Objective: This study examines the ethical and legal criteria for determining a patient’s authentic will in late-stage Parkinson’s disease when refusal of life-sustaining measures occurs under conditions of cognitive impairment, psychiatric comorbidity, or fluctuating decisional capacity.

Background: Late-stage Parkinson’s disease is frequently characterized not only by progressive motor decline but also by cognitive deterioration, affective and psychotic symptoms, dementia, and multiple somatic comorbidities. As functional capacity diminishes, some patients appear to withdraw from life-sustaining interventions such as nutrition, hydration, or medication. This raises the question whether such conduct reflects an authentic, self-determined wish or the manifestation of neuropsychiatric pathology. Interpretive challenges are particularly acute in individuals with longstanding psychiatric disorders or fluctuating capacity who can no longer communicate consistently. Clinicians must navigate a tension between the duty to preserve life and the obligations to relieve suffering and respect autonomy.

Method: A comparative normative analysis was conducted of statutory frameworks in different countries, examining how the determination of patient will is conceptualized and operationalized.

Results: Determining authentic will in advanced Parkinson’s disease, particularly near the end of life, is often uncertain. Advance directives may reflect prior value commitments but are frequently drafted long before and may not anticipate advanced disease. Substitute decision-making through powers of attorney can likewise produce conflict regarding interpretation of preferences and best interests. Across jurisdictions, several recurring principles emerged that will be laid out and explained.

Conclusion: Uncertainty regarding a patient’s will to live in advanced Parkinson’s disease reflects the intersection of neurological decline, psychiatric vulnerability, and normative complexity. Although jurisdictions differ doctrinally, they converge on the need for individualized, procedurally robust evaluation of patient preferences. Clarifying these mechanisms strengthens ethically defensible and legally sound clinical practice while preserving the balance between life protection and respect for self-determination.

« Back to 2026 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/to-protect-life-and-safeguard-autonomy-ambiguous-expressions-of-the-will-to-live/