Death, Dying & End-of-Life Care

Kübler-Ross Stages of Grief (DABDA)

The five stages are NOT linear — patients move back and forth, and not everyone reaches acceptance.

1. Denial

Patient: "This can't be happening." May avoid discussing diagnosis, seem cheerful or detached. Nurse: Allow denial as a coping mechanism — don't force reality. Be present, provide factual information gently when ready. Don't argue or correct.

2. Anger

Patient: "Why me?" May lash out at nurses, family, or God. Hostility is common. Nurse: Do NOT take anger personally. Allow expression of emotions. Validate: "I can see you're frustrated — that makes sense."

3. Bargaining

Patient: "If I can just live to see my daughter graduate..." Often involves making deals with a higher power. Nurse: Listen without judgment. Allow spiritual expression. Chaplain referral if desired. Acknowledge hope without making false promises.

4. Depression

Patient: Sadness, withdrawal, crying, silence, loss of interest. Nurse: Be present — silence and sitting with the patient is often the most therapeutic intervention. Do NOT say "cheer up." Validate: "It's okay to feel sad." Assess for suicidal ideation if concerns arise.

5. Acceptance

Patient: Peaceful acknowledgment. May begin planning, saying goodbyes, or becoming more quiet and reflective. Not necessarily "happy" — just at peace. Nurse: Support the patient's decisions. Honor wishes. Continue comfort care. The family may still be in earlier stages — support them too.

Types of Grief

Not all grief looks the same — know the different types.

Anticipatory grief

Grieving BEFORE the actual loss occurs. Begins when a terminal diagnosis is given. Example: family of an ALS patient beginning to grieve as the disease progresses, even though the patient is still alive.

Normal (uncomplicated) grief

Expected emotional, physical, and behavioral responses to loss. Resolves over time without professional intervention. Example: sadness, crying, difficulty concentrating, appetite changes, sleep disturbance — gradually improving over weeks to months.

Complicated (prolonged) grief

Intense grief that does NOT improve over time (persists >12 months). May interfere with daily functioning. Requires professional help. Example: a person unable to return to work or perform ADLs a year after a loved one's death.

Disenfranchised grief

Grief that is not openly acknowledged or socially supported. The loss is not recognized by others. Example: grief after miscarriage, loss of a pet, death of an ex-spouse, death of a same-sex partner in an unsupportive environment.

Hospice vs Palliative Care

Both focus on comfort — but they differ in timing and eligibility.

Goal

Palliative: Comfort, quality of life, symptom management. Hospice: Comfort, dignity, quality of remaining life.

When?

Palliative: At ANY stage of serious illness — can begin at diagnosis. Hospice: Terminal prognosis of ≤6 months. Patient has chosen to stop curative treatment.

Curative treatment?

Palliative: YES — can be given alongside curative treatment. Hospice: NO — curative treatment is discontinued. Focus shifts entirely to comfort.

Setting

Palliative: Hospital, clinic, home, long-term care — anywhere. Hospice: Home (most common), hospice facility, hospital, or nursing home.

Coverage

Palliative: Insurance varies. Hospice: Medicare Hospice Benefit covers medications, equipment, nursing, aide, counseling, and bereavement support for family (up to 1 year after death).

Bereavement support

Palliative: Not typically included. Hospice: Included — grief counseling for family after death.

Key Hospice Principles

• Patient autonomy — the patient's wishes guide ALL care decisions
• Comfort is the priority — symptom management (pain, dyspnea, nausea, anxiety)
• Interdisciplinary team: physician, nurse, social worker, chaplain, aides, volunteers, bereavement counselor
• Family is the unit of care — hospice supports the entire family, not just the patient
• Death is viewed as a natural process — neither hastened nor postponed
• The patient can revoke hospice at any time and return to curative treatment

Advance Directives

Legal documents that ensure the patient's wishes are honored when they can no longer speak for themselves.

Types of Advance Directives

Living Will

Written document specifying what medical treatments the patient DOES or DOES NOT want if they become incapacitated. May include preferences on ventilators, tube feeding, dialysis, CPR, antibiotics, transfusions. Varies by state law.

Healthcare Power of AttorneyHealthcare Proxy

Designates a specific person to make medical decisions on the patient's behalf. Activates ONLY when the patient loses decision-making capacity. The proxy makes decisions based on what the patient WOULD want, not their own preferences.

DNR (Do Not Resuscitate)

Instructs providers NOT to perform CPR (chest compressions, intubation, defibrillation) if the patient's heart stops. Requires a physician's order. Does NOT mean "do not treat" — the patient still receives all other appropriate care. Only applies to cardiac/respiratory arrest.

Nursing Responsibilities

• Ask about advance directives on admission — per the Patient Self-Determination Act (PSDA), all healthcare facilities must ask patients if they have advance directives and provide information about them
• The nurse does NOT create or witness the documents in most states (notary or specific witnesses required by state law)
• The nurse DOES ensure the advance directives are in the patient's chart and that the healthcare team is aware
• Advance directives can be changed or revoked at ANY time while the patient is competent
• If there is no advance directive and the patient is incapacitated → the next of kin makes decisions (spouse → adult children → parents → siblings, varies by state)
• A verbal request overrides a written advance directive if the patient is competent at the time. Example: a patient with a DNR says "I changed my mind, save me" → you perform CPR.

Signs of Impending Death

Knowing what to expect helps nurses prepare families and provide appropriate care.

Weeks Before Death

• Increased fatigue and sleep
• Decreased appetite and fluid intake (the body is shutting down — do NOT force food/fluids)
• Withdrawal from social interaction
• Increased confusion or "terminal restlessness"

Days to Hours Before Death

• Cheyne-Stokes respirations — irregular breathing with alternating periods of deep breathing and apnea (no breathing). This is a late sign.
• Death rattle — gurgling or rattling sound from secretions pooling in the throat (patient cannot cough or swallow). Reposition to side, gentle suctioning if needed. More distressing to family than to patient.
• Mottling — bluish-purple blotchy discoloration of the skin, starting at the feet and knees and moving upward (indicates decreasing circulation)
• Cool, clammy extremities — blood is shunting to vital organs
• Decreased urine output → anuria — kidneys are shutting down. No urine output for 3+ days may indicate active dying.
• Loss of gag and swallow reflexes — discontinue oral medications and food. Switch to alternative routes or comfort-only measures.
• Fixed, dilated pupils
• Jaw relaxation, mouth may fall open
• Changes in vital signs: decreasing BP, weak/thready pulse, irregular heart rate

Teaching for Families

• These changes are the body's natural process of shutting down — they are expected
• Hearing is believed to be the LAST sense to go — continue talking to the patient, even if they appear unresponsive
• Decreased appetite is normal — do NOT force food or fluids (can cause aspiration, edema, and discomfort)
• The "death rattle" sounds worse than it feels — the patient is typically not aware of it
• Encourage family to touch, hold hands, speak softly, play music, and be present

Comfort Measures & Symptom Management

The priority in end-of-life care is COMFORT — not cure.

Pain

Administer pain medication on a scheduled basis — do NOT wait for the patient to request it. Opioids are appropriate and should NOT be withheld due to fear of addiction (this is a non-issue at end of life). Around-the-clock dosing prevents breakthrough pain. Assess using appropriate pain scale.

Dyspnea

Morphine is first-line for dyspnea at end of life (reduces air hunger and anxiety). Elevate HOB. Fan directed at the face. Oxygen may or may not help (comfort, not necessarily for SpO₂ target). Minimize exertion.

Nausea/Vomiting

Antiemetics (ondansetron). Small amounts of preferred foods if tolerated. Oral care. Positioning.

Anxiety/Restlessness

Calm environment, dim lighting, soft music. Anxiolytics (lorazepam). Presence of family/loved ones. Gentle touch. Address spiritual concerns.

Secretions (death rattle)

Repositioning to the side (gravity drainage). Gentle oral suctioning. Glycopyrrolate or atropine drops (dries secretions). Educate family that the sound is more distressing to them than to the patient.

Dry mouth

Oral swabs with water, lip balm, ice chips if patient can swallow. Avoid lemon-glycerin swabs (drying). Mouth care every 1–2 hours.

Skin care

Repositioning for comfort (not necessarily on a strict q2h schedule if it causes distress). Gentle skin care. Pressure-relieving surfaces. Keep linens smooth and dry.

Therapeutic Communication with Dying Patients & Families

What to say, what NOT to say, and when silence is the best response.

Therapeutic Responses (DO)

• "I'm here for you." — Simple presence is powerful.
• "Tell me what you're feeling." — Open-ended, invites expression.
• "It's okay to feel angry/sad/scared." — Validates emotions.
• "What matters most to you right now?" — Centers the patient's values.
• Silence — Sitting with a patient in silence, holding their hand, is therapeutic. You do NOT always need to fill the silence with words.
• "I'll stay with you." — Addresses fear of dying alone.
• "Would you like me to call your chaplain/spiritual advisor?" — Addresses spiritual needs.

Non-Therapeutic Responses (DO NOT)

• "Everything will be okay." — False reassurance. You don't know that.
• "I know how you feel." — You don't. Every person's experience is unique.
• "It's God's plan" or "They're in a better place." — Imposes your beliefs. May not match the patient's/family's spiritual views.
• "At least they lived a long life." — Minimizes the grief.
• "You need to be strong for your family." — Dismisses the person's right to grieve.
• "Don't cry." — Suppresses normal, healthy grieving.
• Changing the subject — Communicates that death is too uncomfortable to discuss.

Postmortem Care

Respectful, dignified care after death.

Nursing Actions After Death

1. Verify death — the physician or authorized provider pronounces death and documents the time
2. Notify the family — if not already present. Allow private time with the body.
3. Remove all tubes and lines — per facility policy (unless it's a coroner's case — then leave everything in place)
4. Position the body supine with arms at the sides or across the abdomen. Place a pillow under the head (prevents pooling of blood in the face).
5. Close the eyes and mouth — may use a rolled towel under the chin to keep the mouth closed
6. Bathe the body — clean gently, place clean linens on the bed
7. Apply identification tags — per facility policy (wrist and toe tag)
8. Handle belongings — inventory personal items, document, and give to family or secure per policy
9. Respect cultural and religious practices — some cultures/religions have specific rituals for handling the body (washing, positioning, prayer). ASK the family.
10. Document: time of death, who was notified, condition of the body, disposition of belongings, family response

Special Considerations

• Coroner's cases: If the death is unexpected, suspicious, traumatic, or occurs within 24 hours of admission or surgery → do NOT remove tubes, lines, or drains. The body is a legal case. Contact the coroner.
• Organ donation: If the patient is an organ donor → contact the organ procurement organization (OPO) BEFORE any postmortem care. Time is critical for organ viability.
• Allow family time — there is no rush. Let them grieve, hold the patient's hand, say goodbye at their own pace.

Ethical Principles

These principles guide every end-of-life decision — and every nursing action.

Autonomy

The patient's right to make their own decisions. A competent patient refuses further treatment — even if the nurse disagrees, the patient's decision is honored. Informed consent is rooted in autonomy.

Beneficence

The duty to do good — act in the patient's best interest. Providing pain medication for comfort. Advocating for the patient's wishes. Ensuring comfort measures are in place.

Nonmaleficence

The duty to do no harm. Not performing unnecessary procedures that would cause suffering without benefit. Not continuing aggressive treatment that prolongs dying.

Justice

Fair and equal treatment for all patients. Every patient receives the same standard of end-of-life care regardless of background, diagnosis, age, or social status.

Fidelity

Faithfulness — keeping promises and commitments. Following through on the patient's advance directive. If you promised to be there, be there.

Veracity

Truth-telling — honesty with patients and families. Providing honest information about prognosis. Not giving false hope. Answering questions truthfully while being sensitive.

The Principle of Double Effect

An action with both a good effect (relieving suffering) and a potentially bad effect (hastening death) is ethically permissible IF:

1. The action itself is not inherently wrong (giving pain medication is appropriate nursing care)
2. The INTENT is the good effect (comfort), not the bad effect (death)
3. The good effect is not achieved BY MEANS of the bad effect
4. There is a proportionate reason for allowing the bad effect (unbearable suffering justifies the risk)

Frequently Asked Questions

Common student questions on this topic.

Quick-Reference Cheatsheet

Every key point from this guide on a single printable page.