13.2 Comfort & End-of-Life Care
Key Takeaways
- Palliative care can begin at any stage of serious illness alongside curative treatment; hospice requires a prognosis of 6 months or less if the illness runs its natural course and focuses on comfort rather than cure
- First-line treatment for dyspnea at end of life is low-dose oral or parenteral morphine; a bedside fan and upright positioning help as much as oxygen in the non-hypoxic patient
- Death rattle (retained respiratory secretions) is managed with repositioning and anticholinergics such as glycopyrrolate or scopolamine — it rarely distresses the patient, so family education is the priority; avoid deep suctioning
- A POLST form translates a seriously ill patient's wishes into portable medical orders; unlike an advance directive, it is actionable by EMS and across care settings
- Nurses must notify the organ procurement organization of every death or impending death — the decision to approach the family about donation belongs to trained requestors, not the bedside nurse
Palliative Care vs. Hospice
Confusing these two is the most common exam error in this content area. All hospice care is palliative, but not all palliative care is hospice.
| Feature | Palliative Care | Hospice |
|---|---|---|
| Timing/eligibility | Any stage of serious illness, from diagnosis onward | Terminal illness with a prognosis of 6 months or less if the disease runs its expected course (physician certification required) |
| Concurrent curative treatment | Yes — can be provided alongside chemotherapy, dialysis, surgery, and other disease-directed therapy | Generally no — the focus shifts to comfort; treatments are for symptom relief, not cure |
| Goal | Improve quality of life and relieve suffering during serious illness | Comfort, dignity, and support through the dying process and bereavement |
| Payment model | Billed like other specialty care | Medicare Hospice Benefit (and Medicaid/private equivalents) — a per-diem model covering the interdisciplinary team, medications, equipment, and bereavement support |
Goals-of-care conversations should happen early and be revisited as conditions change. Practical techniques:
- Use ask-tell-ask: ask what the patient understands, tell them information in plain language, then ask them to say it back in their own words
- For breaking bad news, the SPIKES protocol (Setting, Perception, Invitation, Knowledge, Empathy, Strategy/Summary) provides a reliable structure
- Ask open questions: 'What matters most to you right now?' and 'What are you hoping for, and what worries you?'
- Document the conversation and ensure the resulting wishes are converted into actual orders — a verbal wish without a written order does not protect the patient at 2 a.m.
A patient with advanced heart failure asks whether she qualifies for hospice. Which criterion must be met for hospice eligibility under the Medicare Hospice Benefit?
Symptom Management at End of Life
Pain
Pain is treated aggressively with opioids, titrated to comfort. Pure opioid agonists (morphine, fentanyl, hydromorphone) have no ceiling dose for analgesia. Two exam anchors: addiction is not a relevant concern in the dying patient, and the principle of double effect ethically supports giving medication to relieve suffering even if a foreseeable (but unintended) side effect could shorten life — the intent is comfort. Respiratory depression from appropriately titrated opioids is rare; untreated pain is far more likely to cause tachypnea and distress.
Dyspnea
The most frightening symptom for patients and families. First-line pharmacologic treatment is low-dose oral or parenteral morphine, which reduces the subjective sensation of breathlessness. Non-pharmacologic measures matter equally: upright positioning, a cool bedside fan directed at the face (stimulates the trigeminal nerve and eases air hunger), a calm room, and pacing of activity. Oxygen helps only if the patient is hypoxic — it is not required for comfort in a patient with normal saturation.
Secretions (Death Rattle)
As the gag and swallow reflexes fade, pooled oropharyngeal secretions produce a rattling sound with respiration. Management:
- Reposition the patient on the side with the head elevated to drain secretions
- Anticholinergic agents such as glycopyrrolate, scopolamine patch, or sublingual atropine reduce new secretion production (they do not dry what is already pooled)
- Avoid deep suctioning — it is uncomfortable, increases secretions, and provides only brief relief
- Educate the family: the sound is distressing to listeners, but the patient is usually obtunded and not suffering
Nausea
Match the antiemetic to the cause: opioids (haloperidol or metoclopramide), constipation (bowel regimen), increased intracranial pressure (dexamethasone), or gastric stasis (prokinetics). Small sips, oral care, and removing food smells are simple effective measures.
Terminal Agitation and Restlessness
Before sedating, rule out reversible causes: urinary retention (straight catheterize), constipation, hypoxia, uncontrolled pain, and medication effects. If delirium persists near death, haloperidol is first-line; benzodiazepines (lorazepam, midazolam) are added for refractory agitation — paradoxically, benzodiazepines alone can worsen delirium.
The Dying Process — Preparing Families for What They Will See
Families cope better when changes are predicted rather than discovered. Teach them to expect: increased sleeping and withdrawal from conversation; decreased interest in food and fluids (do not force intake — dehydration at end of life is not painful and artificial hydration can worsen secretions and edema); cool, mottled (bluish, blotchy) extremities starting at the feet and moving upward; irregular breathing including Cheyne-Stokes respirations (crescendo-decrescendo breathing with apneic pauses); decreased, dark urine output; restlessness or picking at bedcovers; and a final period of unresponsiveness in which hearing is believed to remain intact — encourage families to keep talking to the patient.
The daughter of an actively dying hospice patient is upset by a loud rattling sound with each of her mother's breaths and asks the nurse to suction her. Which response is most appropriate?
Advance Directives and POLST in Practice
- Living will: a written document describing treatments the patient would or would not want (ventilation, tube feeding, resuscitation) if they lose decision-making capacity
- Durable power of attorney for health care (health care proxy): names a surrogate decision-maker; generally more flexible than a living will because the surrogate responds to real circumstances
- Do-not-resuscitate (DNR) / allow-natural-death order: a physician order, not a patient document — no CPR if arrest occurs; all other care continues unless otherwise specified
- POLST (Physician Orders for Life-Sustaining Treatment) — also called MOLST or POST in some states: a brightly colored medical order form that converts the wishes of a seriously ill or frail patient into actionable, portable orders (resuscitation status, level of medical intervention, artificial nutrition). Unlike an advance directive, a POLST is honored by emergency medical services and travels with the patient across hospitals, nursing homes, and home. Advance directives are appropriate for all adults; POLST is for those at risk of a life-threatening event.
Postmortem Care
Care of the body begins at pronouncement (per facility policy and state law; nurses may pronounce death in hospice settings in many states). Key elements:
- Provide family time with the body before and after preparation; never rush them
- Straighten the body, close the eyes, place a pillow under the head, and insert dentures if available — rigor mortis begins within 2-4 hours, so position promptly
- Remove or cap tubes, lines, and drains per policy — devices are generally left in place if the death is referred to the medical examiner or an autopsy is planned
- Bathe and dress the body, managing drainage with pads; identification tags are placed per policy
- Cultural and religious practices take priority: in Islam the body is washed by same-gender family members and buried promptly facing Mecca; in Judaism the body is not left alone (a shomer watches) and autopsy and cremation are traditionally avoided; in some Buddhist and Hindu traditions the family wishes to wash or remain with the body. Ask the family what matters rather than assuming from a label.
- Organ and tissue donation: federal law requires that every death or imminent death be referred to the local organ procurement organization (OPO). The bedside nurse's duty is the timely referral and preserving option viability — the actual request for donation is made by a trained OPO requestor, never by the nurse independently. Tissue donation (corneas, skin, bone, heart valves) is possible even when organ donation is not.
Grief, Families, and Nurse Self-Care
Know Kübler-Ross's five stages — denial, anger, bargaining, depression, acceptance — while remembering they are not linear: people move back and forth or skip stages entirely, so never correct a family's 'stage.' Grief varies widely by culture: some families wail loudly and gather in large numbers; others are stoic and private. Both are normal. Support grieving families with presence, listening, simple honest language ('died' rather than euphemisms when clarity is needed), and bereavement resources; hospice includes family bereavement follow-up for 13 months after the death.
Nurses who repeatedly witness suffering and death are vulnerable to moral distress (knowing the right action but being constrained from taking it — for example, continuing aggressive treatment the nurse believes is futile) and compassion fatigue. Protective practices include debriefing after difficult deaths, ethics committee consults for value conflicts, peer support, boundaries, and using — not ignoring — institutional resources such as employee assistance programs. Recognizing moral distress in yourself is professional strength, not weakness, and it is a testable part of the ANCC professional role domain.
A home hospice patient with end-stage chronic obstructive pulmonary disease wants emergency medical services to honor her wish not to be resuscitated or intubated. Which document is most appropriate for the nurse to discuss with the provider?
A patient on the medical-surgical unit has just died after a massive stroke. The family is at the bedside. What is the nurse's priority action regarding organ and tissue donation?