Chapter 20
Providing End‑of‑Life Care
GOALS
After reading this chapter, you will have the information needed to:
- Define palliative care.
- Define hospice care.
- Discuss factors that influence a person's reaction to death.
- Discuss the five emotional stages of death.
- Describe what is important to persons who are dying.
- Describe your role in providing for the needs of a person who is dying.
- Recognize pain and non‑pain symptoms experienced at the end of life.
- Discuss the needs of the family and friends of someone who is dying.
- Recognize signs of approaching death.
- Recognize signs that death has occurred.
- Discuss the bereavement process for family, friends and staff.
After practicing the corresponding skill, you will have the information needed to:
- Provide postmortem care.
Key Terms
Scenario: Josie Miller, a resident with advanced heart and lung disease, chooses comfort‑focused care via an advance directive. Palliative (comfort) care aims to keep her comfortable without life‑prolonging measures.
Palliative Care
Palliative care is the active total care of patients whose disease is not responsive to curative treatment. The focus is controlling pain and other symptoms and addressing psychological, social and spiritual needs—the goal is the best possible quality of life for the dying person and family.
Hospice Care
Hospice is a philosophy and system of care delivered by interdisciplinary teams and volunteers. Central ideas: the dying person is an individual, should not be separated from family/support, and dying is a normal part of life. Emphasis is on comfort, pain relief, and practical/emotional/spiritual support, often at home, in nursing homes or hospice units.
Factors that Influence a Person's Reaction to Death
- Age: Death in later years is more expected/accepted than in youth; young deaths often feel tragic.
- Culture: Early messages about dying shape beliefs and comfort discussing death.
- Sense of fulfillment: Life purpose, unmet needs and regrets affect reactions.
- Religion: Beliefs about afterlife can comfort or cause dread.
- Family & friends: Connection, love and “unfinished business” influence peace or anger.
Understanding your own feelings about death helps you support others with listening, touch and calm presence.
Five Emotional Stages of Dealing with Dying
As identified by Dr. Elisabeth Kübler‑Ross, individuals may experience denial, anger, bargaining, depression and acceptance—moving back and forth among stages at their own pace. Your role is not to move a person through stages, but to listen, be kind and accept feelings.
- Denial: Protective shock/avoidance.
- Anger: Often masking fear, resentment, frustration—do not take personally.
- Bargaining: “Deals” for more time; opportunity to complete unfinished business.
- Depression: Grief for past losses and preparation for losses to come; withdrawal/detachment.
- Acceptance: Peaceful resignation; “letting go.”
What Is Important to Dying Persons?
- To be kept clean; to maintain dignity; to be free of pain, shortness of breath and anxiety.
- To have someone listen; to know what to expect; to have treatment preferences in writing.
- To have family present; to not die alone; to resolve unfinished business; to remember accomplishments.
- To trust clinicians; to feel comfortable with caregivers; to name a decision maker; to have finances in order; to keep humor.
Adapted from Steinhauser et al., JAMA 2000.
Providing for the Needs of the Dying Person
| Principle | What You Can Do |
|---|---|
| Communication | Talk about what the person wishes; respect silence; use eye contact and gentle touch; avoid whispering; do not isolate; check whether quiet time is desired. |
| Dignity | Treat as an individual; offer choices; respect religious/cultural practices and rituals; ensure preferences are in the care plan. |
| Independence | Enable the person to do as much as able; preserve control and pride. |
| Privacy | Provide care efficiently to allow private time with family/clergy. |
| Safety | Maintain a comfortable, lighted, ventilated, clean and neat room; continue standard safety measures. |
| Infection Control & Comfort | Practice Standard Precautions; meticulous skin care; meet nutrition/elimination needs; provide excellent mouth care for dryness. |
Common Symptoms Experienced at End of Life
Pain
Most common and feared—yet manageable. Ask regularly; observe nonverbal cues (crying, grimacing, resisting care). Coordinate care with pain medication for painful tasks.
Shortness of Breath
Distressing; relieve with positioning, relaxation and breathing techniques, increased air flow (fan); severe dyspnea may need medications and oxygen.
Pressure Ulcers
Reposition more often than every 2 hours as needed; ask about special mattresses.
Other common symptoms: decreased appetite, depression, constipation, nausea/vomiting and anxiety—focus on comfort.
Providing for the Needs of Family & Friends
Grief may begin before death and persist long after. Accept feelings without judgment; support with listening and physical comfort; offer food, fluids and rest; suggest social work support.
Encourage therapeutic touch and conversation with the dying person—even the unconscious may hear and feel. Invite sharing of memories, photos and life review.
Care for yourself: discuss feelings with supervisors/peers; attend memorials when appropriate.
Signs of Approaching Death (Box 20‑2)
- Elevated temperature; rapid/weak/irregular pulse; decreased blood pressure.
- Cool, moist, pale skin; cold/pale hands and feet; increased perspiration.
- Incontinence.
- Respiratory pattern changes: shallow breathing with periods of decreased respirations; airway “gurgling” from mucus.
- Loss of or drifting in/out of consciousness; loss of movement; loss of ability to communicate.
Signs that Death Has Occurred
- No pulse, respirations or blood pressure (confirmed by a physician).
- Fixed, dilated pupils.
- Areas of dark discoloration on the dependent side (lividity).
- Body becomes cold; possible bladder/bowel emptying.
- Rigid extremities 6–8 hours after death (rigor mortis).
Providing Postmortem Care
Respect family needs for time with the body before care begins; do not rush. Handle the body gently and respectfully; keep conversation professional. Follow employer policy and Skill 57 procedure. Be sensitive to roommates and others who may feel frightened or sad.
Bereavement for Family, Friends and Staff
Deaths in nursing homes affect staff and residents. Inform other residents appropriately; encourage sharing of memories and attendance at memorials. Acknowledge your own grief; seek support to continue providing compassionate care.