Palliative and End-of-Life Care¶

Chapter 13 | Part 1: The Profession of Medicine · Part 1 – The Profession of Medicine · Chapter 13

Key Clinical Points¶

Palliative care is an interdisciplinary approach for all chronically ill patients, not just those in the final days.
Early initiation of palliative care (months before death) improves transition to hospice and family adjustment.
Four core domains of palliative care: physical symptoms, psychological symptoms, social needs, and existential/spiritual needs.
Pain is often considered the 'fifth vital sign,' though its inclusion doesn't automatically improve management outcomes.
Communication of 'bad news' (P-SPIKES) is essential for early hospice referral and improved quality of life.
Advance Care Planning (ACP) should be initiated for all patients regardless of prognosis to ensure patient wishes are honored.
Invasive tests in end-of-life care must be weighed against their benefit-to-burden ratio.
Significant racial disparities exist; minorities are less likely to receive hospice and more likely to receive aggressive interventions.
Specific medications have defined dosing for common end-of-life symptoms: constipation, dyspnea, and delirium.
Management of 'death rattle' involves scopolamine (0.2–0.4 mg SC q4h or 1–3 patches q3d) to reduce secretions.

DEFINITION & CLASSIFICATION¶

• Palliative Care: Interdisciplinary team approach including pain/symptom management, spiritual/psychological care for patients, and support for family caregivers. • Timing: Should begin months before death to focus on symptom relief; transition to hospice occurs in the final months. • Core Domains of Care: ◦ Physical symptoms ◦ Psychological symptoms ◦ Social needs (relationships, caregiving, economic concerns) ◦ Existential or spiritual needs • Philosophy: No longer implies 'giving up' or a lack of treatment; it is an integration with curative therapy where appropriate.

Goals of Care¶

• Definition (Harrison's 22e): Goals range from curing disease to prolonging life, relieving symptoms, adapting to disability, finding peace of mind, or ensuring a peaceful death. • 7-Step Protocol for Determining Goals: 1. Ensure medical information is complete and understood by all parties. 2. Explore patient/family hopes while identifying realistic goals. 3. Share all options with the patient and family. 4. Respond with empathy as expectations change. 5. Create a plan focused on achievable goals. 6. Follow through with the plan. 7. Periodically review and revise goals at every encounter.

EPIDEMIOLOGY¶

• General Statistics (2019): 2,854,838 deaths in the US; ~74% were aged ≥65 years. • Hospice Trends: ◦ 2000: 21.6% of Medicare decedents used hospice. ◦ 2019: 51.6% of Medicare decedents used hospice. ◦ 2021: 60.8% of those aged 85+ were in hospice. • Hospice Demographics: Only 25% of hospice users are cancer patients; growth seen in cardiovascular (29%) and neurocognitive disorders (24%). • Site of Death: 51.5% of hospice decedents died at home, 17.4% in nursing facilities, 12.8% in hospice inpatient units. • Racial Disparities: Minorities are less likely to receive hospice and more likely to receive invasive/aggressive care; e.g., minority patients with pancreatic cancer were 22% less likely to have hospice care before death.

Causes of Death (Table 13-1)¶

• United States (2019): ◦ Heart disease: 659,041 (23.1% all; 25.1% ≥65) ◦ Malignant neoplasms: 599,601 (21.0% all; 20.6% ≥65) ◦ Chronic lower respiratory diseases: 156,979 (5.5% all; 6.3% ≥65) • England and Wales (2019): ◦ Heart disease: 87,095 (16.4% all; 16.7% ≥65) ◦ Malignant neoplasms: 147,419 (27.8% all; 26.5% ≥65) ◦ Chronic lower respiratory diseases: 31,221 (5.9% all; 6.3% ≥65)

Trends in End-of-Life Settings¶

• Figure 13-1: Shows a significant shift over 20 years (2000–2019) from inpatient deaths to hospice facilities and home settings for cancer patients.

CLINICAL FEATURES¶

• Assessment Approach: Focus on physical/psychological symptoms, sources of suffering, and impact on quality of life. • Common Symptoms: Pain (most common), dyspnea, fatigue, nausea, anxiety, depression. • Psychological Screening: ◦ PHQ-9: Screen for depression. ◦ GAD-7: Screen for anxiety. • Social/Existential Assessment: ◦ Assess relationships, financial burden, caregiving needs, and access to care. ◦ Evaluate sense of purpose/meaning and patient perception of respect from medical staff.

Physical Symptoms¶

• Pain: Often termed the 'fifth vital sign'; requires both pharmacological and nonpharmacologic treatment (Table 13-4).

• Key Questions: ◦ "How often is there someone to feel close to?" ◦ "How much help do you need with getting meals/getting around?" ◦ "How much are you able to find meaning since your illness began?"

INVESTIGATIONS & DIAGNOSIS¶

• General Principle: Avoid invasive tests; evaluate even minimally invasive tests for benefit-to-burden ratio. • Physical Exam: Omit uncomfortable maneuvers unlikely to change management. • Validated Assessment Tools (Table 13-4): ◦ Revised Edmonton Symptom Assessment Scale ◦ Condensed Memorial Symptom Assessment Scale (MSAS) ◦ MD Anderson Brief Symptom Inventory ◦ Rotterdam Symptom Checklist ◦ Symptom Distress Scale ◦ Patient-Reported Outcomes Measurement Information System ◦ Interactive Symptom Assessment and Collection (ISAAC) tool.

MANAGEMENT & TREATMENT¶

Communication Strategy (P-SPIKES - Table 13-2): • P (Preparation): Mentally prepare, review info, plan emotional support. • S (Setting): Ensure appropriate environment for serious discussion. • P (Patient's Perception): Use open-ended questions to gauge understanding. • I (Invitation/Info Needs): Identify what the patient wants to know. • K (Knowledge of Condition): Provide news sensitively; don't 'dump' info. • E (Empathy/Exploration): Identify cause of emotion and empathize. • S (Summary/Planning): Delineate next steps, provide rationale, schedule follow-up if needed.
Pain Management (Flowchart 1): Step 1: Assess Pain Intensity → Determine Category. Step 2: Identify Treatment Path: • MILD: Manage with non-opioids → NSAIDs and/or Acetaminophen. • MODERATE: Requires combination → Opioids (Codeine, Tramadol) + NSAIDs. • SEVERE: High potency opioids → Morphine, Hydromorphone, Fentanyl, or Hydrocodesin. Step 3: Evaluate Control → If 'DIFFICULT TO CONTROL' → Specialist Consultation (Oncology).
Specific Symptom Management: • Constipation (Table 13-5): ◦ Stimulant laxatives: Prune juice (120–240 mL/d); Senna (2–8 tablets PO bid); Bisacodyl (5–15 mg/d PO, PR; 15–30 mL PO q4–8h; 15–30 mL/d PO; 125–250 mL/d PO). ◦ Stool softeners: Sodium docusate (300–600 mg/d PO); Calcium docusate (300–600 mg/d PO; 10–15 PR qd; PR qd). • Dyspnea (Table 13-6): ◦ Weak opioids: Codeine (30 mg PO q4h); Hydrocodone (5–10 mg PO q4h; 30–50% of baseline opioid dose q4h). ◦ Anxiolytics: Lorazepam (0.5–2.0 mg PO/SL/IV qh then q4–6h); Clonazepam (0.25–2.0 mg PO q12h); Midazolam (0.5 mg IV q15min). • Delirium (Table 13-7): ◦ Neuroleptics: Haloperidol (0.5–5 mg q2–12h, PO/IV/SC/IM); Thioridazine (10–75 mg q4–8h, PO); Chlorpromazine (12.5–50 mg q4–12h, PO/IV/IM). ◦ Anxiolytics: Lorazepam (0.5–2 mg q1–4h, PO/IV/IM); Midazolam (1–5 mg/h continuous infusion, IV/SC).
End-of-Life Management (Table 13-9): • Profound Fatigue: Reassure family that it won't respond to intervention; use air mattress. • Dehydration: Reassure family that dehydration doesn't cause suffering; avoid IV fluids as they may worsen dyspnea/edema. • Death Rattle (Noisy Breathing): Reassure family it is secretions, not choking. → Intervention: Scopolamine (0.2–0.4 mg SC q4h or 1–3 patches q3d) + Repositioning; Do NOT suction. • Dry Mucosal Membranes: Baking soda mouthwash/saliva prep q15–30 min; Topical nystatin for candidiasis; Petroleum jelly q60–90 min; Ophthalmic lubricants q4h or artificial tears q30 min.

Advance Care Planning (Table 13-3)¶

• Process: 1. Introduce: Ask what they know/if they have a directive. 2. Identify Physician's Role: State that you perform ACP for all patients regardless of prognosis. 3. Explain Goals: Emphasize empowering the patient and ensuring proxy understands preferences. 4. Provide Literature: Offer state-specific forms (nhpco.org). 5. Elicit Preferences: Discuss specific scenarios, thresholds for withdrawing/withholding, and proxy roles. 6. Review & Document: Ensure consistency between patient and proxy; sign and place in medical record. 7. Update: Periodically review with major changes in health status.

Legal Definitions (Table 13-8)¶

• Voluntary active euthanasia: Intentionally administering medications to cause death with informed consent (Legal in Netherlands, Belgium, Luxembourg, Canada, Colombia, Spain, Western Australia, New Zealand). • Passive euthanasia: Withholding or withdrawing life-sustaining medical treatments (Allowed everywhere). • Assisted Suicide: Physician provides medication for the patient to use to commit suicide.

KEY PEARLS & HIGH-YIELD POINTS¶

• Palliative Care Timing: Start early (months before death) to allow for a smoother transition to hospice. • Communication: Use P-SPIKES to manage 'bad news' and improve patient outcomes. • Pain Management: Follow the tiered approach: Mild → NSAIDs/Acetaminophen Moderate → Opioids + NSAIDs Severe → High potency (Morphine, Hydromorphone, Fentanyl, Hydrocodesin). • Death Rattle: Use Scopolamine (0.2–0.4 mg SC q4h) to manage secretions; avoid suctioning. • Advancement Planning: Perform for all patients regardless of age or prognosis to ensure the patient's wishes are documented.

Reference Tables¶

TABLE 13-1 Ten Leading Causes of Death in the United States and Britain¶

Harrison's 22e, p.75

CAUSE OF DEATH	UNITED STATES (2019)		ENGLAND AND WALES (2019)
	NUMBER OF DEATHS, ALL AGES (%)	NUMBER OF DEATHS, PEOPLE ≥65 YEARS OF AGE	NUMBER OF DEATHS, ALL AGES (%)	NUMBER OF DEATHS, PEOPLE ≥65 YEARS OF AGE
All deaths	2,854,838	2,117,332	530,841	449,047
	659,041 (23.1)	531,583 (25.1)	87,095 (16.4)
Malignant neoplasms	599,601 (21.0)	435,462 (20.6)	147,419 (27.8)	118,982 (26.5)
	156,979 (5.5)	133,246 (6.3)	31,221 (5.9)
Accidents	173,040 (6.1)	60,527 (2.9)	15,141 (2.9)	8999 (2.0)
	150,005 (5.3)	129,193 (6.1)	29,816 (5.6)
Alzheimer’s disease	121,499 (4.3)	120,090 (5.7)	20,400 (3.8)	20,279 (4.5)
	87,647 (3.1)	62,397 (2.9)	6528 (1.2)
Influenza and pneumonia	49,783 (1.7)	40,399 (1.9)	26,398 (5.0)	24,269 (5.4)
	51,565 (1.8)	42,230 (2.0)	3575 (0.7)
Intentional self-harm	47,511 (1.7)	—	4832 (0.9)	751 (0.2)
Inpatient Hospice facility Decedent’s home
	Inpatient Hospice facility Decedent’s home

TABLE 13-2 Elements of Communicating Bad News—The P-SPIKES Approach ACRONYM P¶

Harrison's 22e, p.77

ACRONYM	STEPS	AIM OF THE INTERACTION	PREPARATIONS, QUESTIONS, OR PHRASES
P	Preparation	Mentally prepare for the interaction with the patient and/or family.	Review what information needs to be communicated. Plan how you will provide emotional support. Rehearse key steps and phrases in the interaction.
	Setting of the interaction	Ensure the appropriate setting for a serious and potentially emotionally charged discussion.
P	Patient’s perception and preparation	Begin the discussion by establishing the baseline and whether the patient and family can grasp the information. Ease tension by having the patient and family contribute.	Start with open-ended questions to encourage participation. Possible questions to use: What do you understand about your illness? When you first had symptom X, what did you think it might be? What did Dr. X tell you when Dr. X sent you here? What do you think is going to happen?
	Invitation and information needs	Discover what information needs the patient and/or family have and what limits they want regarding the bad information.
K	Knowledge of the condition	Provide the bad news or other information to the patient and/or family sensitively.	Do not just dump the information on the patient and family. Check for patient and family understanding. Possible phrases to use: I feel badly to have to tell you this, but… Unfortunately, the tests showed… I’m afraid the news is not good…
	Empathy and exploration	Identify the cause of the emotions— e.g., poor prognosis. Empathize with the patient’s and/or family’s feelings. Explore by asking open-ended questions.
S	Summary and planning	Delineate for the patient and the family the next steps, including additional tests or interventions.	It is the unknown and uncertain that can increase anxiety. Recommend a schedule with goals and landmarks. Provide your rationale for the patient and/or family to accept (or reject). If the patient and/or family are not ready to discuss the next steps, schedule a follow-up visit.

TABLE 13-3 Steps in Advance Care Planning STEP Introduce advance care planning¶

Harrison's 22e, p.78

STEP	GOALS TO BE ACHIEVED AND MEASURES TO COVER	USEFUL PHRASES OR POINTS TO MAKE
Introduce advance care planning	Ask the patient what they know about advance care planning and if they have already completed an advance care directive.	I’d like to talk with you about something I try to discuss with all my patients. It’s called advance care planning. In fact, I feel that this is such an important topic that I have done this myself. Are you familiar with advance care planning or living wills?
	Indicate that you as a physician have completed advance care planning.	Have you thought about the type of care you would want if you ever became too sick to speak for yourself? That is the purpose of advance care planning.
	Indicate that you try to perform advance care planning with all patients regardless of prognosis.	There is no change in health that we have not discussed. I am bringing this up now because it is sensible for everyone, no matter how well or ill, old or young.
	Explain the goals of the process as empowering the patient and ensuring that you and the proxy understand the patient’s preferences.	Have many copies of advance care directives available, including in the waiting room, for patients and families.
	Provide the patient relevant literature, including the advance care directive that you prefer to use.	Know resources for state-specific forms (available at www.nhpco.org).
	Recommend the patient identify a proxy decision-maker who should attend the next meeting.
	Affirm that the goal of the process is to follow the patient’s wishes if the patient loses decision-making capacity.
	Elicit the patient’s overall goals related to health care. Elicit the patient’s preferences for specific interventions in a few salient and common scenarios. Help the patient define the threshold for withdrawing and withholding interventions. Define the patient’s preference for the role of the proxy.
Review the patient’s preferences	After the patient has made choices of interventions, review them to ensure they are consistent and the proxy is aware of them.
	Formally complete the advance care directive and have a witness sign it.
	Provide a copy for the patient and the proxy.
	Insert a copy into the patient’s medical record and summarize it in a progress note.
Update the directive	Periodically, and with major changes in health status, review the directive with the patient and make any modifications.
	The directive goes into effect only when the patient becomes unable to make medical decisions for themself.
	Reread the directive to be sure about its content.
	Discuss your proposed actions based on the directive with the proxy.

TABLE 13-4 Common Physical and Psychological Symptoms of Terminally Ill Patients¶

Harrison's 22e, p.79

PHYSICAL SYMPTOMS	PSYCHOLOGICAL SYMPTOMS
Pain	Anxiety
Dyspnea	Hopelessness
Dry mouth	Irritability
Nausea and vomiting	Confusion
Cough	Loss of libido
Itching
Dysphagia
Fecal and urinary incontinence

TABLE 13-5 Medications for the Management of Constipation INTERVENTION Stimulant laxatives¶

Harrison's 22e, p.82

INTERVENTION	DOSE	COMMENT
Stimulant laxatives		These agents directly stimulate peristalsis and may reduce colonic absorption of water.
Prune juice	120–240 mL/d	Work in 6–12 h.
Senna (Senokot)	2–8 tablets PO bid
Bisacodyl	5–15 mg/d PO, PR
	15–30 mL PO q4–8h
	15–30 mL/d PO
	125–250 mL/d PO
Stool softeners		These agents work by increasing water secretion and as detergents, increasing water penetration into the stool.
Sodium docusate (Colace)	300–600 mg/d PO	Work in 1–3 days.
Calcium docusate	300–600 mg/d PO
	10–15 PR qd
	PR qd

TABLE 13-6 Medications for the Management of Dyspnea INTERVENTION Weak opioids¶

Harrison's 22e, p.83

INTERVENTION	DOSE	COMMENTS
Weak opioids		For patients with mild dyspnea
Codeine (or codeine with 325 mg acetaminophen)	30 mg PO q4h	For opioid-naïve patients
Hydrocodone	5 mg PO q4h
	5–10 mg PO q4h
	30–50% of baseline opioid dose q4h
	5–10 mg PO q4h
	1–2 mg PO q4h
Anxiolytics		Give a dose every hour until the patient is relaxed; then provide a dose for maintenance
Lorazepam	0.5–2.0 mg PO/SL/IV qh then q4–6h
Clonazepam	0.25–2.0 mg PO q12h
Midazolam	0.5 mg IV q15min

TABLE 13-7 Medications for the Management of Delirium INTERVENTIONS Neuroleptics¶

Harrison's 22e, p.86

INTERVENTIONS	DOSE
Neuroleptics
Haloperidol	0.5–5 mg q2–12h, PO/IV/SC/IM
Thioridazine	10–75 mg q4–8h, PO
Chlorpromazine	12.5–50 mg q4–12h, PO/IV/IM
Anxiolytics
Lorazepam	0.5–2 mg q1–4h, PO/IV/IM
Midazolam	1–5 mg/h continuous infusion, IV/SC

TABLE 13-8 Definitions of Physician-Assisted Suicide and Euthanasia TERM Voluntary active euthanasia¶

Harrison's 22e, p.89

TERM	DEFINITION	LEGAL STATUS
Voluntary active euthanasia	Intentionally administering medications or other interventions to cause the patient’s death with the patient’s informed consent	Netherlands, Belgium, Luxembourg, Canada, Colombia, Spain, Western Australia, New Zealand
	Intentionally administering medications or other interventions to cause the patient’s death when the patient was competent to consent but did not—e.g., the patient may not have been asked
Passive euthanasia	Withholding or withdrawing life-sustaining medical treatments from a patient to let the patient die (terminating life-sustaining treatments)	Everywhere
	A physician provides medications or other interventions to a patient with the understanding that the patient can use them to commit suicide

TABLE 13-9 Managing Changes in the Patient’s Condition during the Final Days and Hours¶

Harrison's 22e, p.91

CHANGES IN THE PATIENT’S CONDITION	POTENTIAL COMPLICATION	FAMILY’S POSSIBLE REACTION AND CONCERN	ADVICE AND INTERVENTION
Profound fatigue	Bedbound with development of pressure ulcers that are prone to infection, malodor, and pain, and joint pain	Patient is lazy and giving up.	Reassure family and caregivers that terminal fatigue will not respond to interventions and should not be resisted. Use an air mattress if necessary.
	None	Patient is giving up; patient will suffer from hunger and will starve to death.
Dehydration	Dry mucosal membranes (see below)	Patient will suffer from thirst and die of dehydration.	Reassure family and caregivers that dehydration at the end of life does not cause suffering because patients lose consciousness before any symptom distress. Intravenous hydration can worsen symptoms of dyspnea by pulmonary edema and peripheral edema as well as prolong the dying process.
	Inability to swallow oral medications needed for palliative care
“Death rattle”— noisy breathing		Patient is choking and suffocating.	Reassure the family and caregivers that this is caused by secretions in the oropharynx and the patient is not choking. Reduce secretions with scopolamine (0.2–0.4 mg SC q4h or 1–3 patches q3d). Reposition patient to permit drainage of secretions. Do not suction. Suction can cause patient and family discomfort and is usually ineffective.
		Patient is suffocating.
Urinary or fecal incontinence	Skin breakdown if days until death Potential transmission of infectious agents to caregivers	Patient is dirty, malodorous, and physically repellent.	Remind family and caregivers to use universal precautions. Frequent changes of bedclothes and bedding. Use diapers, urinary catheter, or rectal tube if diarrhea or high urine output.
	Day/night reversal Hurt self or caregivers	Patient is in horrible pain and going to have a horrible death.
Dry mucosal membranes	Cracked lips, mouth sores, and candidiasis can also cause pain Odor	Patient may be malodorous, physically repellent.	Use baking soda mouthwash or saliva preparation q15–30 min. Use topical nystatin for candidiasis. Coat lips and nasal mucosa with petroleum jelly q60–90 min. Use ophthalmic lubricants q4h or artificial tears q30 min.