Primary Palliative Care in Huntington's Disease.

ABSTRACT:

Background

Palliative care practices, including communication about patient-centered goals of care and advance care planning (ACP), have the potential to enhance care throughout the course of Huntington's disease (HD) and related disorders. The goal of our project was to develop a pilot program that integrates primary palliative care practices with interdisciplinary care for HD.

Objectives

(1) To train HD team members to facilitate goals of care and ACP conversations at all stages of HD; (2) To create materials for care planning in HD focused on patient-centered goals of care and health-related quality of life; and (3) To modify clinic workflow to include goals of care and ACP discussions.

Methods

We defined planning domains to expand care planning beyond end-of-life

SUBMITTER: Harrison MB 

PROVIDER: S-EPMC9847290 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature