How should I document a concise summary for a terminal patient (e.g., a 78‑year‑old male with advanced cancer, end‑stage heart failure, COPD, and dementia, bedridden, limited oral intake, altered mental status, prognosis of days‑to‑weeks) that includes demographics, primary diagnosis and comorbidities, functional status, estimated prognosis, goals of care (comfort‑focused, hospice enrollment, do‑not‑resuscitate order, advance directives), symptom burden (pain, dyspnea, delirium, nausea, anxiety), specific palliative medication regimen with doses and routes, recent objective data (lab values, imaging, vital signs) and any changes over the past 24‑48 hours, and a brief plan for comfort‑oriented interventions?

Documentation of a Dying Patient Summary

A comprehensive summary for a terminal patient should be structured to include demographics, diagnosis and comorbidities, functional status, estimated prognosis (weeks to days), documented goals of care with specific advance directives, current symptom burden with severity ratings, palliative medication regimen with exact doses and routes, recent objective data, and a comfort-focused plan—all documented clearly in the medical record to ensure continuity of care and alignment with patient values. 1

Essential Components of the Summary

Patient Demographics and Disease Status

• Document age, primary diagnosis (e.g., advanced cancer), and all significant comorbidities (e.g., end-stage heart failure, COPD, dementia) that contribute to the terminal prognosis 1
• Record current functional status using standardized measures: ECOG performance status ≥3 or Karnofsky Performance Score ≤50 indicates patients are likely in their last 6 months of life 1
• Include specific indicators of terminal phase: bedridden status, limited oral intake, altered mental status, cachexia, and any organ failure 1

Prognosis Documentation

• Clearly state estimated life expectancy using the framework of "years to months," "months to weeks," or "weeks to days" to guide appropriate interventions 1
• Document that the patient has been identified as dying (weeks to days prognosis) to ensure all team members understand the care focus should be intensive palliative care, not disease-modifying treatment 1
• Note specific prognostic indicators present: decreased performance status, delirium, malignant effusions, liver or kidney failure, or other serious comorbid conditions 1

Goals of Care and Advance Directives

• Document all advance care planning discussions including when they occurred and who participated 1
• Specify code status clearly: DNR (do-not-resuscitate) orders should be documented in 89% or more of terminal patients 2
• Record the patient's designated surrogate decision maker and confirm they understand the patient's goals, values, and care preferences 1
• Document hospice enrollment status and whether palliative care consultation has been obtained 1
• Clearly state the shift in treatment focus: from prolonging life to maintaining quality of life and comfort 1
• Avoid demeaning language: never describe palliative care as "just hospice" but rather as intensive comfort-focused care 1

Symptom Assessment and Burden

• Systematically document all symptoms with severity ratings: pain, dyspnea, delirium, nausea, anxiety, anorexia, cachexia, constipation, fatigue, and insomnia 1
• For non-communicative patients, document assessment using distress markers and physical signs rather than patient report 1
• Specify which symptoms are controlled versus refractory to current management 2
• Common symptom prevalence to document: moderate/severe pain (54%), dyspnea (53%), and anxiety (62%) are typical at baseline in terminal illness 3

Palliative Medication Regimen

• List all medications with exact doses, routes, and frequency 1, 4

For dyspnea management:

• Morphine 2.5-10 mg PO every 2 hours PRN or 1-3 mg IV every 2 hours PRN for opioid-naïve patients 4, 5, 6
• For patients on chronic opioids, document 25% dose increases as needed 5, 6
• Lorazepam 0.5-1 mg PO/IV every 4 hours PRN if anxiety accompanies dyspnea 4, 5, 6

For respiratory secretions (death rattle):

• Scopolamine 0.4 mg subcutaneous every 4 hours PRN or 1.5 mg patches (1-3 patches every 3 days) 4, 6
• Glycopyrrolate 0.2-0.4 mg IV/subcutaneous every 4 hours PRN 4, 6
• Atropine 1% ophthalmic solution 1-2 drops sublingual every 4 hours PRN 4, 6

For pain:

• Document aggressive opioid titration for moderate/severe pain 4, 6
• Critical documentation: "Opioid doses should not be reduced solely for decreased blood pressure, respiration rate, or level of consciousness when necessary for adequate management of dyspnea and pain" 4, 6

For anxiety:

• Benzodiazepines (lorazepam, clonazepam) with specific doses 1

For nausea:

• Metoclopramide or ondansetron with doses 1

Anticipatory medications should be prescribed with multiple routes (oral/IV/subcutaneous) available 1

Recent Objective Data and Changes

• Document vital signs trends over the past 24-48 hours, noting any decline in blood pressure or development of bradypnea 4
• Record relevant laboratory values if obtained, though recognize that aggressive testing is not indicated in dying patients 1
• Note any imaging findings that informed prognosis or symptom management decisions 1
• Document functional decline: changes in ability to eat, communicate, or maintain consciousness 1
• Specify any sentinel events that triggered end-of-life care conversations: cancer progression, decline in functional status, increased hospitalizations, or consideration of high-burden interventions 1

Comfort-Focused Care Plan

• Document specific non-pharmacologic interventions: fans directed at patient's face for dyspnea relief, cooler room temperatures, positioning for comfort 4, 6
• Specify oxygen use: continue only if patient reports subjective relief, not based on saturation numbers 4, 5
• Document withdrawal of non-beneficial treatments: discontinuation of anticancer therapy, overly aggressive nutritional support, or mechanical ventilation 1, 5
• Note that normal drug therapy may be withdrawn in 64% of terminal patients to focus on comfort 2
• Document plan for managing the dying process: education provided to family about agonal breathing, reassurance that patient is not suffering, and availability of healthcare team until death 4

Family and Caregiver Support

• Document family education provided about the dying process and what to expect 1, 4
• Record anticipatory grief support and arrangements to ensure patient does not die alone unless that is their preference 1
• Note cultural, spiritual, and religious considerations that affect end-of-life care preferences 1
• Document social support assessment: competent primary caregiver identified, safe environment confirmed, access to necessary medications ensured 1

Critical Documentation Pitfalls to Avoid

• Never document vague prognosis statements: use the specific framework of weeks-to-days for dying patients 1
• Do not document fear of respiratory depression as a reason to withhold opioids: this concern is unsupported when drugs are properly titrated 4, 5
• Avoid documenting that comfort measures will "hasten death": properly dosed symptom control does not shorten life, and the principle of double effect ethically justifies aggressive symptom management 5
• Do not document continuation of disease-modifying treatments in patients with weeks-to-days prognosis—this contradicts guideline recommendations 1
• Never omit documentation of end-of-life conversations: these must be recorded in the medical record to ensure all team members understand the care plan 1

Special Considerations for Complex Cases

Patients with Dementia and Terminal Illness

• Document that dementia patients have 42% access to specialized palliative care versus 76% for cancer alone—advocate for appropriate referral 7
• Note that assessment requires distress markers rather than patient self-report in non-communicative dementia patients 1

Documentation of Refractory Symptoms

• If symptoms remain refractory despite optimal management, document consideration of palliative sedation after consultation with palliative care specialists 1, 6
• Record careful discussion with patient (if able) and family about goals of palliative sedation 1

Ensuring Continuity

• Document that this summary should be reviewed and updated as the patient's condition changes, recognizing that goals and expectations may evolve 1
• Specify the plan for ongoing communication among patient, family, and healthcare team 1