Primary Palliative Care in Huntington's Disease

Area of Science:

• Neurology
• Palliative Medicine
• Healthcare Management

Background:

• Palliative care, including goals of care communication and advance care planning (ACP), can improve care for Huntington's disease (HD) patients.
• A pilot program was developed to integrate primary palliative care with interdisciplinary HD care.

Purpose of the Study:

• Train HD team members to facilitate goals of care and ACP conversations across all HD stages.
• Develop patient-centered care planning materials focusing on quality of life.
• Adapt clinic workflow for integrating goals of care and ACP discussions.

Main Methods:

• Defined planning domains beyond end-of-life issues.
• Created a patient and family guide for HD advance care planning.
• Conducted VitalTalk communication training and modified clinic workflow, including EMR template development.

Main Results:

• Post-training, team members' confidence in discussing serious news increased from 12.5% to 50%.
• Confidence in managing difficult conversations rose from 25% to 62.5%.
• Advance care planning discussions occurred in 30.6% of clinic visits, up from 12.5%.

Conclusions:

• Delivering primary palliative care within an interdisciplinary HD clinic is feasible.
• Integrating palliative care into HD specialty care necessitates further training and operational adjustments.