What is the best approach for managing end of life care?

Managing End-of-Life Care: A Structured Approach

The best approach to managing end-of-life care centers on three core pillars: systematic symptom assessment and management, comprehensive advance care planning with skilled facilitators, and multidisciplinary team coordination—all while maintaining continuous communication with patients and families about goals of care. 1

Regular Symptom Assessment and Management

Clinicians must routinely and periodically screen all patients with serious illness for pain, dyspnea, and depression at every clinical encounter. 1, 2

Pain Management

• Start with NSAIDs and opioids as first-line agents, with morphine being the essential medication for quality end-of-life care requiring careful titration based on symptom severity. 2, 3
• For cancer patients with bone pain, particularly those with breast cancer or myeloma, add bisphosphonates as they demonstrate specific effectiveness for this indication. 2, 3
• Titrate opioid doses upward based on pain severity without arbitrary ceiling doses, monitoring for respiratory depression but recognizing that appropriate dosing rarely causes clinically significant respiratory compromise when properly managed. 3

Dyspnea Management

• Administer opioids for patients with severe, unrelieved dyspnea in cancer and cardiopulmonary disease—this is the primary intervention. 2, 3
• Provide oxygen therapy specifically for short-term relief of hypoxemia (not for non-hypoxemic dyspnea). 2, 3
• Use β-agonists specifically for dyspnea in chronic obstructive pulmonary disease. 2

Depression Management

• Initiate tricyclic antidepressants or selective serotonin reuptake inhibitors for pharmacologic management. 2, 3
• Simultaneously offer psychosocial interventions, particularly for cancer patients. 2, 3
• Reassess depression symptoms at each visit as part of routine care for patients with serious chronic diseases. 2

Advance Care Planning: The Critical Framework

Advance care planning must occur early for all patients with serious illness and include trained facilitators, key decision makers, and address care across all settings. 1, 3

Essential Elements to Address

The advance care planning discussion must specifically cover: 2, 3

• Identification of surrogate decision makers (proxy or agent)
• Resuscitation preferences (CPR status)
• Emergency treatment preferences
• Mechanical ventilation preferences
• Enteral/intravenous feeding and hydration decisions
• Specific issues related to the patient's clinical course and disease trajectory

Timing and Process

• Initiate these discussions early in the course of serious illness, not when death is imminent—delaying until end-of-life negatively impacts patient outcomes. 3
• Use extensive multicomponent interventions rather than limited interventions, as individuals are significantly more likely to complete advance directives with comprehensive approaches. 1
• Employ trained facilitators (including palliative care providers, social workers trained in care planning, or ethics teams) to conduct goal-oriented interviews. 1
• Document all advance care planning discussions in the patient's chart and complete hospital-specific forms with signatures from the patient or decision-maker and a healthcare team member. 1

Ensuring Continuity

A critical pitfall is that advance directives often fail to inform later care due to poor documentation or communication. 1

• Ensure advance directives are relevant and available across all venues where the patient may receive care. 1
• Use proven transport mechanisms like Physician Orders for Life-Sustaining Treatment (POLST) that convert patient-centered treatment goals into actionable medical orders transferable between venues. 1
• Reassess care plans when significant clinical changes occur, such as worsening health status or transitions between care settings. 1, 2, 3

Communication Strategy: The Foundation

Initiating and Conducting Discussions

Physicians must initiate end-of-life discussions—most patients and families expect this and want their physician to start the conversation. 4

The discussion should address: 1

• The patient's general condition and prognosis with clear, consistent information to help develop realistic expectations
• Goals of care, including the relative importance of quality of life compared with length of life
• Medical appropriateness of various therapies (feeding tubes, hydration, treatment of current illness, ICU admission, ventilation, CPR)
• The patient's values, wishes, and life priorities
• Spiritual, existential, and cultural issues through collaboration with pastoral care, professional translators, and cultural community representatives

Specific Approach for Catastrophic Events

For stroke patients or those with catastrophic illness: 1

• Approach patients and families early to participate in advance care planning
• Discuss the appropriateness of life-sustaining measures including mechanical ventilation and enteral/intravenous feeding
• Reassess all medications and recommend cessation of medications no longer necessary when goals shift to comfort measures only (antiplatelets, anticoagulants, statins, hypoglycemics)
• Provide ongoing oral care

Family Involvement

• Allow and encourage family members to be with the patient throughout the dying process. 2
• Conduct advance care planning discussions with participation of significant family members when the patient permits. 1
• Keep families informed about the patient's well-being, what to expect, and when death is imminent. 1, 2
• Provide supportive care including listening to concerns, attention to grief, and regular information updates. 2

Multidisciplinary Team Coordination

A multidisciplinary team approach involving nurses, social services, and specialists improves quality of life, functional status, and reduces hospital readmissions and costs. 1, 3

Team Composition and Roles

• Coordinate between primary physician and specialists with nurse case management. 1
• Involve palliative care specialists early—not just at end-of-life—as early consultation improves both quality and duration of life. 3
• Ensure the interprofessional team has appropriate communication skills and knowledge to address physical, spiritual, psychological, ethical, and social needs. 1
• When local expertise is limited, use telephone consultation with palliative medicine experts. 1

Service Coordination

• Implement continuity of care mechanisms and service coordination across all care settings. 1
• For patients at home at risk of catastrophic events, prepare sedating medications in advance with a clear plan for emergency administration. 2
• Consider inpatient care if family members feel unable to administer emergency medications. 2

Caregiver Support: An Essential Component

Routinely and periodically screen adult caregivers for practical and emotional needs while caring for a patient near the end of life. 1, 2

Provide: 2

• Supportive care including listening to concerns and attention to grief
• Regular information updates about the patient's condition
• Reassurance that other treatment methods have been sufficiently tried
• Opportunity to meet after the patient's death to express grief and discuss concerns
• Bereavement services extending up to one year after the patient's death 3

Evidence shows individualized multicomponent interventions are more beneficial than limited caregiver interventions. 1

Palliative Sedation for Refractory Symptoms

When symptoms remain refractory despite optimal management: 2

• Consider palliative sedation for refractory symptoms at the end of life
• Continue medications for symptom palliation unless ineffective or causing distressing side effects
• For respite sedation, administer the lowest effective dose of sedative agent
• Monitor routine physiological parameters
• Obtain consent or assent from the patient when possible, discussing aims, benefits, risks, and alternatives 1
• For terminally ill patients in severe distress without capacity, provision of comfort measures including palliative sedation should be considered standard practice 1

Medication Reassessment

When goals of care shift to comfort measures only: 1

• Reassess all medications
• Recommend cessation of medications no longer necessary (antiplatelets, anticoagulants, statins, hypoglycemics)
• Continue symptom-directed medications (opioids for pain/dyspnea, antidepressants, anxiolytics)

Common Pitfalls to Avoid

• Delaying palliative care consultation until end-of-life—this negatively impacts outcomes; palliative care can begin at diagnosis and be provided concurrently with curative treatments. 3
• Undertreating dyspnea due to concerns about respiratory depression from opioids—appropriate dosing rarely causes clinically significant respiratory compromise. 3
• Failing to complete advance care planning early—this leads to inadequate end-of-life care and treatment inconsistent with patient wishes. 3
• Not ensuring advance directives are available across care venues—studies show care is inconsistent with advance directives 25% of the time when not properly communicated. 1
• Focusing only on resuscitation status—discussions must address the broad array of concerns including fears about dying, prognosis understanding, and achieving end-of-life goals. 4