Palliative Care / Hospice

01 Philosophy & Scope of Palliative Care

Palliative care is specialized medical care focused on providing relief from the symptoms, pain, and stress of serious illness, regardless of diagnosis or stage. The World Health Organization (WHO) defines it as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems — physical, psychosocial, and spiritual.” Critically, palliative care is not limited to end-of-life care; it can and should be delivered concurrently with curative or disease-modifying treatments from the point of diagnosis of a serious illness.

Palliative Care vs Hospice vs Curative Care

Historical Foundations

The modern hospice and palliative care movement was founded by Dame Cicely Saunders (1918–2005), who established St. Christopher’s Hospice in London in 1967 — the first modern hospice. She pioneered the concept of total pain (see Section 02) and the use of regularly scheduled opioids rather than “as-needed” dosing. In the United States, the hospice movement was advanced by Elisabeth Kübler-Ross, whose 1969 book On Death and Dying introduced the five stages of grief (denial, anger, bargaining, depression, acceptance). The Medicare Hospice Benefit was established in 1982. Palliative medicine became a recognized ABMS subspecialty in 2006.

02 Total Pain & Suffering Framework

Cicely Saunders introduced the concept of total pain to describe the multidimensional nature of suffering in serious illness. Total pain encompasses four interrelated domains, all of which must be assessed and addressed for effective palliation.

The Four Domains of Total Pain

Spiritual Assessment Tools

The FICA Spiritual History Tool (Puchalski, 2000) provides a structured framework:

• F — Faith, Belief, Meaning: “Do you consider yourself spiritual or religious?”
• I — Importance and Influence: “How important is faith in your life? How does it influence your healthcare decisions?”
• C — Community: “Are you part of a spiritual or religious community?”
• A — Address in Care: “How would you like healthcare providers to address spiritual needs?”

03 Palliative Care Triggers & Consultation Criteria

Early identification of patients who would benefit from palliative care consultation improves outcomes. Many institutions use screening tools or “trigger criteria” to prompt automatic palliative care referral.

Common Palliative Care Trigger Criteria

Primary vs Specialist Palliative Care

04 Key Terminology & Abbreviations

05 Pain Assessment Tools

Effective pain management requires systematic, repeated assessment using validated tools appropriate to the patient population. Pain is subjective — the patient’s self-report is the gold standard when obtainable.

Pain Assessment Scales

PAINAD Scale — Full Enumeration

Comprehensive Pain Assessment: OPQRSTUV

• Onset — When did the pain start? Sudden or gradual?
• Provocative/Palliative — What makes it worse? What makes it better?
• Quality — What does it feel like? (sharp, dull, burning, aching, stabbing, electric)
• Region/Radiation — Where is the pain? Does it radiate?
• Severity — Rate 0–10 (NRS)
• Temporal — Constant vs intermittent? Duration? Pattern?
• Understanding — What does the patient believe is causing the pain?
• Values — What is the patient’s goal for pain control? Acceptable pain level?

Nociceptive vs Neuropathic Pain

06 WHO Analgesic Ladder & Opioid Pharmacology

WHO Three-Step Analgesic Ladder

Opioid Pharmacology — Key Agents

Opioid Side Effects & Management

07 Opioid Rotation & Equianalgesic Dosing

Opioid rotation is the practice of switching from one opioid to another. Indications include: uncontrolled pain despite dose escalation, intolerable side effects (nausea, myoclonus, sedation, hallucinations), opioid-induced hyperalgesia, renal failure (avoid morphine), route change requirement, or cost/availability issues.

Equianalgesic Dose Table

Steps for Opioid Rotation

1. Calculate total 24-hour dose of current opioid in oral morphine equivalents (OME)
2. Using equianalgesic table, convert to new opioid dose
3. Reduce the calculated dose by 25–50% for incomplete cross-tolerance (25% reduction if pain is well-controlled; 50% if rotating due to side effects or to methadone)
4. Calculate new scheduled dose and breakthrough dose (10–15% of total 24-hour dose, given q1–2h PRN)
5. Titrate over subsequent days based on number of breakthrough doses used

Methadone Conversion — Variable Ratio

Methadone conversion is not a fixed ratio. The equianalgesic ratio increases as the morphine dose increases, due to methadone’s long half-life and NMDA-receptor activity:

Breakthrough Pain Dosing

Breakthrough dose = 10–15% of the total 24-hour scheduled opioid dose, given as an immediate-release formulation every 1–2 hours PRN. Example: patient on morphine SR 60 mg q12h (120 mg/24h) → breakthrough = morphine IR 12–18 mg (round to 15 mg) q1–2h PRN. If patient uses ≥3 breakthrough doses per day consistently, incorporate breakthrough doses into the scheduled regimen by increasing the around-the-clock dose by the total daily breakthrough used.

08 Adjuvant Analgesics & Interventional Pain

Adjuvant analgesics are medications whose primary indication is not pain but which have analgesic properties for specific pain syndromes. They are essential in palliative care, particularly for neuropathic pain, bone pain, and pain refractory to opioids alone.

Adjuvant Analgesics by Class

Interventional Pain Management in Palliative Care

09 Dyspnea

Dyspnea is the subjective sensation of breathing discomfort. It is one of the most distressing symptoms in advanced illness, affecting up to 70% of patients with advanced cancer and >90% with end-stage COPD or CHF. Like pain, dyspnea is subjective — the patient’s report is the gold standard; oxygen saturation does not correlate well with dyspnea severity.

Etiology in Palliative Patients

• Pulmonary: Pleural effusion, lung parenchymal disease (primary or metastatic), pneumonia, PE, COPD/asthma exacerbation, radiation pneumonitis, lymphangitic carcinomatosis, SVC syndrome
• Cardiac: Heart failure (pulmonary edema), pericardial effusion/tamponade
• Other: Anemia, ascites (diaphragmatic splinting), anxiety/panic, neuromuscular weakness (ALS), chest wall disease

Non-Pharmacologic Management

• Fan therapy: Directed air flow to the face stimulates V2/V3 trigeminal nerve branches — evidence-based, simple, and effective
• Upright positioning, energy conservation, relaxation/breathing techniques
• Oxygen: Only beneficial if hypoxemic (SpO2 <90%); in non-hypoxemic dyspnea, fan therapy is equivalent to supplemental O2

Pharmacologic Management

10 Nausea & Vomiting

Nausea and vomiting affect 40–70% of patients with advanced cancer and are common in many terminal illnesses. Effective management requires identifying the underlying mechanism to select targeted antiemetics. There are four main emetic pathways.

Etiology-Based Approach to Nausea/Vomiting

Key Antiemetics in Palliative Care

11 Constipation & Bowel Management

Constipation affects >90% of patients on chronic opioids and is the most common opioid side effect that does NOT develop tolerance. Prevention is essential: every patient starting an opioid should simultaneously start a bowel regimen.

Opioid-Induced Constipation (OIC) Pathophysiology

Opioids activate mu-receptors in the myenteric and submucosal plexus of the GI tract, causing: (1) decreased peristalsis (reduced propulsive contractions), (2) increased tone of non-propulsive circular muscle (spasm), (3) decreased secretions (fluid absorption increases), (4) increased anal sphincter tone. The net effect is hard, infrequent stools.

Laxative Ladder for OIC

Bowel Obstruction in Palliative Care

See Section 28 (Malignant Bowel Obstruction) for detailed management. Key principle: in inoperable malignant bowel obstruction, pharmacologic management with octreotide, dexamethasone, and antiemetics can achieve symptom control without surgery or NG tube in many patients.

12 Delirium & Terminal Agitation

Delirium is an acute, fluctuating disturbance of consciousness with inattention and cognitive dysfunction. It occurs in up to 88% of patients in the last weeks of life and is the most common neuropsychiatric complication in terminally ill patients. It is deeply distressing to patients, families, and clinicians.

Delirium Classification

Reversible Causes (Mnemonic: DELIRIUM)

• D — Drugs (opioids, benzodiazepines, anticholinergics, corticosteroids, polypharmacy)
• E — Electrolyte abnormalities (hypercalcemia, hyponatremia, hypo/hyperglycemia)
• L — Liver/renal failure (uremia, hepatic encephalopathy)
• I — Infection (UTI, pneumonia, sepsis)
• R — Retention (urinary retention, fecal impaction)
• I — Intracranial pathology (brain metastases, leptomeningeal disease, stroke)
• U — Uncontrolled pain (inadequately treated pain can cause delirium)
• M — Metabolic (hypoxia, dehydration)

Management

Reversible delirium (~50% of episodes): Identify and correct underlying cause(s). Opioid rotation if opioid metabolite accumulation suspected. Adjust medications. Hydrate if dehydration likely contributes. Treat infection if consistent with goals of care.

Irreversible / terminal delirium: In the last days of life, delirium is often irreversible (“terminal agitation”) due to progressive multi-organ failure. Focus shifts to comfort and safety.

Pharmacologic Management

13 Fatigue, Cachexia & Anorexia

Cancer-related fatigue is the most common symptom in advanced cancer (60–90% prevalence) and is distinct from normal tiredness — it is not relieved by rest. Cancer cachexia is a multifactorial syndrome defined by ongoing muscle loss (with or without fat loss) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment.

Cancer Cachexia Staging

Pharmacologic Appetite Stimulants

Fatigue Management

• Rule out reversible causes: anemia, hypothyroidism, depression, deconditioning, sleep disturbance, infection, electrolyte abnormalities, medication side effects (opioids, benzodiazepines)
• Non-pharmacologic: Exercise (moderate aerobic exercise is the most evidence-based intervention for cancer-related fatigue); energy conservation; sleep hygiene; psychosocial support
• Pharmacologic: Methylphenidate 5–10 mg PO morning and early afternoon (evidence supports use in cancer-related fatigue); dexamethasone 2–4 mg daily (short-term); modafinil (limited evidence)

14 Secretions, Pruritus, Hiccups & Wound Care

Death Rattle (Terminal Secretions)

The “death rattle” is noisy, gurgling breathing caused by accumulation of pharyngeal secretions in a patient too weak to clear them, typically in the last hours to days of life. It occurs in 23–92% of dying patients. It is generally more distressing to family members than to the patient (who is usually obtunded).

Management of Death Rattle

Pruritus in Palliative Care

Hiccups (Singultus)

Intractable hiccups can be severely debilitating. Common causes in palliative care include gastric distension, diaphragmatic irritation (hepatomegaly, ascites, phrenic nerve involvement), CNS lesions, and metabolic derangements (uremia, hyponatremia).

Malignant Wounds

Fungating wounds from cutaneous tumor involvement cause odor, exudate, bleeding, and pain. Management is palliative, not curative:

• Odor: Topical metronidazole 0.75% gel applied to wound BID (reduces anaerobic bacterial load); activated charcoal dressings; room deodorizers
• Bleeding: Hemostatic dressings (alginate); topical tranexamic acid (500 mg crushed in saline); topical sucralfate paste; adrenaline-soaked gauze (1:1000); gentle dressing changes; palliative radiation for recurrent bleeding
• Exudate: Absorptive dressings (foam, alginate, hydrofiber); gentle non-adherent primary layer
• Pain: Topical morphine gel (0.1% morphine in hydrogel); topical lidocaine before dressing changes; systemic analgesia

15 Goals of Care Conversations

Goals-of-care conversations are structured discussions that explore what matters most to the patient in the context of their illness, align treatment plans with patient values, and support shared decision-making. They are a core competency in palliative medicine.

SPIKES Protocol for Difficult Conversations

NURSE Statements for Empathic Response

Ask-Tell-Ask Framework

An efficient communication structure for conveying medical information:

• Ask: “What do you already know about your condition?” (assess baseline understanding)
• Tell: Provide information concisely, in language the patient understands, addressing any gaps or misconceptions identified
• Ask: “What questions do you have about what I just shared?” (confirm understanding)

16 Breaking Bad News & Prognostic Disclosure

Prognostic Communication

Most patients with serious illness want some information about prognosis, though preferences vary. Key principles for prognostic disclosure:

• Ask before telling: “Would it be helpful if I shared what I think is likely to happen?”
• Frame as ranges: “I’m thinking in terms of weeks to months” rather than specific dates; use time frames: hours-to-days, days-to-weeks, weeks-to-months, months-to-years
• Hope for the best, plan for the worst: “I hope you will beat the odds, but I think it’s important for us to plan for the possibility that time may be limited.”
• Avoid false precision: Clinicians overestimate survival by a factor of 3–5× on average (Christakis & Lamont, BMJ 2000)
• Acknowledge uncertainty: “I wish I could tell you exactly how much time you have, but no one can predict that precisely.”

Cultural Considerations in Prognostic Disclosure

In many cultures, direct disclosure of terminal prognosis to the patient is considered harmful or disrespectful. Some families request that the diagnosis or prognosis be disclosed only to family members, not to the patient. Approach: ask the patient how they prefer to receive information and who should be involved in discussions. Respect cultural norms while fulfilling ethical duties of informed consent.

Common Physician Phrases to Use and Avoid

17 Surrogate Decision-Making & Family Meetings

Surrogate Decision-Making Hierarchy

When a patient lacks decision-making capacity and has no advance directive or designated healthcare proxy, state laws define a hierarchy of surrogate decision-makers (varies by state, but commonly):

1. Court-appointed guardian (if applicable)
2. Designated healthcare proxy/DPOA-HC (if exists)
3. Spouse or domestic partner
4. Adult children
5. Parents
6. Adult siblings
7. Other relatives or close friends

Standards for Surrogate Decision-Making

Structured Family Meeting Framework

1. Pre-meeting: Review medical facts; align medical team on prognosis and recommendations; identify participants; set agenda; designate meeting leader
2. Introductions and ground rules: Introduce all participants; set expectation for length; clarify purpose
3. Assess understanding: “What is your understanding of [patient’s] medical situation?”
4. Provide medical update: Clear, jargon-free language; headline first (“I’m worried that…”)
5. Respond to emotions: NURSE statements; allow silence and tears
6. Explore values and goals: “If [patient] could speak for themselves, what would they say?” “What would a good day look like for [patient]?”
7. Make a recommendation: “Based on what you have told me about [patient’s] values, I would recommend…” (clinicians should not ask families to “decide” but rather make a recommendation aligned with patient values)
8. Establish plan and follow-up: Summarize decisions; identify next steps; schedule follow-up

18 Code Status Discussions (DNR/DNI/AND)

Definitions

Approach to Code Status Discussion

• Code status should be discussed in the context of overall goals of care, not in isolation
• Provide a medical recommendation based on prognosis and likely outcomes of CPR (not just “what do you want?”)
• Educate about realistic CPR outcomes: overall survival to hospital discharge after in-hospital cardiac arrest is ~25% for shockable rhythms and ~10% for non-shockable; for patients with metastatic cancer, survival to discharge is <6%; for patients with multi-organ failure, <2%
• For patients where CPR would not be medically beneficial, it is ethically appropriate to recommend DNR: “Based on your medical condition, I do not recommend CPR because it would not work and would cause suffering.”

19 Advance Directives & Living Wills

Types of Advance Directives

Key Legal Principles

• Advance directives are governed by state law — requirements vary by jurisdiction (witnessing, notarization, specific forms)
• The Patient Self-Determination Act (1990) requires hospitals/healthcare facilities to inform patients of their right to create advance directives and to document whether they have one
• An advance directive from one state is generally honored in other states, but it is advisable to complete forms for the current state of residence
• Patients can revoke or modify advance directives at any time while they retain capacity
• Advance directives do not replace verbal expressions of current wishes — a patient with capacity can override their own advance directive at any time

20 POLST/MOLST Paradigm

The POLST (Physician Orders for Life-Sustaining Treatment) is a brightly colored (usually pink or green) medical order form that translates patient wishes into actionable medical orders. Unlike advance directives (which are legal documents), POLST is a medical order signed by a clinician.

POLST vs Advance Directive

Standard POLST Sections

• Section A — Cardiopulmonary Resuscitation: Attempt CPR / Do Not Attempt Resuscitation (DNAR)
• Section B — Medical Interventions: Full treatment / Selective treatment (IV fluids, cardiac monitoring, but no intubation) / Comfort-focused treatment only
• Section C — Artificially Administered Nutrition: Long-term artificial nutrition (PEG tube) / Time-limited trial / No artificial nutrition

21 Capacity Assessment & Informed Consent

Decision-making capacity is a clinical determination (made by any physician, not just psychiatrists) that a patient can make a specific medical decision at a specific time. It is distinct from competence, which is a legal determination made by a court.

Four Elements of Decision-Making Capacity (Appelbaum Criteria)

Key Principles

• Capacity is decision-specific: a patient may have capacity for simple decisions (accepting food) but not complex ones (surgery consent)
• Capacity can fluctuate: reassess at different times of day (delirium often worse at night)
• Capacity is NOT determined by the outcome of the decision — a patient can refuse life-saving treatment if they have capacity; the threshold for capacity assessment may increase with the severity of consequences (sliding scale approach)
• Diagnosis alone does not determine capacity: patients with dementia, psychiatric illness, or intellectual disability may retain capacity for some decisions
• If capacity is unclear after bedside assessment, a formal psychiatric consultation may be obtained, but this is not mandatory

22 Medicare Hospice Benefit & Eligibility

The Medicare Hospice Benefit (MHB), established in 1982, is the primary funding mechanism for hospice care in the United States. To be eligible, the patient must meet two criteria: (1) a physician certifies a prognosis of ≤6 months if the disease runs its usual course, and (2) the patient elects comfort-focused care (forgoing curative treatment for the terminal diagnosis).

Medicare Hospice Benefit Structure

General Hospice Eligibility Guidelines

23 Hospice Levels of Care

The Medicare Hospice Benefit defines four levels of care, each with different per-diem reimbursement rates and staffing requirements.

24 Disease-Specific Hospice Criteria

Medicare Local Coverage Determinations (LCDs) provide disease-specific guidelines for hospice eligibility. Below are the key criteria for major disease categories, based on the National Hospice and Palliative Care Organization (NHPCO) guidelines.

Cancer

Disease with distant metastases at presentation OR progression from an earlier stage despite curative therapy; declining performance status (PPS ≤70%); continued decline despite treatment. Certain cancers (pancreatic, hepatocellular, GBM, metastatic melanoma) have inherently poor prognosis. Declining nutritional status and functional decline support eligibility.

Heart Failure (CHF)

• NYHA Class IV symptoms (dyspnea at rest) despite optimal medical therapy (ACEi/ARB, beta-blocker, diuretics, aldosterone antagonist)
• EF ≤20% (or preserved EF with refractory symptoms)
• Resistant to maximum tolerated diuretics
• Recurrent hospitalizations (≥3 in past 12 months) for CHF exacerbation
• History of cardiac arrest, syncope, or CVA
• Supplemental documentation: renal insufficiency (BUN >25, Cr >1.5), refractory hyponatremia (Na <134), cardiac cachexia

COPD/Chronic Lung Disease

• Disabling dyspnea at rest, poorly responsive to bronchodilators
• FEV1 <30% predicted (after bronchodilator)
• Progressive disease with increasing ER visits/hospitalizations despite optimal therapy
• Cor pulmonale / right heart failure
• Resting hypoxemia (PaO2 ≤55 mmHg on supplemental O2 or SpO2 ≤88%)
• Resting tachycardia >100 bpm
• Unintentional weight loss >10% over 6 months

Dementia

• FAST Stage ≥7A (cannot speak >5 words, ambulatory ability lost, ability to sit up lost, ability to smile lost, cannot hold head up)
• At least one of the following complications in the past 12 months: aspiration pneumonia, pyelonephritis or UTI, septicemia, decubitus ulcers (Stage 3–4), recurrent fevers, inability to maintain sufficient caloric intake (weight loss >10% or albumin <2.5)
• PPS ≤40%

Renal Disease (ESRD)

• Patient is not seeking or has discontinued dialysis
• CrCl <10 mL/min (<15 if diabetic)
• Serum Cr >8.0 (>6.0 if diabetic)
• Uremia symptoms: nausea, vomiting, confusion, intractable pruritus, restless legs, fluid overload
• Oliguria (<400 mL/24h)
• GFR <10 mL/min

Liver Disease

• End-stage liver disease (Child-Pugh C score ≥10; MELD ≥21) not a transplant candidate
• PT >5 sec over control or INR >1.5
• Albumin <2.5 g/dL
• Refractory ascites or spontaneous bacterial peritonitis
• Hepatorenal syndrome
• Hepatic encephalopathy refractory to treatment
• Recurrent variceal bleeding despite treatment

Stroke & Coma

• Post-CVA in comatose state at onset: Coma or persistent vegetative state beyond 3 days
• Post-CVA in non-comatose patients: Dysphagia preventing adequate oral intake, PPS ≤40%, post-stroke dementia (FAST ≥7)
• Karnofsky ≤40% or PPS ≤40%

ALS / Neurodegenerative Disease

• Critically impaired breathing capacity: vital capacity <30% predicted, significant dyspnea at rest, refusal of artificial ventilation
• Rapid progression of disease with critical nutritional impairment (inability to maintain adequate oral intake, refusal of PEG tube, weight loss)
• Life-threatening complications: recurrent aspiration pneumonia, decubitus ulcers Stage 3–4, sepsis

25 Hospice Recertification, Revocation & Discharge

Recertification

• At the start of each new benefit period (two 90-day periods, then 60-day periods), the hospice physician and attending physician must recertify that the patient continues to have a prognosis of ≤6 months if the disease runs its usual course
• Beginning with the 3rd benefit period, a face-to-face encounter (by hospice physician or hospice NP) is required within 30 days prior to the start of the new period to confirm ongoing eligibility
• Document: continued decline, functional status, nutritional status, disease-specific criteria

Revocation

A patient may revoke the hospice benefit at any time for any reason, effective the date of revocation. Revocation does not require a reason. The patient returns to standard Medicare and may re-elect hospice at any time. Common reasons for revocation: desire to pursue curative/disease-directed treatment, feeling “better,” family pressure, need for a covered procedure or hospitalization not related to the terminal Dx but denied under hospice.

Live Discharge

The hospice may discharge a patient if: (1) the patient’s condition improves and they no longer meet eligibility criteria (extended prognosis, improved function); (2) the patient moves out of the service area; (3) the patient exhibits behavior that makes care delivery unsafe (rare, must document extensively and attempt to resolve). The hospice must provide a discharge plan and ensure continuity of care.

26 Interdisciplinary Team & Care Delivery

Hospice care is delivered by an interdisciplinary team (IDT), which is distinct from a multidisciplinary team. In an IDT, team members collaborate, share expertise across disciplines, and develop a unified care plan; in a multidisciplinary team, disciplines work in parallel.

Core IDT Members

IDT Care Conference

The IDT meets regularly (typically every 2 weeks) to review each patient’s plan of care, discuss symptom management, update goals of care, and coordinate services. The plan of care is updated based on IDT input and the patient’s changing needs.

27 Cancer-Related Palliative Emergencies

Hypercalcemia of Malignancy

Most common metabolic emergency of cancer (10–30% of cancer patients). Three mechanisms: (1) humoral (PTHrP-mediated) — squamous cell cancers, renal; (2) osteolytic — breast, myeloma; (3) calcitriol-mediated — lymphoma.

28 Malignant Bowel Obstruction & Effusions

Malignant Bowel Obstruction (MBO)

MBO occurs in 5–42% of patients with advanced abdominal/pelvic cancers (ovarian, colorectal, gastric). In patients with peritoneal carcinomatosis, surgical intervention is often not feasible and carries high morbidity/mortality.

Medical Management of Inoperable MBO

Venting gastrostomy (PEG/G-tube): For patients with persistent high-volume vomiting despite maximal medical therapy, a percutaneous venting gastrostomy allows drainage of gastric contents and can dramatically improve quality of life by eliminating vomiting while allowing the patient to eat/drink for pleasure (with the understanding that intake will drain out).

NG tube: May be necessary short-term for acute decompression, but long-term NG tubes are uncomfortable and not appropriate for palliative management. Transition to medical management or venting gastrostomy.

Malignant Pleural Effusion

Common in advanced lung cancer, breast cancer, mesothelioma, lymphoma. Causes progressive dyspnea.

Malignant Ascites

Common in ovarian, GI, and liver cancers. Causes abdominal distension, pain, dyspnea, early satiety, nausea.

• Paracentesis: Rapid symptom relief; can drain large volumes (up to 5 L or more with albumin replacement if >5 L); recurs rapidly (1–2 weeks)
• Indwelling peritoneal catheter: For recurrent drainage at home; reduces need for repeated paracentesis; infection risk (~5%)
• Diuretics (spironolactone + furosemide): Effective mainly for portal hypertension-related ascites; less effective for peritoneal carcinomatosis

29 Heart Failure & Device Deactivation

Palliative Care in Advanced Heart Failure

Heart failure follows an unpredictable trajectory with acute exacerbations and partial recovery, making prognostication difficult. Key palliative issues include refractory dyspnea, fatigue, depression, and device management.

Symptom Management in Advanced HF

Cardiac Device Deactivation

30 End-Stage Pulmonary, Renal & Hepatic Disease

End-Stage COPD

COPD follows a trajectory of gradual decline punctuated by acute exacerbations, any of which may be fatal. Palliative care needs are often comparable to advanced cancer but receive less palliative attention.

• Dyspnea: Low-dose opioids (morphine 2.5–5 mg PO q4h) reduce dyspnea without clinically significant respiratory depression; fan therapy; pulmonary rehabilitation; optimize bronchodilators and oxygen
• Anxiety/panic: Low-dose benzodiazepines or buspirone; CBT for breathlessness anxiety
• Non-invasive ventilation (NIV): May be appropriate as a palliative measure for symptom relief even when intubation is not desired; establish time-limited trial with clear goals
• Decision-making: Discuss intubation/mechanical ventilation preferences in advance; many patients would decline intubation if fully informed of likely outcomes

End-Stage Renal Disease — Dialysis Withdrawal

Dialysis withdrawal is the second most common cause of death in dialysis patients in the US (~20% of deaths). It is ethically and legally appropriate when the patient decides the burdens of dialysis outweigh the benefits.

• Decision process: Ensure decision is voluntary, informed, and made with capacity; address depression/hopelessness
• Expected time to death: Typically 7–14 days after last dialysis (range: 1–30+ days depending on residual renal function)
• Symptom management: Pruritus (gabapentin, hydroxyzine); uremic nausea (ondansetron, haloperidol); dyspnea (opioids, oxygen); fluid overload (positioning); restless legs (gabapentin, opioids); myoclonus (clonazepam)
• Hospice enrollment: Transition to hospice at time of dialysis withdrawal

End-Stage Liver Disease

Key palliative issues in decompensated cirrhosis:

• Ascites: Serial paracentesis for refractory ascites; indwelling drain consideration; salt restriction; diuretics (spironolactone/furosemide)
• Hepatic encephalopathy: Lactulose (titrate to 3–4 soft BMs/day); rifaximin 550 mg BID; avoid sedatives
• Pain management: Avoid NSAIDs (renal failure, GI bleeding); acetaminophen ≤2 g/day is safe in stable cirrhosis; opioids: prefer hydromorphone (renally cleared), fentanyl; AVOID morphine (prolonged half-life, M6G accumulation)
• Variceal bleeding: If comfort-focused, may elect not to treat actively; dark towels, anxiolytics, maintain comfort
• Pruritus: Cholestyramine, rifampin, sertraline, naltrexone (caution with opioids)

31 Neurodegenerative Disease (ALS, Dementia)

Amyotrophic Lateral Sclerosis (ALS)

ALS is a progressive motor neuron disease with median survival of 3–5 years from diagnosis. Palliative care should be integrated from diagnosis.

Key Palliative Issues in ALS

Advanced Dementia

Advanced dementia (FAST Stage 7) is a terminal illness with median survival of 18 months. Care should focus on comfort, not prolonging life.

Key Palliative Issues in Advanced Dementia

32 Signs of Imminent Death

Recognizing the signs of imminent death (hours to days) is critical for preparing families, discontinuing non-beneficial interventions, and intensifying comfort measures.

Signs of Approaching Death

Predictive Signs with High Specificity for Death within 3 Days

• PPS ≤20% (totally bed-bound, unable to do any activity, confused or obtunded, minimal or sips-only intake)
• Respiration with mandibular movement (jaw drop breathing) — specificity >95% for death within days
• Cheyne-Stokes breathing
• Peripheral cyanosis (nail beds, lips)
• Decreased urine output (<100 mL in 12 hours)
• Non-reactive pupils
• Pulselessness of the radial artery
• “Death rattle” (audible rattling respirations)

33 Comfort Care & Medication Rationalization

Medication Rationalization (Deprescribing) in the Last Days

As a patient approaches death, many medications become unnecessary, burdensome, or impossible to administer. Systematic deprescribing is an active process of discontinuing medications that no longer serve the patient’s comfort goals.

Medication Assessment at End of Life

Route Conversion at End of Life

When the patient can no longer swallow, convert essential medications to alternative routes:

34 Palliative Sedation & VSED

Palliative Sedation

Palliative sedation is the monitored use of medications intended to reduce consciousness to relieve refractory suffering at the end of life. A symptom is refractory when all available interventions have failed or no methods are available within the acceptable time frame or risk-benefit ratio.

Types of Palliative Sedation

Ethical Requirements for Palliative Sedation

• Patient is terminally ill with death expected within hours to days (for CDS)
• Suffering is refractory (all reasonable alternatives have been exhausted)
• Informed consent from patient (if capable) or surrogate
• Intent is to relieve suffering, not to hasten death (principle of double effect)
• Treatment should be proportionate (minimum dose to achieve comfort)
• Team consensus and documentation; ethics consultation recommended

Common Agents for Palliative Sedation

Voluntarily Stopping Eating and Drinking (VSED)

VSED is a decision by a patient with decision-making capacity to refuse all food and fluids, with the understanding that this will lead to death. It is legally and ethically considered a patient’s right to refuse treatment (including nutrition/hydration).

• Time to death: Typically 7–14 days (range 1–21 days)
• Symptoms: Thirst and hunger (usually diminish after 1–3 days), dry mouth (treat with oral care, ice chips for comfort), delirium (later stages)
• Eligibility: Patient must have decision-making capacity at the time of initiation; support from palliative care/hospice team is essential
• Management: Meticulous mouth care; symptom management (opioids for discomfort, benzodiazepines for agitation); hospice enrollment; do NOT force or provide fluids if the patient has clearly expressed and documented their wishes
• Ethical considerations: If the patient loses capacity and asks for food/water during delirium, the pre-stated wishes (made with capacity) should generally be honored, per advance directive. This is an area of ethical complexity — advance planning and clear documentation are essential.

35 Pronouncement & Post-Mortem Care

Pronouncement of Death

When a hospice or palliative care patient dies, a healthcare provider must formally pronounce death and document the time, date, and findings.

Steps for Pronouncement

1. Confirm identity of the patient
2. Assess for absence of responsiveness (no response to verbal or tactile stimulation)
3. Assess for absence of respirations (observe for at least 1 minute)
4. Assess for absence of heart sounds (auscultate for at least 1 minute)
5. Assess for absence of pulse (carotid for at least 1 minute)
6. Assess for fixed, dilated pupils
7. Note the time of death
8. Document findings and notify attending physician, family, and hospice

Post-Mortem Care

• Allow family time with the body; respect cultural and religious practices
• Remove medical devices (IV lines, catheters) unless autopsy is planned or medical examiner case
• Clean the body, position with dignity, close eyes and mouth
• For patients with pacemakers: Must be removed before cremation (risk of explosion); document in death notification
• Notify the funeral home (per family arrangements)
• Complete death certificate (see Section 39)
• Initiate bereavement support for the family (hospice provides 13 months)

Complicated Grief

Normal grief involves waves of intense emotion that gradually diminish over time. Complicated grief (persistent complex bereavement disorder) involves prolonged, intense grief (>12 months in adults, >6 months in children) with persistent yearning, preoccupation with the deceased, difficulty accepting the death, and functional impairment. Risk factors include: sudden/unexpected death, death of a child, history of psychiatric illness, ambivalent or dependent relationship with the deceased, lack of social support, multiple concurrent losses.

36 Principle of Double Effect & Medical Futility

Principle of Double Effect

The principle of double effect (PDE) is an ethical framework that justifies an action with both a good effect and a foreseeable (but unintended) bad effect. It is widely invoked in palliative care to justify the use of opioids for symptom relief even when they may theoretically hasten death (though evidence shows this rarely occurs at appropriate doses).

Four Conditions for PDE

Medical Futility

Medical futility refers to interventions that are unlikely to produce meaningful benefit. Two types:

Futility is controversial because it involves value judgments about what constitutes “meaningful benefit.” Most guidelines recommend: (1) transparent communication with patient/family, (2) ethics committee consultation, (3) institutional policy, (4) attempt to transfer care if disagreement persists. Unilateral withdrawal of life-sustaining treatment over patient/family objection remains legally risky in most US jurisdictions, though Texas has a formal futility process (Texas Advance Directives Act, §166.046).

37 Withholding vs Withdrawing Treatment

Ethically and legally, there is no moral distinction between withholding (not starting) and withdrawing (stopping) a life-sustaining treatment. Both are legally permissible when the patient (or surrogate) makes an informed decision or the treatment is determined to be futile. This is established in US common law (Cruzan v. Director, 1990) and endorsed by virtually all major medical and ethical organizations.

Withdrawal of Specific Life-Sustaining Treatments

38 Medical Assistance in Dying (MAID)

Medical Assistance in Dying (MAID), also called physician-assisted death (PAD) or physician-assisted suicide (PAS), refers to the practice of a physician prescribing (or in some jurisdictions, administering) a lethal medication to a terminally ill patient who requests it.

Legal Status (United States, as of 2025)

MAID is legal in: Oregon (1997 — Death with Dignity Act, the first), Washington, Vermont, California, Colorado, Hawai’i, Maine, New Jersey, New Mexico, and Washington D.C. The specific name and details of the law vary by jurisdiction. It is also legal in Canada (MAiD, including for non-terminal conditions under certain circumstances), Belgium, Netherlands, Luxembourg, Colombia, and several other countries.

Typical Safeguards (Oregon Model)

Distinctions

39 Organ Donation, Autopsy & Death Certification

Organ Donation in Palliative Care

• Hospice and palliative care patients may be eligible for organ and tissue donation
• Tissue donation (corneas, skin, bone, heart valves) is possible for most patients, including those with cancer (with some exclusions); age limits are more flexible than for solid organ donation
• The organ procurement organization (OPO) should be contacted at time of death (required by CMS) to evaluate eligibility; do not pre-screen and exclude patients
• In some cases, donation after circulatory death (DCD) may be an option for hospice patients who die in the hospital, though this is uncommon

Autopsy

• Autopsy is generally not required for hospice patients who die of their terminal illness
• Cases that may require referral to the medical examiner/coroner: death within 24 hours of admission, death of unknown cause, death potentially related to injury or suspected foul play, death during or immediately after surgery
• State laws vary regarding which deaths must be reported to the medical examiner
• Autopsy can be offered to families for educational purposes or closure; should be presented sensitively

Death Certification

The death certificate is a legal document completed by the certifying physician (attending physician or hospice medical director).

• Cause of death: List the chain of events leading to death in order (immediate cause of death → due to/consequence of → underlying cause). Example: Immediate cause: respiratory failure; Due to: metastatic lung cancer; Due to: adenocarcinoma of the lung
• Manner of death: Natural (virtually always the case for hospice/palliative patients)
• Do NOT list “cardiac arrest” or “cardiopulmonary arrest” as a cause of death (this is the mechanism of all death, not the cause)
• Timeliness: Most states require completion within 24–72 hours of death

40 Performance & Prognostication Scales

Palliative Performance Scale (PPS) — All 11 Levels

ECOG Performance Status

Karnofsky Performance Status (KPS)

FAST Scale (Functional Assessment Staging Tool) — Full Enumeration

Edmonton Symptom Assessment Scale (ESAS)

A validated 9-item patient self-report tool measuring symptom severity on a 0–10 NRS (0 = no symptom; 10 = worst possible):

The ESAS-revised (ESAS-r) is the updated version. A 10th line is available for “other symptom” specified by the patient. The total ESAS distress score (sum of all items, 0–90) can track symptom burden over time.

Braden Scale for Predicting Pressure Sore Risk

Total score 6–23. Risk levels: ≤9 = very high risk; 10–12 = high risk; 13–14 = moderate risk; 15–18 = mild risk; 19–23 = no risk.

Palliative Prognostic Index (PPI)

Interpretation: PPI >6 = survival <3 weeks (sensitivity 80%, specificity 85%); PPI ≤4 = survival >6 weeks (sensitivity 80%, specificity 77%).

Palliative Prognostic (PaP) Score

Total score 0–17.5. Risk groups: Group A (0–5.5) = 30-day survival >70%; Group B (5.6–11.0) = 30-day survival 30–70%; Group C (11.1–17.5) = 30-day survival <30%.

41 Opioid Equianalgesic Conversion Table

This comprehensive reference table provides equianalgesic doses, conversion ratios, and key clinical notes for all commonly used opioids in palliative care.

42 Medications Master Table

Opioid Analgesics

Adjuvant Analgesics

Antiemetics

Laxatives

Anxiolytics & Sedatives

Anticholinergics (Secretion Management)

43 Abbreviations Master List