Patient perspectives on advance euthanasia directives in Huntington's disease. A qualitative interview study

Area of Science:

• Neurology
• Palliative Care
• Bioethics

Background:

• Huntington's disease (HD) is a progressive neurodegenerative disorder with a poor prognosis.
• Advance euthanasia directives (AEDs) are utilized by some Dutch HD patients to address end-of-life concerns.
• Limited understanding exists regarding HD patients' perspectives on their AEDs.

Purpose of the Study:

• To explore Huntington's disease patients' views and attitudes towards their advance euthanasia directives.
• To investigate changes in patients' perspectives on AEDs over time.

Main Methods:

• A longitudinal qualitative interview study was conducted over a maximum of three years.
• Semi-structured interviews (1-6 per participant) were performed with nine Huntington's disease patients.
• Participants included patients from outpatient clinics, day care, and assisted living facilities.

Main Results:

• Two primary themes emerged: the general nature of AEDs and uncertainty surrounding them.
• Patients typically included general conditions for euthanasia, not person-specific criteria, and familial experience with HD influenced AED creation.
• Participants acknowledged the tentative nature of AEDs and experienced doubts, yet no alterations to directives or attitudes were observed during the study period.

Conclusions:

• Huntington's disease patients often establish AEDs with broad euthanasia conditions, recognizing potential future shifts.
• The process of creating or considering an AED can facilitate crucial discussions about future care goals and preferences.
• AEDs can serve as a catalyst for dialogue regarding end-of-life care planning in the context of Huntington's disease.