End-of-life care supports clients and families through the final phase of a life-limiting illness, focusing on comfort, dignity, and quality of life. It includes physical symptom management, psychological and spiritual care, family support, and care of the body after death.
Key terms
- Palliative care — interdisciplinary care that relieves symptoms and suffering for anyone with serious illness, at any stage, alongside curative treatment.
- Hospice — palliative care for clients with a limited prognosis (in the US, generally 6 months or less) who have chosen comfort-focused care instead of curative treatment; provided at home or in facilities, with bereavement support for families.
- Advance directives — a living will (treatment wishes) and a health care proxy / durable power of attorney for health care (a named decision-maker).
- Do-not-resuscitate (DNR / DNAR / allow natural death) order — no CPR in cardiac or respiratory arrest; it does not mean withholding other care.
- POLST-type medical orders translate wishes into portable orders for seriously ill clients.
- Principle of double effect — giving medication with the intent to relieve suffering is ethical even if a foreseen, unintended effect (such as sedation) may occur. Palliative sedation for refractory symptoms follows this principle and is distinct from euthanasia.
Why the body changes near death: falling cardiac output and blood pressure reduce perfusion to the skin, kidneys, and brain; brainstem function declines; muscles lose tone.
Signs that death is approaching (hours to days)
| System | Signs |
|---|
| Neurologic | Increasing sleepiness, decreasing level of consciousness to unresponsiveness; restlessness or terminal delirium; some clients have a brief period of unexpected alertness and energy shortly before death; hearing is thought to be one of the last senses to fade |
| Respiratory | Irregular breathing, Cheyne-Stokes respirations (waxing and waning depth with periods of apnea), mouth breathing, noisy breathing from pooled secretions ("death rattle"), periods of apnea; breath sounds become coarse and then diminish |
| Circulatory | Weak, rapid or irregular, thready pulse — peripheral pulses fade first while the carotid may still be felt; falling BP; cool, mottled extremities (knees and feet first) from peripheral vasoconstriction; delayed capillary refill |
| Renal | Decreased urine output to anuria from reduced kidney perfusion; incontinence |
| Gastrointestinal | Reduced appetite and thirst, difficulty swallowing, loss of gag reflex |
| Temperature | Irregular — fever or cool skin, because hypothalamic control weakens |
| Face and muscles | Relaxed jaw, sunken eyes, pinched nose and pale waxy skin; eyes may stay partly open |
- Symptoms: pain, dyspnea, secretions, agitation or delirium, nausea, dry mouth, constipation, anxiety
- Nonverbal signs of discomfort in unresponsive clients (grimacing, moaning, restlessness) using an observational pain tool
- Skin, mouth, and eyes; bladder distension (retention causes agitation)
- Understanding of the prognosis by client and family; goals of care; cultural and spiritual needs
- Family coping and grief:
Kübler-Ross stages of dying — denial, anger, bargaining, depression, acceptance — describe common reactions; people move among them in no fixed order.
| Stage | Example | Nursing approach |
|---|
| Denial | "The test must be wrong" | Listen; do not force acceptance; give information as the client is ready |
| Anger | "Why me?" directed at staff or family | Accept anger without taking it personally |
| Bargaining | "Let me live until my daughter's wedding" | Listen, avoid false promises, support spiritual needs |
| Depression | Withdrawal, sadness | Presence, silence, avoid forced cheerfulness |
| Acceptance | Calm, completing affairs | Support time with family, respect wishes |
Types of grief include anticipatory grief (before the loss), normal grief, prolonged grief disorder (intense, disabling grief persisting long after the loss), and disenfranchised grief (loss not openly acknowledged by society).
- Diagnostic tests are minimized — only those that change comfort-focused care.
- Prognostic tools (e.g., Palliative Performance Scale) help identify hospice eligibility and plan care.
- Death is determined by the provider or another authorized clinician according to law and policy: absence of pulse, respirations, and heart sounds, fixed pupils; brain death uses formal neurologic criteria.
Symptom management — drug safety
| Symptom | Management | Safety points |
|---|
| Pain | Scheduled opioids (morphine, hydromorphone) with breakthrough doses; routes: oral, sublingual concentrate, subcutaneous | Constipation (bowel regimen), sedation, myoclonus with accumulation in kidney failure (prefer hydromorphone or fentanyl over morphine, whose active metabolites accumulate); comfort is the goal, and sedation from adequate symptom relief is acceptable |
| Dyspnea | Low-dose opioids (reduce air hunger), fan to the face, upright position, calm presence; oxygen if hypoxemic and helpful | Titrate to comfort (comfort goals differ from active treatment, where hypoxemia is always treated — see COPD) |
| Terminal respiratory secretions | Reposition (side-lying, head raised), gentle oral suction of the mouth only; anticholinergics (glycopyrrolate, scopolamine patch, atropine drops) given early | Anticholinergics cause dry mouth, urinary retention, and (scopolamine, atropine) confusion; deep suctioning is avoided — it is distressing and rarely helps |
| Terminal delirium / agitation | Rule out retention, pain, constipation; haloperidol; benzodiazepines (e.g., midazolam, lorazepam) for distress | Extrapyramidal effects and QT prolongation with haloperidol; respiratory depression with benzodiazepines plus opioids |
| Nausea | Antiemetics (haloperidol, metoclopramide, ondansetron) | Metoclopramide contraindicated in bowel obstruction |
| Anxiety | Presence, counseling, benzodiazepines if needed | Sedation, falls |
Artificial nutrition and hydration usually do not relieve thirst or prolong comfortable life in the final days and may worsen edema, secretions, and breathlessness. Reduced intake is a natural part of dying; decisions follow the client's wishes and goals.
- Comfort and safety: treat pain and dyspnea promptly; position with the head raised or on the side to ease breathing and drain secretions; turn gently every few hours or as comfort allows.
- Mouth and eye care: moisten the mouth with soft swabs or sponges and water or saline, apply lip balm; avoid harsh antiseptics and lemon-glycerin swabs (they dry and irritate the mucosa); lubricate eyes that stay open.
- Skin and elimination: keep skin clean and dry; absorbent pads or a catheter for comfort; watch for retention.
- Communication: speak to the client and explain care even if unresponsive, because hearing may persist; encourage family to talk to and touch the client.
- Support the family: explain expected changes (breathing patterns, mottling, secretions) so they are less frightening; encourage presence and saying goodbye; offer chaplain or faith leader support; listen without judgment and allow expression of feelings; respect cultural and religious rituals.
- Honor advance directives and goals of care; clarify code status; advocate when care conflicts with the client's wishes.
- Care for yourself and colleagues — debriefing and support reduce moral distress.
Post-mortem care
- Confirm that death has been pronounced and documented (time of death) per policy; notify the provider and family according to policy; organ and tissue donation processes follow facility and legal requirements.
- Determine whether the death is a coroner's or medical examiner's case or an autopsy is planned — if so, leave tubes, lines, and devices in place per policy.
- Follow standard precautions.
- If not a coroner's case, remove tubes and lines per policy and cover sites with small dressings.
- Place the body supine and aligned, with the head and shoulders slightly raised on a pillow to prevent blood pooling and discoloration of the face.
- Close the eyes by gently holding the lids down for a few seconds (a moist cotton pad may help); insert dentures to preserve facial shape; place a small rolled towel under the chin to close the mouth.
- Wash soiled areas, place absorbent pads, provide a clean gown, and cover the body to the shoulders; tidy the room and dim harsh lights before the family views.
- Allow family time with the body and support their rituals; some traditions wish to wash or prepare the body themselves or to have a faith leader present.
- Remove and document valuables and give them to the family per policy.
- Apply identification tags per policy (e.g., wrist or ankle and outside the shroud); transport to the morgue or release to the funeral home; complete documentation.
Post-mortem changes: rigor mortis (stiffening) begins about 2–4 hours after death — positioning and denture insertion should be done early; algor mortis (cooling, roughly 1 °C per hour until room temperature); livor mortis (purple discoloration in dependent areas).
- Explain palliative care and hospice options early, not only in the last days.
- Encourage completion of advance directives and discussion of wishes with family and the named decision-maker.
- Teach family what to expect in the final days and how to give comfort: mouth care, repositioning, talking and touch.
- Teach home caregivers how to give prescribed comfort medications and whom to call — including what to do at the time of death at home.
- Offer bereavement resources; grief is individual and has no fixed timeline.
| Concern | Response |
|---|
| Uncontrolled pain or dyspnea | Reassess, increase or change medications, call the palliative team |
| Terminal agitation | Check bladder, bowel, pain; medicate as ordered; ensure safety |
| Distressing secretions | Reposition, anticholinergic, reassure family |
| Family conflict about treatment | Arrange a family meeting with the team; refer to ethics if needed |
| Prolonged or complicated grief in family members | Refer to bereavement or mental health services |
| Staff moral distress | Debriefing, support |
- Palliative care can start at any stage of serious illness; hospice is for limited prognosis and comfort-focused care
- Cheyne-Stokes breathing, mottled cool extremities, weak irregular pulse, falling BP, decreased urine output, decreasing consciousness = death approaching
- Mottling and cold extremities come from peripheral vasoconstriction and reduced blood flow
- Hearing may be the last sense lost — keep talking to the client and explain care
- Death rattle: reposition and anticholinergics; avoid deep suctioning; explain to family
- Opioids relieve dyspnea and pain; sedation from adequate symptom relief is acceptable (double effect)
- Temperature becomes irregular as hypothalamic control fails
- Oral care with water or saline and soft swabs, not harsh antiseptics
- Kübler-Ross: denial, anger, bargaining, depression, acceptance — not a fixed sequence
- Listen and accept feelings without judgment
- Post-mortem: body supine with head raised, close eyes, dentures in, leave tubes if coroner/autopsy case, ID tags, family time, respect culture
- Rigor mortis starts about 2–4 hours after death — position early
Country Notes
United States
- The Medicare hospice benefit requires a physician's certification of a prognosis of 6 months or less if the illness runs its usual course and an election of comfort-focused care.
- Hospitals must notify the regional organ procurement organization of every death or imminent death so that donation can be evaluated; nurses should not approach families about donation unless trained and designated.
- POLST-type programs and the rules for who may pronounce death vary by state.
Philippines
- Families are usually closely involved in end-of-life decisions, and many prefer to care for the dying person and hold a wake at home; ask about the family's wishes early and help plan discharge home when desired.
- Filipino Muslim families commonly wish burial as soon as possible, ideally within 24 hours; coordinate release of the body and documents promptly for any family requesting early burial.
- Catholic families may request a priest for the Anointing of the Sick; facilitate spiritual care for all faiths.