What are the considerations and guidelines for assisted dying in patients with terminal illnesses, such as cancer or neurodegenerative disorders, and severe disabilities?

Assisted Dying: Clinical Approach and Considerations

Primary Response to Requests for Hastened Death

When a patient requests assisted dying, the most appropriate initial response is to intensify palliative care interventions and explore unmet needs through open dialogue, as this approach often identifies new opportunities for symptom relief and addresses the underlying causes of suffering. 1

Systematic Approach to Assisted Dying Requests

Initial Assessment and Exploration

When patients express interest in hastened death, clinicians should:

• Conduct open exploration of the request to identify specific unmet physical, psychological, social, or spiritual needs that may be driving the desire for death 1
• Assess for reversible causes of suffering including inadequately controlled pain, dyspnea, depression, anxiety, delirium, or existential distress 1
• Request psychiatric consultation to diagnose and treat reversible causes of psychological suffering, particularly depression which affects one-third of patients considering assisted dying 1, 2
• Evaluate the patient's understanding of their prognosis and available palliative interventions, as misunderstanding often affects preferences for life-extending measures 1

Alternative Interventions to Consider First

Before proceeding with assisted dying discussions, the following alternatives should be offered and discussed:

• Treatment withdrawal of life-sustaining interventions including mechanical ventilation, artificial nutrition/hydration, or other aggressive therapies 1
• Voluntary cessation of eating and drinking as a patient-controlled option for hastening death 1
• Palliative sedation for refractory symptoms in patients with life expectancy of hours to days, using agents such as midazolam (preferred due to short half-life and rapid onset), pentobarbital, thiopental, or phenobarbital 1, 3
• Intensified symptom management including opioids for pain and dyspnea, with doses titrated to comfort rather than arbitrary limits 4

Legal and Ethical Framework

The legal status and procedural requirements vary significantly by jurisdiction:

• In jurisdictions where legal (Oregon, Washington, Netherlands, Belgium, Canada, Spain, Australia, New Zealand as of the evidence timeframe), specific protocols exist requiring multiple physician assessments, waiting periods, and documentation of decisional capacity 1
• Euthanasia remains illegal in most of the United States and many other jurisdictions, making it critical to understand local laws before any discussions 1
• Organ donation after medical assistance in dying (ODEH) has emerged as an option in some jurisdictions, requiring coordination between MAiD providers and transplant teams with specific protocols for death determination 1

Key Motivations Driving Assisted Dying Requests

Research consistently identifies these factors across international contexts:

• Desire for autonomy and control over the dying process (68% of patients) 5, 2
• Current unbearable suffering including physical, psychosocial, and existential components (57% of patients) 5, 2
• Fear of future suffering rather than present symptoms (51% of patients) 5, 2
• Social concerns including not wanting to burden family or caregivers (22% of patients) 5, 2
• Loss of dignity, independence, and ability to engage in meaningful activities 6, 5

Communication and Consent Process

For Patients with Decisional Capacity

The discussion should include:

• Acknowledgment that prior treatments have not been successful in controlling symptoms or addressing concerns 1, 3
• Current prognosis with realistic predictions about survival and disease trajectory 1
• Rationale, aims, and methods for all available interventions including palliative sedation, with discussion of depth of sedation, monitoring plans, and possibility of planned weaning 1
• Alternative treatment options with likelihood of symptom relief and expected survival for each approach 1
• Reassurance of continuing care regardless of the patient's decision, emphasizing the team's commitment to providing comfort 1

For Patients Without Decisional Capacity

• In the absence of advance directives or health-care proxy, provision of comfort measures including palliative sedation should be considered standard practice and the default strategy for treatment decisions 1, 3
• For terminally ill patients in severe distress where consent cannot be obtained, comfort-focused care takes priority over obtaining formal consent 1, 3

Family Involvement

• Permission should be sought to include family members in discussions, as this is usual practice and facilitates meaningful conversations 1
• Conduct discussions both with and without the patient present to address family concerns separately while maintaining patient autonomy 1
• Prepare families for the dying process including education about what to expect, anticipatory grief counseling, and arrangements to honor patient and family wishes 1

Critical Pitfalls to Avoid

Clinical Errors

• Do not dismiss requests without thorough exploration, as this represents a missed opportunity to address unmet needs and improve quality of life 1
• Avoid undertreatment of symptoms due to unfounded fears about respiratory depression from opioids, as evidence supports their safety when appropriately dosed for dyspnea and pain 4
• Do not reduce opioid doses solely for decreased blood pressure, respiration rate, or level of consciousness when necessary for adequate symptom management at end of life 4
• Avoid pursuing aggressive interventions that compromise comfort or quality of remaining life in dying patients 1, 3

Communication Failures

• Do not withhold information about prognosis or options based on assumptions about what patients want to know, as this impacts relationships and autonomous decision-making 2
• Avoid describing palliative care as "just hospice" in ways that demean the value of end-of-life care 1
• Do not make unilateral decisions about sedation or other interventions without involving patients and families in shared decision-making 1, 7

Autonomy Concerns

• Recognize that autonomy at end of life extends beyond treatment decisions to include maintaining engagement in daily activities, contributing to others, and active preparation for dying 6
• Avoid assuming terminal illness automatically impairs decisional capacity, as empirical evidence does not support blanket judgments about competence in dying patients 8
• Do not allow social pressure concerns to override patient autonomy without concrete evidence of coercion in individual cases 8

Advance Care Planning Integration

Timing-Based Interventions

For patients with years to months to live:

• Initiate open discussions about palliative care options including hospice 1
• Elicit personal values and preferences for end-of-life care 1
• Explore congruence between patient wishes and family/healthcare team expectations 1
• Provide information about advance directives including living wills, power of attorney, and specific limitations on life-sustaining treatments 1

For patients with months to weeks to live:

• Actively facilitate completion of advance directives and ensure availability across all care settings 1
• Determine where the patient wants to die, as most cancer patients prefer home death 1
• Discuss organ donation and autopsy preferences 1
• Consider discontinuation of anticancer therapy and offer best supportive care with hospice referral 1

For patients with weeks to days to live:

• Ensure compliance with advance directives regardless of treatment setting 1
• Clarify decisions regarding cardiopulmonary resuscitation 1
• Engage ethics, social work, or chaplain consultation for conflict resolution when patient, family, and medical team disagree 1
• Discontinue diagnostic tests and unnecessary medications/tubes 1, 3

Palliative Sedation as Alternative

When refractory symptoms persist despite optimal palliative interventions:

• Palliative sedation is ethically justified under the Doctrine of Double Effect and represents an alternative to assisted dying 1
• Best performed by palliative care experts using parenteral infusions of midazolam (preferred), pentobarbital, or thiopental 1, 3
• Doses should be titrated to achieve comfort, not complete symptom suppression, with continuous reassessment 3
• Most protocols include planned periods of medication withdrawal to allow reevaluation and direct patient assessment 1
• Temporary reduction of sedation may enable terminal lucidity for meaningful patient-family interactions when previously desired by the patient 7

Impact on Quality Palliative Care

Recent evidence suggests complex bidirectional effects:

• VAD availability can enhance whole person care when open communication promotes adherence to therapeutic options and timely palliative care access 2
• VAD pursuit may impede care relationships when patients withhold information or seek VAD as a solution over palliative interventions 2
• Ongoing support is necessary for caregivers and healthcare staff who accompany patients pursuing assisted dying 2