Palliative and Hospice Care: Goals of Care & Symptom Management at End of Life

Palliative and Hospice Care: Goals of Care & Symptom Management at End of Life

A practical guide for nurses, clinicians, and caregivers

What Is This?

Palliative and hospice care focus on relieving suffering and improving quality of life for patients with serious, life-limiting illnesses. While palliative care can begin at any stage of illness (even alongside curative treatment), hospice care is reserved for patients with a prognosis of 6 months or less who forgo curative therapies.

Why use it today? - 1 in 5 Americans dies in an ICU, often with uncontrolled pain and distress. - 80% of patients prefer to die at home, but only 20% do—hospice and palliative care make this possible. - Cost-effective: Hospice reduces hospitalizations, saving $2,300–$7,000 per patient in the last month of life.

Why It Matters

For Patients & Families

• Dignity in dying: Avoids unnecessary suffering, invasive procedures, and prolonged hospital stays.
• Emotional support: Addresses fear, grief, and spiritual distress for patients and caregivers.
• Autonomy: Honors patient preferences (e.g., "Do Not Resuscitate" [DNR], comfort-focused care).

For Healthcare Systems

• Reduces burnout: Clinicians report less moral distress when goals of care are clear.
• Lowers costs: Hospice patients are 3x less likely to be hospitalized in their final days.
• Improves outcomes: Patients in hospice live longer on average than those receiving aggressive end-of-life treatment.

For Society

• Shifts culture: Moves from "death as failure" to "death as a natural process."
• Supports caregivers: 1 in 4 Americans is a caregiver; palliative/hospice care provides respite and guidance.

Core Concepts

1. Goals of Care: The "Big 3" Frameworks

Clarify the patient’s priorities to guide treatment decisions.

Key principle: Goals can shift over time. A patient may start with curative intent but transition to comfort-focused care as disease progresses.

2. The 5 Domains of Palliative Care

Address physical, psychological, social, spiritual, and practical needs.

Key principle: Symptoms interact. For example, untreated pain worsens anxiety, which then amplifies pain.

3. The "Death Trajectories" Model

Predicts how different illnesses progress to help tailor care.

Key principle: Dementia patients often die from complications (e.g., pneumonia) but may not be recognized as "dying" until late. Early palliative involvement improves outcomes.

4. Symptom Management at End of Life

The "Big 4" Symptoms (and How to Treat Them)

Key principle: Opioids are safe in dying patients. Fear of "hastening death" is a myth—proper dosing relieves suffering without shortening life.

The "Death Rattle" (Terminal Secretions)

• Cause: Inability to clear saliva/oral secretions (not painful for the patient).
• Treatment:
• Repositioning (side-lying, head elevated).
• Anticholinergics (glycopyrrolate, atropine drops).
• Suctioning is rarely helpful (can cause distress).

Key principle: Reassure families—the patient is not "drowning" or suffering.

5. Communication: The SPIKES Protocol

A structured approach to delivering bad news.

Key principle: Silence is powerful. Pause after delivering news—let the patient/family process.

How It Works: The Hospice/Palliative Care Workflow

1. Referral & Eligibility

• Palliative care: No prognosis requirement; can be initiated at diagnosis.
• Hospice care: Requires ?6-month prognosis (certified by 2 physicians) and forgoing curative treatment.

Who refers? - Physicians, nurses, social workers, or patients/families (self-referral).

2. Interdisciplinary Team (IDT) Assessment

A team of specialists evaluates the patient’s needs:

3. Care Plan Development

• Medication regimen: Focus on PRN (as-needed) meds for symptoms.
• Equipment: Hospital bed, oxygen, commode, wheelchair.
• Emergency plan: What to do if symptoms worsen (e.g., "Call hospice nurse first, not 911").

4. Ongoing Management

• Daily visits (nurse, aide) in the last days.
• 24/7 on-call support for crises.
• Bereavement support for family (up to 13 months post-death).

Hands-On: Symptom Management in Action

Prerequisites

• Knowledge: Basic pharmacology (opioids, benzodiazepines, anticholinergics).
• Tools: Stethoscope, pulse oximeter, symptom assessment scales (e.g., Edmonton Symptom Assessment System [ESAS]).
• Mindset: Comfort > cure. Focus on what the patient values most.

Step-by-Step: Managing Dyspnea in a Dying Patient

Scenario: A 78-year-old with end-stage COPD is gasping for air at home. Family is panicked.

1. Assess:
2. Oxygen saturation (if <90%, consider oxygen—but not always necessary).
3. Respiratory rate (tachypnea is common; focus on patient’s distress, not numbers).

4. Use ESAS: "On a scale of 0–10, how short of breath are you?"

5. Non-Pharmacologic Interventions:

6. Positioning: Upright, leaning forward (tripod position).
7. Fan: Direct cool air at the face (triggers trigeminal nerve, reduces dyspnea).

8. Calm presence: Hold their hand, speak softly.

9. Pharmacologic Interventions:

10. Morphine sulfate:
    • Dose: Start with 2.5–5 mg PO/SL q4h PRN (or 1–2 mg IV/SC q1h PRN).
    • Titrate: Increase by 25–50% if no relief after 30–60 mins.

11. Lorazepam (if anxiety present):

    • Dose: 0.5–1 mg PO/SL q4h PRN.

12. Reassess:

13. Goal: Patient reports dyspnea score ?3/10.

14. If no relief: Consider continuous infusion (e.g., morphine 1 mg/hr IV).

15. Educate the Family:

16. "This is not suffering—it’s the body’s way of slowing down."
17. "We’ll keep adjusting meds to keep him comfortable."

Expected Outcome: - Patient’s respiratory rate may increase or decrease—focus on distress level, not numbers. - Family feels supported and informed.

Common Pitfalls & Mistakes

1. Under-Treating Pain

• Mistake: Fear of opioids leads to subtherapeutic dosing.
• Fix:
• Start low, go slow—but don’t undertreat.
• Use equianalgesic dosing when switching opioids (e.g., morphine 10 mg IV = hydromorphone 1.5 mg IV).

2. Ignoring Non-Pharmacologic Interventions

• Mistake: Jumping straight to meds without trying positioning, fans, or relaxation techniques.
• Fix:
• Always try non-pharm first (e.g., fan for dyspnea, heat for pain).
• Combine approaches (e.g., morphine + fan + calm voice).

3. Overusing Oxygen in Non-Hypoxic Patients

• Mistake: Assuming all dyspnea = hypoxia.
• Fix:
• Check SpO?—if >90%, oxygen won’t help (and may dry mucous membranes).
• Use opioids instead (morphine reduces air hunger by altering perception).

4. Failing to Address Family Distress

• Mistake: Focusing only on the patient while the family burns out.
• Fix:
• Ask: "How are you holding up?"
• Offer respite: Hospice provides 5 days of inpatient respite care for caregivers.

5. Not Recognizing Imminent Death

• Mistake: Missing signs of active dying (e.g., Cheyne-Stokes breathing, mottling).
• Fix:
• Teach families what to expect (see 30-Second Cheat Sheet).
• Avoid unnecessary interventions (e.g., IV fluids can cause edema and dyspnea).

Best Practices

For Symptom Management

Use the "PRN + Scheduled" approach: - Scheduled meds (e.g., morphine 5 mg q4h) plus PRN (e.g., 2.5 mg q1h PRN breakthrough pain). ? Anticipate symptoms: - Dyspnea: Start opioids before it becomes severe. - Delirium: Reduce stimuli, use low-dose haloperidol. ? Simplify regimens: - Avoid polypharmacy—stop non-essential meds (e.g., statins, antihypertensives).

For Communication

Use "I wish" statements: - "I wish we had a cure, but since we don’t, let’s focus on keeping you comfortable." ? Avoid euphemisms: --"He’s passed away." --"He has died." ? Normalize emotions: - "It’s okay to feel angry/relieved/guilty—all of these are normal."

For Caregivers

Teach "comfort measures only": - No more: Blood draws, vital signs, IV fluids (unless for comfort). - Yes to: Mouth care, repositioning, pain meds. ? Prepare for the "last hours": - Signs of imminent death: - Cool extremities (mottling). - Irregular breathing (Cheyne-Stokes). - Decreased urine output. - Restlessness-peacefulness.

Tools & Frameworks

Assessment Tools

Medication Protocols

Documentation Templates

Hospice Admission Note
- Prognosis: ?6 months (per Dr. Smith, 5/15/24).
- Goals of Care: Comfort-focused; DNR/DNI.
- Symptoms: Pain 7/10, dyspnea 5/10.
- Medications:
  - Morphine 5 mg PO q4h PRN pain/dyspnea.
  - Lorazepam 0.5 mg SL q4h PRN anxiety.
- Family Support: Daughter is primary caregiver; respite care approved.

Real-World Use Cases

1. Cancer Patient Transitioning to Hospice

Scenario: A 65-year-old with metastatic lung cancer has