Missed Opportunities to Ease Suffering: An Explanatory Model of Occupational Therapy Utilization in End-of-Life Care

Background: With disease progression, a terminally ill person may experience loss of physical and cognitive skills required to perform everyday activities. Such functional loss can erode autonomy and cause existential suffering. Supported engagement in everyday activities may help terminally ill people stay involved in living and cope with dying. Occupational therapy enables people to engage in valued activities at the end of life, yet remains under-utilized. Objectives: To address the perceived under-utilization of end-of-life care occupational therapy, the authors investigated how utilization of occupational therapy in end-of-life care is determined from the perspective of decision-makers and occupational therapists and then developed a model of the process. Methods: Using a grounded theory method, authors conducted two semi-structured interviews with 20 decision-makers and 21 occupational therapists. Theoretical sampling followed by paradigm analysis, yielded a data-grounded model. Results: The authors developed The Model of Occupational Therapy Utilization in End-of-Life Care. Service utilization was primarily contingent upon the decision-makers' awareness of occupational therapy's role in end-of-life care and further influenced by place of care cost constraints and participants' ability to adjust focus of the occupational therapy to accommodate the patient's dying process. Conclusion: Limited awareness of occupational therapy's role in end-of-life care warrants research on whether modification of model constructs may increase awareness and utilization. Education is indicated to teach providers about suffering due to functional loss and how to adjust focus of occupational therapy to sustain occupational participation through decline, across different care settings, and along a range between rehabilitation-focused to participation-focused outcomes.