How the utilization of occupational therapy in end-of-life care is determined
Chow, Janice Kishi
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Aging with chronic illness and dying of a terminal disease are complicated and arduous processes. Occupational participation at the end-of-life may offer means to cope, co-exist with dying, and live with purpose and quality of life. Occupational therapists have the expertise to maximize occupational participation in critical end-of-life tasks. However, occupational therapy remains under-utilized in end-of-life services. This grounded theory study, based on the Model of Human Occupation, investigated how the utilization of occupational therapy in end-of-life care is determined, from the perspectives of 21 occupational therapists and 20 decision makers. The model developed suggests utilization is contingent upon the decision maker’s awareness of occupational therapy’s role in end-of-life care and influenced by place of care demands and the decision maker’s ability to adjust focus of the occupational therapy referral to accommodate the patient’s goals and dying process. Although decision makers’ awareness and place of care did not consistently support occupational therapy utilization, occupational therapists were found to facilitate occupational adaptation in their patients through patient-centered care, attention to environmental supports, and focus on participation rather than performance. Utilization also varied by place. In community-based hospices, utilization was contingent upon the decision maker’s understanding of occupational therapy’s value and the Medicare Hospice Benefit. In non-traditional end-of-life care settings, occupational therapists had to autonomously identify and advocate for end-of-life care services. At a Veterans Affairs inpatient hospice setting, the occupational therapist needed to define occupational therapy’s scope of practice to avoid over-utilization. Among the places of this study, occupational therapy was most utilized at community-based, continuum of care settings, due to occupational therapy’s alignment with a common workplace mission to keep patients at home until the end of life and these settings being larger organizations to pool resources for occupational therapy services. There is a lack of decision makers’ awareness of occupational therapy to support the occupational needs of people with life-limiting illness. Further research, occupational therapy educational reforms, and advocacy are warranted to increase greater occupational therapy utilization and to support meaningful occupational participation at the end of life.