[Which interventions are recommended in the last phase of Huntington disease?]

Area of Science:

• Neurology
• Palliative Care
• Medical Ethics

Background:

• Huntington Disease (HD) is a chronic, progressive neurodegenerative disorder.
• HD significantly impacts patients' physical, cognitive, and psychological well-being over 10-30 years.
• End-of-life challenges include communication loss, feeding difficulties, and respiratory insufficiency.

Purpose of the Study:

• To emphasize the critical need for advance care planning in Huntington Disease.
• To highlight the importance of patient involvement in end-of-life decision-making.
• To address the challenges of life-sustaining measures in advanced HD.

Main Methods:

• This study is a review of current understanding and clinical recommendations for Huntington Disease.
• It synthesizes information on the progression of HD and its impact on patient autonomy.
• Focuses on the ethical and practical considerations of end-of-life care.

Main Results:

• Patients with advanced Huntington Disease often lose the ability to eat independently, requiring feeding tubes.
• Respiratory insufficiency is common, sometimes necessitating tracheostomy.
• Infections, particularly respiratory diseases, are frequent causes of death.

Conclusions:

• Advance care planning is essential for Huntington Disease patients upon diagnosis.
• Engaging patients in decisions about life-sustaining measures while they are capable ensures their autonomy.
• Proactive planning facilitates dignified end-of-life care aligned with patient wishes.