Symptom Management Guide

What Is Palliative Care?

Palliative care is medical care focused on relieving suffering and improving quality of life, rather than curing disease. It addresses physical, emotional, spiritual, and practical needs. Symptom management is a core component of hospice care.

Pain Is Not Inevitable

Modern hospice medicine has excellent tools to manage pain. Most end-of-life pain can be controlled. If pain is not well-managed, speak up—your hospice team can adjust medications and approaches.

Individual Responses Vary

Every person experiences symptoms differently. What works for one person may not work for another. The hospice team will work with you to find the best approach for your loved one.

Medication + Non-Drug Approaches

The best symptom management combines medications with non-pharmacological approaches: positioning, breathing techniques, massage, music therapy, emotional support, and environmental comfort.

Assessing Pain

Pain is what the patient says it is. Watch for signs: grimacing, restlessness, guarding body parts, moaning, or behavioral changes. Non-verbal patients may show pain through body tension or resistance to care.

Medication Options

Opioids (morphine, fentanyl) are the gold standard for severe pain. They can be given by mouth, patch, injection, or continuous IV. Many patients fear addiction—this is not a concern in hospice. The goal is comfort.

Adjusting Medications

Pain medications should be given on a regular schedule, not just when pain breaks through. Tell your nurse if pain isn't controlled. Doses can be adjusted. Side effects like constipation can also be managed.

Non-Medication Approaches

Heat or cold therapy, gentle massage, repositioning, relaxation techniques, distraction, guided imagery, and maintaining favorite activities all help. The hospice chaplain or social worker can provide emotional support.

Breakthrough Pain

Pain that breaks through regular medications is normal as disease progresses. Tell your nurse immediately. Additional doses can be given, or base medications can be increased.

Why It Happens

Shortness of breath (dyspnea) is common in advanced illness. Causes include fluid in lungs, heart/lung disease, weakness, anxiety, or anemia. It's frightening for both patient and family—but it can be managed.

Medications

Opioids reduce the sensation of breathlessness and calm anxiety. Bronchodilators open airways. Diuretics reduce fluid. Corticosteroids reduce inflammation. Your hospice team will find the right combination.

Environmental Comfort

Position your loved one upright or semi-reclined. Keep the room cool with a fan for air circulation. Open windows if possible. Some patients find fresh air comforting. Remove heavy blankets.

Breathing Techniques

Teach slow, deep breathing: in through nose, out through mouth. "Pursed lip" breathing (breathing out slowly through pursed lips) can help. Relaxation and reassurance are crucial—anxiety worsens breathing difficulty.

When to Be Concerned

While some shortness of breath is expected, sudden severe dyspnea needs immediate attention. Call your hospice nurse. At the very end of life, noisy breathing (death rattle) is normal and not distressing to the patient.

Understanding Nausea

Causes include medications, pain, constipation, anxiety, liver disease, or just the disease itself. Nausea is treatable. Tell your nurse—there are many medication options available.

Anti-Nausea Medications

Several classes of anti-nausea drugs work in different ways. Your hospice team will find which works best. Medications can be adjusted if nausea persists. Common options include ondansetron, metoclopramide, and dexamethasone.

Dietary Approaches

Small, frequent meals are better than large ones. Offer favorite foods and cold foods (ice cream, popsicles, cold smoothies). Let your loved one decide what sounds appealing. Ginger, peppermint tea, and lemon can help some people.

Appetite Loss Is Normal

As disease progresses, appetite naturally decreases. This is normal and expected. Don't force eating—let your loved one eat what appeals to them, in amounts they want. Focus on comfort and enjoyment, not nutrition.

Comfort Feeding

As swallowing becomes difficult, offer small amounts of favorite foods, ice chips, or sips of liquids. Mouth care (moistening lips, gentle brushing) keeps the mouth comfortable. Swallowing difficulties don't require a feeding tube in hospice.

Constipation (Very Common)

Nearly all patients on opioids become constipated. Decreased activity, reduced fluids, and medications all contribute. This is predictable and preventable—discuss with your nurse. A bowel regimen should start with pain medications.

Prevention Strategies

Start stool softeners and mild laxatives with opioids. Increase fiber if tolerated. Encourage fluids and movement. Regular bathroom schedules help. Privacy and comfort matter—constipation causes discomfort and anxiety.

Medication Options

Stool softeners (docusate), osmotic laxatives (polyethylene glycol), stimulant laxatives (senna, bisacodyl), and opioid antagonists (naloxegol) are available. Suppositories or enemas provide relief if needed.

Diarrhea Management

Diarrhea is less common but still possible. Causes include medications, infections, dietary changes, or anxiety. Anti-diarrheal medications, dietary adjustments, and treating the underlying cause help.

Skin Care

Frequent diarrhea or constipation with straining can cause skin breakdown. Keep the area clean and dry. Use barrier creams. Tell your hospice team about skin irritation.

Fever

Fever can be from infection, disease progression, or medications. While uncomfortable, low fevers don't always require treatment. Cool compresses, light clothing, and fluids help. Your nurse will guide when to treat fever.

Confusion & Delirium

Confusion or restlessness near the end of life is common and expected. Causes include medications, dehydration, infection, or organ failure. Keep your loved one safe. Calm, reassuring presence helps. Medications can reduce agitation if needed.

Skin Issues (Pressure Sores)

Limited mobility increases pressure ulcer risk. Frequent repositioning (every 2 hours if possible), pressure-relieving surfaces, and good skin care prevent problems. Report redness or breakdown immediately.

Sleep Disturbances

Pain, anxiety, medication side effects, or nighttime discomfort cause poor sleep. Pain control, comfortable positioning, a calm environment, and relaxation techniques help. Some sedation may be appropriate.

Anxiety & Restlessness

Existential anxiety, fear, or unresolved issues cause restlessness. Emotional support, spiritual care, legacy work, and medication can help. Honesty, presence, and permission to let go support peace.

Swelling (Edema)

Swelling in legs, hands, or abdomen may occur. Elevation, gentle compression, diuretics, and massage provide relief. As end of life approaches, edema is expected and often isn't treated aggressively.

Tell Your Nurse Everything

There is no symptom too small to report. Pain, discomfort, anxiety, nausea, constipation, sleep problems—tell your hospice team. They have tools to help. Speaking up leads to better comfort.

Use a Pain Scale

Help your loved one rate pain on a scale of 0-10. Document when symptoms occur, what makes them better or worse, and how long they last. This helps your nurse adjust care.

Ask Questions

Ask why medications are prescribed. Ask about side effects. Ask what signs mean you should call the nurse. Understanding the plan helps you participate in care.

Night Calls Are Expected

Your hospice nurse is available 24/7. Don't worry about calling at night—that's what they're there for. New symptoms, medication side effects, or fears deserve immediate support.

Advocate for Change

If a medication isn't working or side effects are bothersome, ask to try something else. Symptom management is as much art as science. What works varies by person and changes over time.