Understanding Huntington's Disease and End-of-Life Choices

Nagui Morcos was diagnosed with Huntington’s disease in 1995, a genetic neurodegenerative disorder that affects movement, cognition, and mental health. Having witnessed his father’s suffering from the same condition, Morcos made the difficult decision to pursue medical aid in dying rather than endure the disease’s advanced stages.

The Emotional Toll on Caregivers: Jan Crowley’s Story

Morcos’s partner, Jan Crowley, supported his right-to-die decision but struggled emotionally. In interviews for CBC Radio’s White Coat, Black Art with Dr. Brian Goldman (featured in Nagui’s Choice), Crowley shared her initial anxiety and grief.

How Crowley Found Peace

Therapy – Professional counseling helped process her emotions.
Work Leave – Taking time off provided space for healing.
Mindfulness Meditation – Crowley credits this practice with helping her stay present.
- "Mindfulness meditation helped me more than I can say," she reflected.

The Aftermath: Morcos’s Final Decision

Morcos ended his life on April 22, 2012, six weeks after the final podcast aired. His story highlights the complexities of Huntington’s disease caregiving and end-of-life choices.

Resources for Further Learning

Listen to Nagui’s Choice on CBC Radio (click here).
Read "Shoot Me, Please": The Right to Die by Stan Goldberg for more on right-to-die advocacy.

Key Takeaways

Huntington’s disease presents unique challenges for patients and families.
Medical aid in dying decisions impact loved ones deeply.
Mindfulness and therapy can help caregivers cope with anticipatory grief.

Articles tagged "end-of-life-decisions"

Articles tagged "end-of-life-decisions"

Nagui Morcos: A Huntington's Disease Right-to-Die Story