Hospice Care: Primary Approach to Symptom Management and Quality of Life
The primary approach to managing symptoms and improving quality of life for hospice-eligible patients is intensive, multidisciplinary symptom management focused on comfort, with aggressive pharmacologic treatment of pain, dyspnea, anxiety, and other distressing symptoms—not withdrawal of medications—combined with comprehensive psychosocial and spiritual support delivered by an interdisciplinary team. 1, 2
Core Principle: Comfort Measures Does Not Mean Medication Withdrawal
The most dangerous misconception in hospice care is equating "comfort measures only" with stopping medications. 1 "Comfort measures only" refers to discontinuing life-prolonging interventions, not symptom management medications—the goal shifts from cure to comfort, requiring maintaining and often intensifying medications that relieve suffering. 1
What to Continue and Intensify
Medications that must continue or be escalated include: 1
- Opioids for pain and dyspnea (morphine 2.5-10 mg PO q2h PRN if opioid-naive, or 1-3 mg IV q2h PRN) 3
- Anxiolytics for anxiety and agitation (lorazepam 0.5-1 mg PO q4h PRN if benzodiazepine-naive) 3
- Anticholinergics for secretions (scopolamine 0.4 mg subcut q4h PRN or atropine 1% ophthalmic solution 1-2 drops SL q4h PRN) 3
- Antiemetics for nausea 1
- Medications for pruritus, delirium, and other distressing symptoms 1
The Doctrine of Double Effect
The American College of Chest Physicians endorses using the "doctrine of double effect" for end-stage patients, which morally justifies medications that relieve suffering even if they theoretically might hasten death—the intent is symptom relief, not death. 3, 1 This is particularly important for managing severe dyspnea with opioids, where the intended effect is relief of breathlessness, not hastening death. 3
Eligibility and Timing: The Critical 6-Month Window
Certification Requirements
Hospice eligibility requires physician certification that the patient has a terminal illness with an estimated prognosis of 6 months or less if the disease runs its natural course. 2, 4 The patient must agree in writing to receive hospice care focused on comfort rather than curative treatment. 4 Importantly, patients do not need a "do not attempt resuscitation" order to enroll in hospice. 4
The Crisis of Late Referrals
The median hospice length of stay is only 17-18 days, with 36% of patients dying within 7 days of admission—this represents a critical failure to provide adequate hospice care. 2 The American College of Chest Physicians estimates it takes 80-90 days for hospice to reach its full impact in providing support to dying patients and their families. 3
Earlier hospice enrollment is associated with longer survival (29 days longer on average), reduced hospitalizations, fewer ICU admissions, and improved quality of life for both patients and caregivers. 3, 2
When to Initiate Hospice Discussions
The NCCN Guidelines recommend scheduling a dedicated "hospice information visit" when prognosis reaches 6-12 months, not waiting until death is imminent. 2 Objective triggers for hospice discussion include: 2
- Diagnosis of advanced disease
- ICU admission
- Hospital admission requiring mechanical ventilation
- Initiation of dialysis
- Functional decline indicating 6-12 month prognosis
Interdisciplinary Team Approach
Hospice care is delivered by an interdisciplinary team including: 5
- Family physicians and hospice medical directors
- Nurses
- Social workers
- Counselors
- Home health aides
- Trained volunteers
This team provides comprehensive comfort care including medical management, pain control, and emotional and spiritual support tailored to patient needs and wishes. 5
Symptom-Specific Management Algorithms
Dyspnea Management by Life Expectancy
For patients with months-to-weeks life expectancy: 3
- If opioid-naive: morphine 2.5-10 mg PO q2h PRN or 1-3 mg IV q2h PRN
- If on chronic opioids: increase dose by 25%
- Add benzodiazepines if dyspnea associated with anxiety (lorazepam 0.5-1 mg PO q4h PRN)
- Consider noninvasive positive-pressure ventilation (CPAP, BiPAP) for severe reversible conditions
For dying patients (weeks-to-days): 3
- Continue opioids and benzodiazepines
- Reduce excessive secretions with anticholinergics
- Provide fans and oxygen if hypoxic with subjective relief
- Consider time-limited trial of mechanical ventilation only if aligned with patient preferences and reversibility is possible
Pain Management
Use the WHO Pain Ladder to systematically quantify, treat, and titrate pain with both pharmacologic and nonpharmacologic approaches. 6 For acute progressive symptoms, more aggressive titration may be required. 3
Palliative Sedation for Refractory Symptoms
Continuous palliative sedation should only be considered for patients with terminal illness and life expectancy of weeks or less who suffer refractory physical or psychological symptoms despite optimal palliative care. 3, 1 This is differentiated from euthanasia because the intent is symptom relief, not death. 3
A proposed objective measure for ethical use: estimated time to death from disease should be less than or equal to predicted time to death from sedation-induced dehydration. 3
Common Pitfalls to Avoid
Physician overestimation of survival is the primary barrier to timely hospice referral. 3 Many physicians delay referral until death is near, reducing the potential value of hospice services. 3
The misconception that hospice care "hastens death" is not supported by evidence—in fact, hospice patients tend to have better hopefulness and longer survival. 3
Prognostic uncertainty should not serve as a barrier to referral. 7 The requirement for 6-month prognosis certification demands greater prognostic certainty than clinicians can reasonably ascertain, yet this should not prevent appropriate referrals. 7
Settings of Care
Hospice care can be delivered in: 5
- Patient's home (most common)
- Long-term care facilities
- Dedicated hospice facilities
- Hospitals when needed for symptom control
Quality Outcomes
Hospice care is associated with: 5, 8
- Better symptom relief, particularly pain and symptom control in inpatient hospice settings
- Better achievement of patient end-of-life wishes
- Higher overall rating of quality of end-of-life care compared with standard care
- Greater likelihood of dying at home with family satisfaction
- Lower healthcare costs