Palliative Care / Hospice

01 Palliative Care Principles & Scope

Palliative care is specialized medical care for people living with serious illness. Its focus is the relief of physical symptoms, psychological distress, and existential suffering, as well as support for families and caregivers. Unlike hospice, palliative care can be delivered concurrently with disease-directed therapy at any stage of a serious illness — a newly diagnosed cancer patient receiving chemotherapy, a heart failure patient awaiting LVAD, and a dialysis patient with advanced CKD are all appropriate for a palliative consult.

Hospice, by contrast, is a structured Medicare/Medicaid benefit for patients with a prognosis of six months or less if the illness runs its natural course, who elect to forgo curative treatment of their terminal diagnosis. Hospice care is most often delivered in the home, but can also occur in hospice inpatient units, skilled nursing facilities, or general inpatient (GIP) hospital beds. All hospice is palliative care, but not all palliative care is hospice — this distinction is one of the most common sources of confusion for new scribes.

Palliative teams are interdisciplinary by design: physician or advanced practice provider, nurse, social worker, chaplain, and often pharmacist, music therapist, and bereavement counselor. Consults are generated by oncology, cardiology, pulmonology, critical care, nephrology, neurology, hospital medicine, and primary care, and the chief complaint is rarely "one thing" — it is almost always a combination of uncontrolled symptoms plus an unresolved decision-making need.

02 Scribe Documentation Framework

The Palliative HPI

A palliative HPI is symptom-centric, goal-centric, and psychosocial-centric all at once. It typically opens with a one-line summary of the patient's life-limiting illness — "78-year-old man with metastatic castration-resistant prostate cancer to bone and liver, ECOG 3, admitted with uncontrolled pain and new confusion" — and then flows through the chief symptom, the trajectory of disease, prior treatments, current medications (with special attention to opioid regimen and breakthrough use), symptom burden across the body systems (pain, dyspnea, nausea, constipation, mood, sleep, appetite), and finally the patient's understanding of illness and goals.

The Palliative A/P

The assessment/plan is organized by symptom, not by organ system. A typical plan will have separate paragraphs for pain, dyspnea, nausea, constipation, anxiety, and goals of care, each with a one-sentence assessment (is it controlled, worsening, or new?) followed by concrete interventions. For goals-of-care encounters, the plan paragraph documents the content of the conversation: who was present, what was discussed, what was decided, what remains unresolved, and what the next step is.

03 Pain Assessment & Classification symptom

Pain is the most common reason for palliative consultation. The first task in any pain encounter is to characterize the pain mechanistically, because the right analgesic depends on what kind of pain you are treating.

Mechanistic Categories

• Somatic nociceptive pain — from skin, muscle, bone, joint. Well localized, aching, throbbing, sharp with movement. Classic example: bone metastases. Responds well to opioids, NSAIDs, acetaminophen, bisphosphonates, radiation.
• Visceral nociceptive pain — from hollow or solid organs. Poorly localized, deep, cramping, squeezing, often referred (pancreatic pain to mid-back, liver capsule pain to right shoulder). Responds to opioids and, when organ-specific, adjuvants such as glucocorticoids (liver capsule stretch) or antispasmodics.
• Neuropathic pain — from nerve injury or dysfunction. Burning, shooting, electric, tingling, numb, allodynic. Examples: chemotherapy-induced peripheral neuropathy, post-herpetic neuralgia, radiculopathy from epidural metastasis, plexopathy. Only partially responsive to opioids; requires adjuvants (gabapentinoids, TCAs, SNRIs).
• Mixed pain — the majority of cancer pain. A lung cancer patient with a Pancoast tumor has somatic chest wall pain, visceral mediastinal pain, and neuropathic brachial plexus pain all at once.
• Breakthrough pain — a transitory exacerbation of pain that "breaks through" otherwise adequately controlled background pain. Subtypes: incident (movement-provoked), spontaneous (unpredictable), and end-of-dose failure (wearing off before next scheduled dose). Requires a rapid-onset short-acting opioid, typically 10–20% of the total daily opioid dose q1–2h PRN.

Pain Assessment Tools

The WHO Analgesic Ladder

The original WHO Analgesic Ladder prescribed a three-step approach: Step 1 non-opioids (acetaminophen, NSAIDs) for mild pain, Step 2 weak opioids (codeine, tramadol) for moderate pain, and Step 3 strong opioids (morphine, oxycodone, hydromorphone, fentanyl, methadone) for severe pain. Modern practice generally skips Step 2 for cancer pain and moves directly from non-opioids to a low-dose strong opioid, with adjuvants added at every step.

04 Opioid Pharmacology & Equianalgesic Conversion medications

Opioids are the cornerstone of moderate-to-severe pain management in palliative care. A competent scribe must recognize every commonly used opioid, its routes, its relative potency, and the conversion math, because the physician will dictate conversions out loud and expect them to land in the plan correctly.

Opioids in Routine Use

Equianalgesic Conversion Table

Opioid Rotation Principles

Opioid rotation is indicated for uncontrolled pain despite titration, intolerable side effects (neurotoxicity, myoclonus, hyperalgesia, severe constipation), or organ dysfunction. The standard approach: (1) calculate the total 24-hour morphine equivalent daily dose (MEDD) including scheduled and breakthrough doses, (2) convert to the new opioid using the equianalgesic table, (3) reduce by 25–50% for incomplete cross-tolerance, and (4) divide by the appropriate dosing interval. The NCCN Adult Cancer Pain Guidelines and ASCO chronic pain in cancer survivors guideline are the standard citations.

Opioid Side Effects

Every opioid order must be paired with a bowel regimen. Constipation is universal and does not develop tolerance. Other predictable side effects include nausea (usually improves within days), sedation (tolerance develops), pruritus (histamine release, worse with morphine), urinary retention, myoclonus (dose-related, suggests neurotoxicity), and respiratory depression (the only truly dangerous effect; naloxone-reversible). Suspect opioid-induced neurotoxicity (OIN) when a patient develops delirium, hyperalgesia, allodynia, or myoclonus on escalating opioid doses — the treatment is rotation, hydration, and dose reduction, not more opioid.

05 Adjuvant Analgesics & Neuropathic Pain medications

Adjuvants are non-opioid medications that enhance analgesia, particularly for neuropathic, bone, and visceral pain. They are the second pillar of cancer pain management.

For established neuropathic pain, first-line agents are gabapentin, pregabalin, duloxetine, or a TCA — supported by the NeuPSIG pharmacotherapy recommendations. For bone metastases, dexamethasone plus radiation plus a bisphosphonate or denosumab is the standard combination. For malignant bowel obstruction pain, scheduled octreotide and scopolamine can reduce secretions and cramping.

06 Dyspnea & Respiratory Symptoms symptom

Dyspnea is the subjective sensation of breathlessness and is the second most common distressing symptom at the end of life. It is not synonymous with hypoxia — patients with normal oxygen saturation can be profoundly dyspneic, and patients with SpO2 of 85% can feel fine. The sensation of dyspnea originates from mismatch between respiratory drive and mechanical output, with major input from chemoreceptors, mechanoreceptors, and affective circuits.

Management

Nonpharmacologic measures are first-line and underused: a fan blowing air across the face reliably reduces the sensation of dyspnea via trigeminal V2 afferents, upright positioning, pursed-lip breathing, cool room temperature, energy conservation, and reassurance. Supplemental oxygen should be reserved for hypoxemic patients; in non-hypoxemic palliative patients, the Abernethy palliative oxygen trial showed that room air via nasal cannula was equivalent to oxygen.

Pharmacologically, low-dose opioids are the mainstay. Morphine 2.5–5 mg PO or 1–2 mg IV/SC q2–4h is typical for opioid-naive patients; opioid-tolerant patients need a dose titration of their existing regimen. Benzodiazepines (lorazepam 0.5–1 mg) are added for the anxiety component, not as primary dyspnea treatment. Nebulized bronchodilators, glucocorticoids (for airway edema or lymphangitic spread), and noninvasive ventilation may be considered depending on the goals-of-care trajectory.

07 Nausea, Vomiting & GI Symptoms symptom

Palliative nausea is treated by mechanism, not by trial-and-error. Identifying the likely dominant pathway directs you to the most effective antiemetic.

Metoclopramide is a prokinetic — excellent for opioid-induced gastroparesis but contraindicated in complete mechanical bowel obstruction, where increased peristalsis causes pain and may precipitate perforation. Olanzapine 2.5–5 mg has become a favored agent for refractory nausea because it blocks D2, 5-HT2, 5-HT3, H1, and muscarinic receptors simultaneously and is supported by randomized data for chemotherapy-induced and advanced cancer nausea.

08 Constipation, Malignant Bowel Obstruction & Ascites symptom

Opioid-Induced Constipation

Every patient on opioids needs a scheduled bowel regimen from day one. The standard is a stimulant laxative (senna) plus an osmotic laxative (polyethylene glycol) titrated to a soft bowel movement every 1–2 days. Stool softeners alone (docusate) are ineffective for opioid-induced constipation and have been largely abandoned as monotherapy.

For refractory opioid-induced constipation despite a full bowel regimen, peripherally-acting mu-opioid receptor antagonists (PAMORAs) — methylnaltrexone (Relistor), naloxegol (Movantik), naldemedine (Symproic) — restore bowel function without reversing central analgesia.

Malignant Bowel Obstruction (MBO)

MBO is obstruction of the small or large bowel by intra-abdominal malignancy, most commonly ovarian, colorectal, gastric, or pancreatic cancer. Presentation is crampy abdominal pain, distension, nausea, vomiting (feculent if distal), and absent bowel movements. Management depends on surgical candidacy and goals of care. Nonsurgical management ("medical NG-free regimen") is the classic palliative approach: NPO or clear liquids, IV hydration as goals allow, and the triad of dexamethasone (reduces peritumoral edema), octreotide (reduces GI secretions), and haloperidol or scopolamine for symptoms. Venting PEG or nasogastric decompression is reserved for vomiting refractory to medical management.

Malignant Ascites

Malignant ascites causes abdominal distension, dyspnea, early satiety, and nausea. Therapeutic paracentesis provides rapid symptomatic relief. For recurrent ascites, a tunneled indwelling peritoneal catheter (PleurX) allows home drainage and avoids repeated hospital visits. Diuretics are largely ineffective for peritoneal carcinomatosis ascites (as opposed to cirrhotic ascites).

09 Anorexia, Cachexia & Fatigue symptom

Cancer cachexia is a multifactorial syndrome of ongoing loss of skeletal muscle mass (with or without fat loss) that cannot be fully reversed by conventional nutritional support and leads to progressive functional decline. It is driven by proinflammatory cytokines (TNF, IL-1, IL-6), proteolysis-inducing factor, and altered hypothalamic appetite regulation — not simply by inadequate caloric intake. Artificial nutrition and hydration at end of life do not reverse cachexia and may increase symptom burden; this is a critical counseling point for families.

Pharmacologic appetite stimulation is modestly effective. Dexamethasone 2–4 mg daily improves appetite and sense of wellbeing for weeks at a time. Megestrol acetate (Megace) 160–800 mg/day promotes weight gain but carries VTE risk and adrenal suppression. Mirtazapine addresses appetite + sleep + mood simultaneously and is frequently chosen for multi-symptom patients. Olanzapine low-dose has emerging data for cancer cachexia.

Fatigue is the most common symptom in advanced cancer (80–90% prevalence). Reversible contributors should be addressed first: anemia, hypothyroidism, hypogonadism, depression, insomnia, uncontrolled pain, medication side effects, adrenal insufficiency. Nonpharmacologic management with energy conservation and graded exercise has the strongest evidence. Psychostimulants (methylphenidate 2.5–10 mg BID, modafinil) are used selectively for opioid-related sedation and fatigue, with mixed trial data.

10 Delirium, Anxiety & Depression symptom

Delirium

Delirium occurs in up to 85% of patients in the final days of life (terminal delirium). It presents as acute onset of inattention, disorganized thinking, and altered level of consciousness, and can be hyperactive (agitation, restlessness, hallucinations), hypoactive (somnolence, withdrawal, often missed), or mixed. Reversible precipitants to screen for include medications (opioids, benzodiazepines, anticholinergics), infection, dehydration, hypercalcemia, hyponatremia, hypoxia, urinary retention, constipation, and pain.

Nonpharmacologic management is first-line: reorientation, familiar voices, minimizing room changes, promoting sleep-wake cycle, treating reversible causes. For pharmacologic control of distressing agitation, low-dose haloperidol (0.5–2 mg PO/SC/IV) is the classic agent, with olanzapine, quetiapine, or risperidone as alternatives. Benzodiazepines should generally be avoided because they worsen delirium, except in alcohol/benzodiazepine withdrawal and in refractory terminal agitation where sedation is the goal.

Anxiety & Depression

Anxiety and depression in advanced illness are treated similarly to primary psychiatric conditions but with attention to time horizon. SSRIs (citalopram, sertraline, escitalopram) and SNRIs (duloxetine, venlafaxine) take 4–6 weeks — appropriate for patients with months of prognosis, not days. Mirtazapine is preferred when sleep, appetite, and nausea coexist. Methylphenidate produces mood improvement within 24–48 hours and is an option for patients with short prognosis. For acute anxiety, lorazepam 0.25–1 mg PO/SL/IV provides rapid relief.

Always screen for suicidal ideation and for demoralization distinct from depression; referral to a palliative psychologist, psychiatrist, or chaplain is frequently appropriate. The NCCN Distress Thermometer is a validated one-question screen (0–10) with an accompanying problem checklist.

11 Terminal Phase: Secretions, Agitation, Palliative Sedation end of life

In the final hours to days of life, patients develop a predictable pattern of changes: decreased oral intake, decreased urine output, mottling of extremities, cool skin, Cheyne-Stokes respirations, altered consciousness, and pooled oral secretions producing the death rattle.

Respiratory Secretions ("Death Rattle")

The rattling sound is caused by air moving through secretions in the upper airway in a patient too weak to swallow or clear them. It is often more distressing to family than to the patient. Management: reposition the patient (lateral or semiprone), limit IV fluids, and use an antimuscarinic to dry secretions. The three common anticholinergics are:

• Glycopyrrolate 0.2 mg SC/IV q4h — does not cross BBB, least sedating.
• Scopolamine (hyoscine hydrobromide) 1.5 mg transdermal patch q72h or 0.4 mg SC — crosses BBB, can cause delirium.
• Hyoscyamine (Levsin) 0.125–0.25 mg SL q4h PRN.
• Atropine 1% ophthalmic drops given sublingually 1–2 drops q4h.

Terminal Agitation

Restlessness and agitation at end of life that does not respond to treatment of reversible causes (pain, urinary retention, hypoxia, constipation, medications) and fails neuroleptic trials may require palliative sedation. This is the monitored use of sedating medication to reduce awareness of intolerable suffering that is refractory to standard palliative interventions. The intent is symptom relief, not hastening death — this distinction (proportionality and double effect) is core to the ethical framework and must be documented. Common agents are midazolam continuous infusion, phenobarbital, or propofol in select ICU settings. The EAPC framework for palliative sedation is the standard reference.

12 Other Symptoms: Pruritus, Hiccups, Mucositis, Wounds symptom

• Pruritus — opioid-induced (rotate, low-dose ondansetron, antihistamines), cholestatic (rifampin, ursodeoxycholic acid, naltrexone, sertraline), uremic (gabapentin, UVB), paraneoplastic.
• Hiccups (singultus) — first-line baclofen 5–10 mg TID or metoclopramide; second-line chlorpromazine (only FDA-approved agent), gabapentin, haloperidol.
• Mucositis — oral care, magic mouthwash (viscous lidocaine + diphenhydramine + antacid ± nystatin), systemic opioids for severe pain, nutritional support.
• Oral care — meticulous mouth care every 1–2 hours at end of life prevents thrush, mucosal breakdown, and discomfort. Ice chips, swabs, artificial saliva.
• Pressure injuries — at end of life, the goal is comfort and prevention of worsening rather than healing. Turning every 2–4 hours may be abandoned if repositioning causes distress (Kennedy terminal ulcer is expected at end of life).
• Malignant wounds — odor (metronidazole gel or PO), bleeding (tranexamic acid, Surgicel, epinephrine-soaked gauze), exudate (absorbent dressings, charcoal), pain (topical opioid gels).
• Lymphedema — complete decongestive therapy: manual lymphatic drainage, compression, skin care, exercise. Avoid BP cuffs and IVs in affected limb.
• Dehydration at end of life — parenteral hydration does not prolong life or reduce delirium in imminently dying patients and may worsen secretions, edema, and ascites. Discuss clearly with families.
• Urinary symptoms — retention (catheter), spasm (oxybutynin, B&O suppository), tenesmus (steroids, lidocaine).
• Fever — acetaminophen scheduled, cool cloths; antibiotics only if consistent with goals of care.

13 Prognostication Tools & Performance Scales assessment

Accurate prognostication is central to palliative decision-making. Clinicians are famously optimistic (by a factor of 3–5 in advanced cancer), so structured tools are used to anchor the conversation.

Karnofsky Performance Status (KPS)

Palliative Performance Scale (PPS)

Other Prognostic Tools

• ECOG (Zubrod) — 0 fully active; 1 restricted strenuous activity; 2 ambulatory >50% of day, cannot work; 3 in bed/chair >50% of day; 4 completely disabled, bedbound; 5 dead.
• Palliative Prognostic Score (PaP) — weighted score using clinician prediction, KPS, anorexia, dyspnea, WBC, and lymphocyte %. Stratifies 30-day survival into three groups.
• Palliative Prognostic Index (PPI) — uses PPS, oral intake, edema, dyspnea at rest, and delirium to predict survival of <3 weeks or <6 weeks.
• PRISM (Prospective Risk Index) — predicts hospital mortality in advanced cancer admissions.
• Surprise Question — "Would you be surprised if this patient died in the next year?" A no answer has strong validity for triggering palliative/hospice referral.

14 Goals of Care, SPIKES & Family Meetings communication

A goals-of-care (GOC) discussion aligns medical care with what matters most to the patient. It is a procedure as much as a chest tube is, with preparation, consent, technique, and documentation.

SPIKES Protocol for Breaking Bad News

The Family Meeting

A well-run family meeting follows a predictable flow: introduction and naming of participants; establishing the patient's medical situation and prognosis in shared language; exploring the patient's values and prior expressed wishes; making recommendations aligned with those values; and closing with concrete plans. Recommendations should be framed, not menu-listed ("Based on everything you have told me, I would recommend we focus on comfort and transition to hospice"). The VitalTalk communication framework and Serious Illness Conversation Guide (Ariadne Labs) are the standard references.

15 Code Status, Advance Directives, POLST/MOLST legal

Code Status Terminology

• Full code — all resuscitative efforts including CPR, intubation, defibrillation, vasopressors
• DNR / DNAR / AND — do not resuscitate / do not attempt resuscitation / allow natural death; no CPR, no defibrillation
• DNI — do not intubate; excludes endotracheal intubation but may still include NIV, CPR chest compressions, etc.
• DNR/DNI — the most common combined order
• Comfort care / comfort measures only (CMO) — focus exclusively on comfort; discontinue disease-directed interventions
• Limited trial of therapy — time-limited escalation with predefined goals (e.g., "72-hour trial of pressors, reassess")

Advance Directives vs. POLST/MOLST

An advance directive (living will + durable power of attorney for healthcare) is a legal document expressing the patient's wishes for future care if they become unable to speak for themselves. It is patient-signed, not a medical order, and does not translate directly into an actionable order set at the bedside.

A POLST (Physician Orders for Life-Sustaining Treatment, also called MOLST, POST, or MOST depending on state) is a portable medical order signed by a clinician that follows the patient across care settings. It translates the goals in an advance directive into actionable orders covering CPR, medical interventions, and artificial nutrition. POLST is intended for patients with serious illness or frailty — not the general population. See the National POLST program for state-specific forms.

16 Capacity, Surrogates & Ethics legal

Decisional Capacity

Capacity is a clinical determination (anyone can make it) distinct from competency (a legal determination by a court). Capacity is decision-specific and time-specific. The four-part Appelbaum-Grisso standard asks whether the patient can: (1) understand the relevant information, (2) appreciate how it applies to their situation, (3) reason through the options, and (4) communicate a consistent choice. A patient may lack capacity to refuse dialysis while retaining capacity to name a surrogate.

Surrogate Decision-Making Hierarchy

When a patient lacks capacity, the decision-maker is determined by the state surrogate statute. A typical hierarchy: (1) court-appointed guardian, (2) durable power of attorney for healthcare, (3) spouse, (4) adult child, (5) parent, (6) sibling, (7) other relatives, (8) close friend, (9) attending physician as last resort with ethics consultation. The surrogate uses substituted judgment ("what would the patient want?") first, and best interest only when prior wishes are unknown.

Withholding vs. Withdrawing Treatment

Ethically and legally, withholding a treatment and withdrawing a treatment are equivalent. The decision to discontinue mechanical ventilation, dialysis, artificial nutrition, or vasopressors is not euthanasia; it is a withdrawal of an unwanted or non-beneficial intervention allowing the natural course of disease to proceed. The principle of double effect supports using medications (opioids, benzodiazepines) to treat symptoms during withdrawal even when they may shorten life, provided the intent is symptom relief and the dose is proportionate. Ethics consultation is appropriate for persistent disagreement, concerns about surrogate motivation, or medically inappropriate (futile) treatment requests.

17 Hospice Eligibility & Medicare Criteria hospice

The Medicare Hospice Benefit requires two physician certifications (the hospice medical director and the attending) that the patient has a prognosis of six months or less if the disease runs its normal course. Patients elect hospice and waive Medicare coverage for curative treatment of the terminal diagnosis (not for unrelated problems). Benefit periods are two 90-day periods followed by unlimited 60-day periods, each requiring recertification and a face-to-face visit after the third benefit period per CMS hospice regulations.

Levels of Hospice Care

• Routine home care — the default; care delivered in home or SNF
• Continuous home care — 8–24 hours/day of nursing during a crisis (severe pain, dyspnea, agitation)
• General inpatient (GIP) — inpatient hospice for symptom management that cannot be provided at home
• Respite care — up to 5 consecutive days of inpatient care to give family caregivers a break

Disease-Specific Hospice Eligibility Highlights

18 Palliative Procedures & PCA Management procedures

PCA Management

A patient-controlled analgesia (PCA) pump delivers an opioid via IV or SC route with three programmable settings the scribe must chart at every encounter:

• Continuous (basal) rate — e.g., morphine 1 mg/hr; provides background analgesia
• Demand (bolus) dose — e.g., morphine 1 mg; delivered when the patient presses the button
• Lockout interval — e.g., 10 minutes; minimum time between successful boluses
• 1-hour or 4-hour dose limit — safety ceiling
• PCA tries vs attempts — ratio of button presses to delivered doses; high ratio of tries to given doses suggests inadequate analgesia

Continuous SC infusion is the preferred route at end of life when the patient has lost IV access and cannot swallow. Typical sites are anterior chest, abdomen, or thigh; needle is rotated every 3–7 days. Multiple medications (morphine + haloperidol + midazolam, or "bag of kindness") can be combined in a single syringe driver per compatibility tables.

19 Medications You Must Know medications

20 Classification & Assessment Systems reference

Edmonton Symptom Assessment System (ESAS-r)

The ESAS-r is a nine-symptom self-report tool, each scored 0–10, collected at every palliative visit:

FAST Scale for Dementia (Functional Assessment Staging)

Hospice eligibility for dementia generally requires FAST 7C or greater plus a qualifying complication.

NYHA Heart Failure Class

RASS (Richmond Agitation-Sedation Scale)

21 Abbreviations Master List reference

22 Sample HPI Templates templates

HPI 1 — Inpatient Pain Crisis Consult

HPI 2 — Goals of Care / Family Meeting Consult

HPI 3 — Dyspnea in Advanced Heart Failure

HPI 4 — Terminal Agitation / Imminently Dying

HPI 5 — Outpatient New Palliative Consult

HPI 6 — Hospice Transition Consult

23 References & Sources

Clinical Practice Guidelines

Landmark Trials & Evidence

Diagram & Figure Sources

24 A Final Word

Palliative care scribing is different from any other specialty. Your notes are not just billing documents — they become part of the permanent record of how a patient's last months, weeks, or hours were managed, how decisions were made, and how families were supported. A well-documented goals-of-care conversation prevents unwanted ICU admissions. A clearly charted pain regimen prevents a crisis call at 3 a.m. An accurately quoted family wish protects the patient's autonomy long after they can no longer speak.

Be precise with numbers (opioid doses, ESAS scores, intervals), direct with quotations, and respectful in tone. When a patient says "I am ready," write those exact words. When a daughter says "we don't want her to suffer," write those exact words. The attending can make the medical decisions; your job is to make sure the record tells the truth of what happened in the room. Do that well and you will be invaluable to every team you work with.