying.
Access to Occupational Therapy Services at End-of-Life in Canada
The CAOT is committed to facilitating and improving Canadians’ access to end-of-life services that include occupational therapy care. The CAOT is a member of the QELCC, a 30-member organization that advocates for quality end-of-life care for all Canadians. The QELCC calls on the federal government to take a strong leadership role in improving access to palliative and end-of-life care. According to the QELCC (2007), a rapidly growing number of Canadians are in need of end-of-life support, but only 25% have access to these services. A significant accomplishment of the QELCC, through its advocacy, was to enact changes to the Compassionate Care Benefits which resulted in expanded eligibility for the benefit in 2006.
Professional Education for End-of-Life care
In terms of professional education, more research and education is needed to raise the profile for occupational therapy in end-of-life care (Dawson & Barker, 1995). A recent survey was conducted in Australia and New Zealand (Meredith, 2010) that examined the current state of palliative care education in occupational therapy schools found that 54% of clinicians reported no palliative care training in their education. Consideration should be given to increasing access to professional development, through the form of courses or workshops in end-of-life care and collaborating with other interdisciplinary healthcare professions, to better prepare therapists with interest in this practice setting.
It is important to note that end-of-life care education is not limited to occupational therapists working in palliative care settings. Client deaths occur in many areas of practice. As Cirpriani, Crea, Cvrkel, Dagle, Monaghan, and Seldomridge (2000) have indicated, 95% of the occupational therapists in their study had encountered a client death. The provision of end-of-life education for all therapists, particularly students and entry-level graduates, is a priority.
Research in End-of Life Care
A recent systematic literature review that examined the role of occupation and occupational therapy at end-of-life (Park Lala, 2011) revealed a number of areas requiring further research. Some examples include a need to further:
• conduct more empirical research surrounding occupation at end-of-life
• investigate quiet and small occupations that may take on more significance at end-of-life (see Jacques & Hasselkus, 2004; Hasselkus, 1993; Park Lala & Kinsella, in press; Thibeault, 1997)
• investigate occupational therapists’ experience working in end-of-life settings, how they manage their personal and professional lives in such settings, and factors that contribute to their degree of comfort (see Bye, 1998; Cipriani et al., 2000; Prochnau, Liu, & Boman, 2003; Rahman, 2000; Warne & Hoppes, 2009)
• consider the potential for occupation to facilitate improved dying experiences (see Jacques & Hasselkus, 2004; Park Lala & Kinsella, in press)
• investigate the experience of children and young adults facing terminal illnesses, and the experience of caregiving and bereavement from occupational perspectives (see Hoppes & Segal, 2010; Reid & Reid, 2000).
Glossary of Terms
Enabling (verb) – Enablement (noun): Focused on occupation, is the core competency of occupational therapy – what occupational therapists actually do – and draws on an interwoven spectrum of key and related enablement skills, which are value-based, collaborative, attentive to power inequities and diversity, and charged with visions of possibility for individual and/or social change (Townsend & Polatajko, 2007).
End-of-Life: The period of life leading up to the point of death, often following the diagnosis of a terminal illness (Auger, 2007).
Hospice Palliative Care: Drawing on the Canadian Hospice Palliative Care Association (2010b), hospice palliative care refers to: “whole-person health care that aims to relieve suffering and improve the quality of living while dying” (p. 2)
Occupations: Everything people do to occupy themselves, including looking after themselves (self-care), enjoying life (leisure) and contributing to the social and economic fabric of their communities (productivity); the domain of concern and the therapeutic medium of occupational therapy (CAOT, 1997, 2002); a set of activities that is performed with some consistency and regularity; bring structure and are given meaning by individuals and a culture (adapted from Polatajko et al., 2004 and Zimmerman et al., 2006).
Armitage, K., & Crowther, L. (1999). Autonomy. The role of the occupational therapist in palliative care. European Journal of Palliative Care, 6(5), 154-157.
Auger, J.A. (2007). Social perspectives on death and dying. Black Point, NS: Fernwood Publishing.
Bye, R.A. (1998). When clients are dying: Occupational therapists' perspectives. Occupational Therapy Journal of Research, 18, 3-24.
Canadian Association of Occupational Therapists (1997; 2002). Enabling occupation: An occupational therapy perspective (Rev. ed.). Ottawa, ON: CAOT Publications ACE.
Canadian Hospice Palliative Care Association (2010a). Fact sheet: Hospice palliative care in Canada. Ottawa, ON: Canadian Hospice Palliative Care Association.
Canadian Hospice Palliative Care Association (2010b). Canadian Hospice Palliative Care Association. Retrieved January 12th, 2010, from, http://www.chpca.net/Home.
Canadian Senate (2000). Quality end-of-life care: The right of every Canadian. Retrieved December 28th, 2008, from http://www.parl.gc.ca/36/2/parlbus/commbus/senate/Com-e/upda-e/rep-e/repfinjun00-e.htm
Carstairs, S. (2000). Quality end-of-life care: The right of every Canadian. Ottawa, ON: Government of Canada Senate Report.
Cipriani, J.A., Crea, J., Cvrkel, K., Dagle, S., Monaghan, K., & Seldomridge, L. (2000).Coping with the death of clients: A pilot study of occupational therapy practitioners. Physical & Occupational Therapy in Geriatrics, 17(4), 65-77.
Dawson, S., & Barker, J. (1995). Hospice and palliative care: A Delphi survey of occupational therapists/ roles and training needs. Australian Occupational Therapy Journal, 42, 119-27.
Egan, M. (2003, September). Occupational therapy at home and in the community for people and families in palliative care. Occupational Therapy Now, 5.
Ewer-Smith, C., & Patterson, S. (2002). The use of an occupational therapy programme within a palliative care setting. European Journal of Palliative Care, 9(1), 30-33.
Frost, M. (2001). The role of physical, occupational, and speech therapy in hospice: Patient empowerment. American Journal of Hospice & Palliative Care, 18(6), 397-402.
Hasselkus, B.R. (1993). Death in very old age: A personal journey of caregiving. American Journal of Occupational Therapy, 47(8), 717-723.
Holland, A., & Tigges, K. (1981). The hospice movement: A time for professional action and commitment. British Journal of Occupational Therapy, 44, 373-6.
Hoppes, S., & Segal, R. (2010). Reconstructing meaning through occupation after the death of a family member: Accommodation, assimilation, and continuing bonds. American Journal of Occupational Therapy, 64, 133-141.
Hubbard, S. (1991). Towards a truly holistic approach to occupational therapy. British Journal of Occupational Therapy, 54(11), 415-418.
Jacques, N.D., & Hasselkus, B.R. (2004). The nature of occupation surrounding dying and death. OTJR: Occupation, Participation, and Health, 24(2), 44-53.
Littlechild, B. (2004). Occupational therapy in a hospice inpatient unit. European Journal of Palliative Care, 11(5), 193-196.
Marcil, W. (2006). The hospice nurse and occupational therapist: a marriage of expedience. Home Health Care Management & Practice, 19(1), 26-30.
McColl, M.A. (1994). Holistic occupational therapy: Historical meaning and contemporary implications. Canadian Journal of Occupational Therapy, 61, 72-77.
Meredith, P.J. (2010). Has undergraduate education prepared occupational therapy students for possible practice in palliative care? Australian Occupational Therapy Journal, 57(4), 224-232.
Oregon Department of Human Services. (2006). Oregon dying with dignity act: Annual report. Retrieved March 3rd, from http://www.oregon.gov/DHS/ph/pas/ar-index.shtml
Oregon Department of Human Services. (2007). Oregon dying with dignity act: Annual report. Retrieved March 3rd, from http://www.oregon.gov/DHS/ph/pas/ar-index.shtml
Oregon Department of Human Services. (2008). Oregon dying with dignity act: Annual report. Retrieved March 3rd, from http://www.oregon.gov/DHS/ph/pas/ar-index.shtml
Park Lala, A., & Kinsella, E.A. (in press). A phenomenological inquiry into the embodied nature of occupation at end-of-life. Canadian Journal of Occupational Therapy.
Park Lala, A. (2011). A phenomenological inquiry into the embodied nature of occupation at end of life. Unpublished doctoral dissertation. University of Western Ontario. Ontario, Canada.
Picard, H.B., & Magno, J.B. (1982). The role of occupational therapy in hospice care. American Journal of Occupational Therapy, 36(9), 587-598)
Pizzi, M.A. (1984). Occupational therapy in hospice care. American Journal of Occupational Therapy, 38(4), 252-256.
Pizzi, M., & Briggs, R. (2004). Occupational and physical therapy in hospice: The facilitation of meaning, quality of life, and well-being. Topics in geriatric rehabilitation, 20(2), 120-130.
Polatajko, H. J., Davis, J. A., Hobson, S., Landry, J. E., Mandich, A. D., Street, S.L. et al. (2004). Meeting the responsibility that comes with the privilege: Introducing a taxonomic code for understanding occupation. Canadian Journal of Occupational Therapy, 71(5), 261-264.
Prochnau, C., Liu, L., & Boman, J. (2003). Personal-professional connections in palliative care occupational therapy, American Journal of Occupational Therapy, 57, 196-204.
Quality End of Life Care Coalition of Canada. (2007). Pan-Canadian Partnership for Palliative and End-of-Life Care. Retrieved on April 16, 2008 from http://www.chpca.net/qelccc/resources.htm.
Rahman, H. (2000). Journey of providing care in hospice: Perspectives of occupational therapists. Qualitative Health Research, 10, 806-818.
Reid, C., & Reid, J. (2000). Care giving as an occupational role in the dying process. Occupational Therapy in Health Care, 12(2/3), 87-93.
Rose, A. (1999). Spirituality and palliative care: The attitudes of occupational therapists. British Journal of Occupational Therapy, 62, 307-12.
Statistics Canada. (2010). Population projections for Canada, provinces and territories, 2009-2036 (Catalogue no. 91-520-X). Ottawa, ON: Statistics Canada.
Thibeault, R. (1997). A funeral for my father’s mind: A therapist’s attempt at grieving. Canadian Journal of Occupational Therapy, 64, 107-114.
Tigges, K.N., & Sherman, L.M. (1983). The treatment of the hospice patient: From occupational history to occupational role. American Journal of Occupational Therapy, 37(4), 235-238.
Townsend, E.A. & Polatajko, H. J. (2007). Enabling occupation II: Advancing an occupational therapy vision for health, well-being & justice through occupation. Ottawa, ON: CAOT Publications ACE.
Vrkljan, B., & Miller-Polgar, J. (2001). Meaning of occupational engagement in life-threatening illness: A qualitative pilot project. Canadian Journal of Occupational Therapy, 68, 237-246.
Warne, K.E., & Hoppes, S. (2009). Lessons in living and dying from my first patient: An autoethnography. Canadian Journal of Occupational Therapy, 76(4), 309-316.
Wilcock, A.A. (2006). An occupational perspective of health. Thorofare, NJ: Slack Incorporated.
Zimmerman, D., Purdie, L., Davis, J., & Polatajko, H. (2006, June). Examining the face validity of the taxonomic code of occupational performance. Presented at the Thelma Cardwell research day, Faculty of Medicine, University of Toronto, ON, Canada. Retrieved March 28, 2007, from http://www.ot.utoronto.ca/research/research_day/documents/rd_06_proceedings.pdf
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