End of Life, Hospice, Pain and Sleep

In depth

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Palliative care, hospice and the nurse

Palliative care relieves suffering and improves quality of life for a client with serious illness and the family, at any stage and alongside treatment aimed at the disease (Open RN 17.4; CaringInfo). Hospice is palliative care for the period closest to death: in the US a client can enroll when a physician believes the prognosis is about 6 months or less if the illness follows its usual course, and treatment aimed at curing the terminal illness stops (CaringInfo; MedlinePlus). Most hospice care is given at home, with a team of physician, nurses, aides, social worker, chaplain or counselor, volunteers and therapists, and someone on call around the clock. A client may leave hospice and return later if still eligible. Bereavement support for the family runs about a year after the death: the Medicare hospice rule says up to 1 year (42 CFR 418.64) and CaringInfo says up to 13 months.

Withdrawing a treatment is ethically equivalent to withholding it, because both aim to relieve suffering (NCI PDQ Last Days). The ICU End of Life page covers withdrawal of ventilation, the rule of double effect and family meetings in detail; the Legal and Ethical Terms page covers advance directives, POLST and DNR orders.

NCLEX-PN items put the LPN/VN at the hospice bedside or in long-term care: collecting focused data, giving prescribed scheduled and as-needed doses, reinforcing the teaching the RN began, and reporting changes such as new pain, constipation without an as-needed laxative ordered, or a distressed family member. The 2026 PN plan allows withholding a dose for an adverse effect and maintaining pain devices such as PCA; adjusting a dose, starting a new treatment or first-time teaching belongs to the RN or provider (see NCLEX-PN: The LPN/VN Role).

Recognizing that death is near

NCI PDQ separates early signs, which often appear more than a week before death and predict timing only moderately (lower consciousness, very low performance status, trouble swallowing liquids), from late signs that are concentrated in the last 3 days. The late signs are specific but have low sensitivity, so their absence does not rule out impending death: radial pulselessness, breathing with movement of the jaw, urine output of 200 mL a day or less, Cheyne-Stokes breathing, death rattle, apnea periods, peripheral cyanosis and nonreactive pupils. Median times from onset to death in one cohort were about 1 hour for cyanosis, 2.5 hours for jaw breathing and radial pulselessness, and 23 hours for the rattle. Blood pressure and oxygen saturation fall near death, yet many clients have normal vital signs even in the last 12 hours.

Open RN 17.5 describes the imminent phase, usually within 24 hours before death: cool, clammy, mottled skin, rapid or irregular pulse, inability to turn in bed, confusion or restlessness, rising respiratory rate with Cheyne-Stokes or noisy breathing, and scant dark urine. Vital signs are usually no longer taken, because they add nothing to comfort. MedlinePlus adds what families see: more sleep, less talk, talking to people who are not there or have died, loss of bladder or bowel control, and moaning. Brief lucid moments are common and are part of dying, not a sign of recovery (NCI).

Clients may be aware of others even when they cannot respond, so families are encouraged to talk to them as if they can hear, hold hands and keep familiar voices and music nearby (NCI; MedlinePlus). A soft light is kinder than darkness when vision blurs.

Secretions, restlessness, breathlessness and intake

Death rattle is the sound of secretions pooling in the throat of a client too weak to clear them. It occurs in roughly 50% to 60% of dying clients in the last days, and families may hear it as choking. Turning onto the side and raising the head help; routine deep suctioning triggers gagging and is not advised. Trials of scopolamine, atropine, glycopyrrolate and hyoscine have been negative; glycopyrrolate crosses into the brain least and is often preferred when a drug is used. More than 500 mL of IV fluid in the last week was linked to more rattle, so IV fluids are reviewed with the client’s goals (NCI PDQ Last Days). Explaining the sound is the intervention families remember.

Terminal delirium occurs before death in 50% to 90% of clients (NCI). Look first for causes that can be fixed within the goals of care: pain, a full bladder, constipation or impaction, and drugs such as opioids, benzodiazepines, anticholinergics and steroids. Keep the room calm, quiet and softly lit, and let family stay. Haloperidol is the usual first drug; a benzodiazepine may be added for agitation that does not settle, at the price of deeper sedation; restraints are minimized; palliative sedation may be warranted in intractable delirium (NCI). Open RN 17.4 names haloperidol and chlorpromazine for delirium.

Breathlessness: raise the head of the bed, use a fan toward the face, open a window, keep the room cool and calm, and give the prescribed opioid; small doses ease air hunger with little effect on breathing (Open RN 17.4). NCI does not support routine oxygen for clients without documented low oxygen levels.

Most dying clients lose interest in food and fluids. In a randomized trial of 129 home-hospice clients, 1 L of fluid a day did not change survival, symptoms, quality of life or delirium, and in another study volumes over 1 L a day were linked with more bronchial secretions (NCI). Artificial nutrition has no known benefit at this stage and may raise the risk of aspiration and infection. Ask the family what they hope fluids will do, then teach mouth care, sips and ice chips for thirst, and lip balm; offer tastes the client wants, never forced, since forcing food adds discomfort (Open RN 17.4; MedlinePlus).

Opioid principles

Continuous pain is treated with scheduled doses. Once pain is stable, the 24-hour need is converted to a long-acting opioid, and an immediate-release opioid stays available for breakthrough pain, a temporary flare in otherwise controlled pain (NCI PDQ Cancer Pain). Long-acting doses every 12 hours gave efficacy similar to scheduled short-acting doses. The nurse treats a flare with the prescribed rescue dose rather than waiting for the next scheduled dose, then follows up within an hour (Open RN 11.3). Frequent rescue doses, or repeated increases without relief, are reported so the plan can change.

Respiratory depression is extremely rare when opioids are started and titrated carefully; risk factors include sleep apnea, obesity and other sedating drugs, and it is greatest at the start or after a dose increase. Sedation usually comes first (Open RN 11.4). If an opioid is the likely cause (pinpoint pupils with sedation), naloxone is titrated slowly so pain control is not lost and withdrawal is not precipitated (NCI); adult doses are on the High-Alert Medications page. Several studies found no link between high-dose opioids and survival in hospice and palliative care (NCI PDQ Last Days).

Opioid-induced neurotoxicity covers sedation, hallucinations, delirium, myoclonus, seizures and hyperalgesia, in which pain spreads or rises with each dose increase and light touch hurts. It developed in 15% of 390 clients in one cancer center. Risk rises with morphine or codeine, older age, kidney dysfunction, infection and dehydration, because morphine metabolites accumulate when the kidneys fail. The fix is a lower dose or a different opioid, not more of the same one, so the nurse holds further escalation and reports (NCI PDQ Cancer Pain).

Side effects and the bowel regimen

Constipation affects 40% to 95% of clients on opioids, can begin after one dose, and does not fade with tolerance. A bowel regimen starts when the opioid is prescribed and continues as long as it is taken, titrated to bowel function; the laxative is titrated to bowel function, not to the opioid dose (NCI PDQ Gastrointestinal Complications). A stimulant laxative such as senna or bisacodyl is the backbone; a softener such as docusate is of limited use alone and adds little when combined. Bulk-forming fiber is a poor choice: methylcellulose is not advised for opioid-induced constipation, bulk agents need plenty of fluid that dying clients rarely drink, and they worsen an obstruction. Open RN 11.4 names a stool softener such as docusate as the typical first step in a bowel program and cautions against long-term stimulants. NCI says a scheduled stimulant such as senna starts with the opioid, that a softener adds no further benefit, and that prolonged stimulant use can cause laxative dependency. Both are cited; if an exam item keys docusate as the first step, it follows the Open RN wording.

Liquid stool leaking around a hard mass suggests impaction, not diarrhea. Peripherally acting opioid antagonists (methylnaltrexone, naloxegol, naldemedine) are for constipation that laxatives have not relieved and are contraindicated when obstruction is suspected.

Nausea affects up to two thirds of clients receiving opioids; NCI says tolerance may develop and symptoms should resolve within 1 week, while Open RN 11.4 says tolerance develops within a few days. Sedation and drowsiness are common but typically transient (NCI). Urinary retention can follow spinal opioids (Infumorph label).

Fentanyl patch safety

The transdermal system is only for opioid-tolerant clients: for a week or longer, at least 60 mg of oral morphine a day, 30 mg of oral oxycodone or 8 mg of oral hydromorphone, or an equivalent. It is contraindicated in opioid-naive clients and for acute, intermittent, postoperative or mild pain, because deaths have followed (FDA label, revised 12/2025).

Heat applied over the patch increases absorption and has caused fatal overdoses: heating pads, electric blankets, heat or tanning lamps, sunbathing, hot baths, saunas, hot tubs and heated water beds are all named. Fever can raise serum fentanyl by about one third at 40 °C, so a febrile client is watched for sedation and slow breathing, the fever is reported for a possible dose reduction, and chills are met with plain blankets. Drugs that inhibit CYP3A4, such as some macrolides, azole antifungals and ritonavir, can raise levels dangerously. Children and adults have died from contact with discarded patches; if a patch sticks to someone else, remove it, wash the skin with water and get help (FDA label).

PCA and spinal pumps

Patient-controlled analgesia lets the client give a set IV dose by button, with a lockout interval and an hourly limit programmed into the pump; some pumps add a small continuous (basal) dose. Only the client presses the button, not a family member and not the nurse, because a client too sleepy to press it is protected from more drug. Incoming and outgoing nurses check the settings, the amount given during the shift and the amount left, and record them (Open RN 11.4). Sedation is assessed before breathing slows.

Implanted intrathecal pumps are considered for refractory cancer pain when life expectancy is more than about 3 months (NCI). Inflammatory masses can form at the catheter tip during continuous intrathecal infusion and have caused serious neurologic impairment, including paralysis, so clients are watched for any new neurologic sign; new leg weakness or numbness, with or without new urinary retention, is reported at once rather than charted as disease progression (Infumorph label, 12/2025). After a first intrathecal or epidural morphine dose, respiratory depression can occur up to 24 hours later, so the client is observed in a monitored setting for at least 24 hours; urinary retention may last 10 to 20 hours after one dose (Infumorph label). The FDA has also warned about device failures and dosing errors with implanted pumps (Open RN 11.4).

Assessing pain when the client cannot report it

Self-report is the standard, but it is unreliable in advanced dementia, delirium, sedation, learning disability and in young children. NCI PDQ lists direct observation, family or caregiver report and the response to an analgesic trial as the alternatives, and recommends observational tools such as PAINAD for advanced dementia. Open RN 11.3 describes PAINAD as five observed behaviors, each scored 0 to 2: breathing independent of vocalization, negative vocalization, facial expression, body language and consolability, for a total of 0 to 10. Asking family which behaviors mean pain for this person keeps pain from being missed.

Treat, then reassess with the same tool so scores can be compared, and document the behavior, the intervention and the response.

Non-drug comfort for pain and nausea

Open RN 11.4 lists heat (vasodilation; 5 to 20 minutes as tolerated), cold (vasoconstriction and numbing; no longer than 20 minutes), massage (benefit from 3 to 5 minutes), TENS, distraction, relaxation breathing, meditation, prayer, imagery, music, positioning, reducing stimuli and avoiding sudden movement, plus acupuncture, acupressure, biofeedback, aromatherapy, tai chi, yoga and physical therapy. They are written into the care plan and judged against the client’s comfort goal. NCI notes that pain and function may improve with physical or occupational therapy. Never apply heat over a fentanyl patch.

For nausea, NCI lists diet changes, acupressure, acupuncture, relaxation, guided imagery, hypnosis and behavioral therapy; for anticipatory nausea before chemotherapy, relaxation with imagery, hypnosis and systematic desensitization are the recommended treatments. Evidence for ginger is conflicting. Open RN 17.4 adds room-temperature food, avoiding strong odors and heavy meals, and music. These measures add to the prescribed antiemetic; herbal products are checked with the provider for interactions.

Sleep and insomnia

In the hospital, bundle care so clients can complete sleep cycles of at least 90 minutes, dim or use red lights at night, cut noise (quiet hours, fix squeaky equipment, lower voices), offer earplugs, eye masks or white noise, keep home bedtime routines (Open RN 12.3). Adults need about 7 to 8 hours (Open RN).

Healthy sleep habits (NHLBI): a cool, quiet, dark room without TV or devices; the same sleep and wake times, weekends included; no caffeine, nicotine or alcohol close to bedtime; exercise at least 5 to 6 hours before bed; avoid naps, especially in the afternoon; regular meals without late dinners; fewer fluids near bedtime; a wind-down routine.

Chronic insomnia: the AASM (Edinger 2021) strongly recommends multicomponent CBT-I and suggests stimulus control, sleep restriction and relaxation as single therapies, but suggests not using sleep hygiene alone. Stimulus control means going to bed only when sleepy, getting up when unable to sleep and using the bed only for sleep and sex. Sleep restriction sets time in bed to the average sleep time in the client’s diary with a fixed wake time, then lengthens it as sleep improves; going to bed earlier to catch up makes insomnia worse. The AASM 2026 combination guideline (Buysse) suggests CBT-I plus medication over medication alone, and CBT-I alone over adding a drug.

Older adults: the AGS 2025 Beers alternatives list says to avoid benzodiazepines, Z-drugs, first-generation antihistamines such as diphenhydramine (in many over-the-counter PM products), tricyclics and barbiturates for sleep, because they are sedating or anticholinergic. Look for causes first (pain, nocturia, sleep apnea, drugs, the environment); CBT-I is first line; evidence is insufficient for melatonin, trazodone or mirtazapine, and supplement contents are not guaranteed.

Cancer-related fatigue

Cancer-related fatigue is a distressing, persistent physical, emotional or mental exhaustion out of proportion to activity, and rest does not fully relieve it (NCI PDQ Fatigue). Look for contributors that can be treated: anemia, pain, depression or anxiety, poor sleep or sleep apnea, low thyroid function, poor intake or dehydration, deconditioning, and sedating drugs such as opioids, benzodiazepines and antihistamines.

Activity helps most: NCI suggests 3 to 5 hours a week of moderate activity the client enjoys, built up gradually; aerobic, resistance and combined training, yoga and tai chi have all reduced fatigue in trials. Schedule important activities for times of least fatigue, drop nonessential ones, take short rests and keep up fluids and food. CBT-I improved sleep quality in one trial but did not significantly change fatigue. Open RN 17.4 calls fatigue the most disabling symptom in palliative care and lists energy conservation as its main non-drug measure.

Death, postmortem care and donation

Clinical death is the end of circulation, heartbeat and breathing; for a client with a DNR order, CPR is not started. To confirm death, the nurse listens to the apical pulse for one full minute, per agency policy on who may pronounce. The note records the date and time, who was present, when the provider was called, the lack of response, the absent apical pulse and transport arrangements (Open RN 17.5).

Postmortem care (Open RN 17.5): explain the care privately and let the family view, touch and say goodbye in their own way without being rushed; honor cultural and religious practices, including who may care for the body; ask about funeral arrangements and follow county and agency rules on notifying the coroner. Remove tubes and equipment unless the coroner requires them left in. Bathe, dress and align the body, put dentures in, dress leaking wounds and use incontinence pads. After the family leaves, apply identification tags and transfer the body. Standard teaching adds placing the body supine with the head on a pillow, closing the eyes and mouth, and listing belongings for the family. Rigor mortis starts within hours, peaks at 12 to 18 hours and resolves by 48 hours.

Donation: hospitals must notify the organ procurement organization (OPO) in a timely way of every death and imminent death; the OPO decides medical suitability for organs, tissue and eyes, and only an OPO representative or a designated requester trained by the OPO approaches the family (42 CFR 482.45). Donation costs the family nothing (Open RN 17.5). The Legal and Ethical Terms page covers the 1-hour referral expectation and the Uniform Anatomical Gift Act; the ICU End of Life page covers brain death and donor care.

Grief and family support

Presence and active listening are the most important interventions: listen to the family’s stories, normalize grief, encourage cultural and religious customs, and refer to chaplains, counselors, support groups and hospice bereavement follow-up (Open RN 17.3). Report behavior that may endanger the client or family, depression, suicidal thoughts and grief that does not ease. The Therapeutic Communication page covers the Kübler-Ross reactions, anticipatory and disenfranchised grief, and prolonged grief disorder (12 months or more after a death in adults).

Exam pearls

• Dying client, gurgling: reposition and explain first; no deep suctioning, no extra IV fluid.
• Restless dying client: look for pain, a full bladder or impaction before sedating.
• Breakthrough pain now: give the ordered rescue dose now, not at the next scheduled time.
• More pain after each increase, jerking, light touch hurts: suspect neurotoxicity; hold escalation and report.
• Fentanyl patch plus fever or a heat source: remove the heat, watch breathing, report; never a heating pad.
• PCA: the family never presses the button.
• Nonverbal client grimacing after a fall: assume pain, use a behavioral tool, treat and rescore.
• Chronic insomnia: CBT-I, not a hypnotic and not sleep hygiene alone; no diphenhydramine for older adults.
• Cancer fatigue: not relieved by rest; moderate activity, key tasks at peak-energy times, energy conservation.
• After death: family time first, dignity, ID tags; the OPO, not the nurse, asks about donation.