Death and Dying

What is deliberately dying as an occupation?

“Deliberately dying can be a purposeful and meaningful occupation,” meaning occupation includes meaningful living and meaningful dying. (Guay et al., 2022)

Define End of Life.

Describes the total circumstances of a person with a life‑threatening illness. (la Cour & Lindahl‑Jacobsen, 2018)

Define Supportive Care.

Care focused on helping clients and families cope with their condition and treatment.

Define Palliative Care.

Active care for patients whose disease is unresponsive to curative treatment; goal is best quality of life.

Define Hospice.

Terminal stage of palliative care; requires certification by two physicians that prognosis is ≤ 6 months.

What factors contribute to a “Good Death”?

Awareness of dying, social adjustment, delegation of care, symptom control, closure, strong relationships, spiritual support, public preparation.

What is the Death With Dignity Act?

Oregon law (1977) allowing terminally ill individuals to voluntarily self‑administer lethal medication prescribed by a physician.

What are common advance care planning tools?

Advanced directives, living will, DNR, durable power of attorney, medical power of attorney, POLST.

Key Latino/Hispanic end‑of‑life practices.

Burial within 24 hours, large family presence, emotional expression, prognosis often protected, Día de los Muertos traditions.

Key Muslim end‑of‑life practices.

Qur’an prayers, face Mecca, wrap body, bury quickly.

Key Jewish end‑of‑life practices.Body never left alone, burial within 24 hours, 7‑day mourning period.

Key Asian Indian end‑of‑life practices.

Family decision‑making, Hindu beliefs/karma, only family touches body, cloth wrap, mirrors covered.

Key Chinese end‑of‑life practices.

Yin/yang balance, Buddhist beliefs, oldest male decision‑maker, prefer warmth, nondisclosure of symptoms.

Cardiac/circulation changes at end of life.

↓ perfusion, skin discoloration, ↓ cerebral perfusion, delirium, ↓ cardiac output, tachycardia, hypotension, cyanosis.

Urinary changes at end of life.

↓ urinary output, possible incontinence.

Food/fluid changes at end of life.

↓ interest in food/fluid, weight loss, dehydration, swallowing difficulty, choking, pocketing.

Skin changes at end of life.

Mottling, discoloration, pressure ulcers.

Respiratory changes at end of life.

Retained secretions, noisy breathing, dyspnea, Cheyne‑Stokes breathing.

General changes at end of life.

Profound fatigue, extended sleep, disorientation, visions of deceased loved ones (normal).

What is the Kübler‑Ross grief cycle?

Denial → Anger → Bargaining → Depression → Acceptance (nonlinear).

Why palliative care is often misunderstood.

People confuse it with giving up or DNR; actually focuses on comfort, quality of life, and symptom management.

Does palliative care mean DNR?

No — palliative care does not equate with DNR.

What percentage of hospice patients receive OT?

10.6% receive OT, despite 85% needing help with at least one ADL.

Why choose hospice services?

24/7 care, family support, stay at home, avoid hospitalization, pain/symptom management, equipment/supplies covered, bereavement services.

Common hospice diagnoses.

Dementia, heart disease, cancer, respiratory disease, stroke, kidney disease.

OT’s core role in hospice.

Promote engagement in meaningful occupations to enhance quality of life, dignity, independence, and sense of control.

Benefits of OT in hospice.

Coping with social isolation, task analysis, environmental modification, energy conservation, maintaining physical abilities.

Barriers to OT use in hospice.

Limited understanding of OT role, psychological symptoms, late referrals, lack of resources.

What is the occupation‑based palliative care model?

A model emphasizing valued occupations, changing occupational needs, balancing life affirmation and preparation for death, and safe supportive environments.

What are the four types of occupations in the model?

Doing, Being, Becoming, Belonging.

What assessments are appropriate for OT in end‑of‑life care?

COPM, Palliative Performance Scale (PPS), SPEED, NEST.

Examples of OT interventions that affirm life.

Relaxation techniques, socialization activities, typical client‑centered OT interventions.

Examples of OT interventions preparing for death.

Legacy work, visiting meaningful places, saying goodbyes, giving away valued items, completing unfinished business.

What is the Conversation Project?

A resource helping individuals discuss what matters most at the end of life.

What should OT goals focus on in hospice?

Quality of life, comfort, participation, abilities, caregiver training, environmental needs.

What should OT goals NOT focus on in hospice?

Restoration and time‑based outcomes.

Key communication principles for end‑of‑life care.

Empathy, perspective‑taking, avoiding judgment, matching emotional tone, never letting the client comfort you, meeting clients where they are.

Why visions of deceased loved ones occur near death.

Normal part of the dying process; not necessarily hallucinations.

What is mottling?

Purplish or pinkish discoloration of skin due to decreased perfusion near death.

What is Cheyne‑Stokes breathing?

Cycles of deep breathing followed by shallow breathing and apnea.

Why repositioning every 2 hours matters.

Prevents pressure ulcers due to immobility and poor nutrition.

What is legacy work?

Activities like letters, videos, memory projects that help clients create meaningful closure.

What is the purpose of caregiver training in hospice OT?

Support continued participation in meaningful occupations and maintain comfort and safety.

Why OT emphasizes abilities at end of life.

Focusing on what clients can do promotes dignity, purpose, and quality of life.

What is the role of active listening in hospice OT?

Helps practitioners meet client needs and support emotional processing. (Russell & Bahle‑Lampe, 2016)