Statement from the American Occupational Therapy Association (AOTA)

This AOTA statement describes the role of OT in hospice and palliative care, collectively called end-of-life care (EoLC). The statement is designed to be a resource for a variety of audiences, both guiding OT practitioners and demonstrating the evidence-based value of OT services in EoLC.

Key Features:

• Defines key end-of-life care terms.

• Describes OT's role in specific care settings and areas of practice.

• Describes and synthesizes the research supporting OT practice in EoLC settings.

• Walks reader through using the OT process in EoLC (Evaluation, Intervention, Outcomes).

  • • • Case examples provided to illustrate OT process.

Note. This statement is specific to terminal conditions. It is not inclusive of situations where curative treatment succeeds and clients graduate off of palliative care or hospice services. Nor does it describe OT's role in survivorship. This is a known gap in the OT literature and would benefit from additional exploration and research.

 Janice Kishi Chow & Noralyn Davel Pickens

From Abstract: "Underutilization of hospice occupational therapy may be attributable to a lack of evidence on efficacy... Outcome measures of participation in end-of-life occupations and environmental influences on occupational engagement are needed to effectively support occupational therapy practice and research with people who are terminally ill" (p. 1).

Key Features:

• Scoping review that explores current OT practice and outcomes measures used in hospice.

• Identifies key concepts and knowledge gaps related to measuring outcomes.

• Challenges OT practitioners to broaden the scope of their practice outside of the "ADL-IADL box" (p. 7) to better address occupations and goals specific to end-of-life.

Janice Kishi Chow, Noralyn Davel Pickens, Tina Fletcher, Mary Thompson, & Patricia Bowyer

From Abstract: "The purpose of this article was to explore how occupational therapists develop their role in end-of-life care to provide strategies to address underutilization... Personal experiences and critical self-reflection may provide an adaptive means to drive role development and appropriately increase end-of-life care occupational therapy utilization" (p. 109).

Key Features:

• Interviews with OT practitioners uncovered ways in which they have developed their roles in end-of-life care (autonomous role development).

• Uses the Model of Human Occupation (MoHO) as the theoretical framework.

• Describes the Model of Occupational Therapists' Role Development in End-of-Life Care.

Anna Park Lala & Elizabeth Anna Kinsella

From Abstract: "Occupational therapists propose that occupation is a basic human need across the lifespan... The purpose of this study was to examine the embodied nature of occupation at end of life... Participants described orientations toward occupations that involved: living with death, reworking everyday life, being guided by the will of the body, giving priority to relationships, attending to the small things, and engaging existential orientations" (p. 246).

Key Features:

• A phenomenological study informed by the Doing-Being-Becoming-Belonging framework.

  • • • Interviews provide a rich representation of client perspectives. 

• Focuses on the experience of occupation at the end of life and its unique contexts.

• "[Offers] a starting point to guide practice that is attentive to the lived dimensions of occupation at end of life" (p. 246).

Rosalind A. Bye

From Abstract: "Occupational therapists working with people who are terminally ill potentially face a contradiction between the principles and assumptions of rehabilitation-oriented practice and the needs and experiences of clients who are dying. This research investigated experiences of occupational therapists working with clients who are terminally ill to examine if such a contradiction existed and, if so, how it was managed in daily practice" (p. 3).

Key Features:

• Exploration of occupational therapists' experiences working with terminally ill persons.

  • • • And their strategies for providing end-of-life OT services as practitioners of a traditionally rehabilitation-oriented profession.

• Research resulted in the development of the Affirming Life: Preparing for Death framework (later called Focusing on Life: Preparing for Death).

• Considered by many to be a seminal article in the study of OT's role in end-of-life care. Frequently cited.

• Older publication date but content is still highly relevant.

Kathrine Hammill, Rosalind Bye, & Catherine Cook

From Abstract: "[This] study aimed to gain an in-depth understanding of occupational therapists’ perceptions on clients’ occupational engagement post-diagnosis of a life-limiting condition... Therapists perceived that meaningful occupational engagement changes over time as occupational performance levels decrease and clients prepare for death" (p. 145).

Key Features:

• Describes and synthesizes occupational therapist perspectives.

  • • • Includes direct quotes and examples.

      • Includes strategies used by OTs to support engagement in occupation.

• Focuses on occupations and goals important to those living with life-limiting illness.

• Describes the Focusing on Life: Preparing for Death framework (builds on Bye's (1998) framework).

Kathrine Hammill, Rosalind Bye, & Catherine Cook

From Abstract: "Little is known about occupational therapy practice for people with a life-limiting illness. This paper aims to review the available occupational therapy literature in order to develop a greater understanding of the role and practice trends of occupational therapists working in this area" (p. 582).

Key Features:

• A historical perspective of OT practice and how it has adapted to serve people with life-limiting illness.

• Identifies insufficient education for OT practitioners as a barrier to effective service implementation.

• Describes some of the primary methods used by OT practitioners to meet the unique needs of this population.

Ana Costa & Marilia Othero

From Abstract: "The objective of the article is to demonstrate how Palliative Care (PC) can be included in the theory of the Model of Human Occupation (MOHO)... The Occupational Therapist based on MOHO can evaluate and help the client to maintain or re-gain his/her occupational identity, and life story. On the other hand, the Occupational Therapist should help the client to accomplish their last wishes and live with quality of life till the last moment" (p. 316).

Key Features:

• One of the few pieces of literature that addresses the role of culture in palliative care.

  • • • Examples provided of different cultural perceptions of illness and death.

• Draws connections between the principles of MoHO and palliative care.

• Explores the utility of MoHO in palliative care for OT practitioners.

  • • • Describes how to implement in practice.

Hsin-Hsiu Essential Yeh & Mary Ann McColl

From Abstract: "This article presents a scoping review of 74 papers from the peer reviewed literature dealing with occupational therapy in palliative care... [The five emergent themes] are combined to form a model to guide occupational therapy in palliative care. The model offers structure and direction for occupational therapists in order to offer an opportunity for clients in palliative care to flourish toward the end of their lives" (p. 108).

Key Features:

• Explores OT literature to identify the interventions and concepts used most commonly by OT practitioners in palliative care. 

• Describes each of the five themes.

• Developed, proposes, and describes the Model for Occupation-Based Palliative Care (MOB-PC).

  • • • Includes graphic.