Affiliations: [a] Huntington’s Disease Centre, UCL Queen Square Institute of Neurology, University College London, London, UK
| [b] The National Hospital for Neurology and Neurosurgery (NHNN), London, UK
Correspondence:
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Correspondence to: Dr. Mena Farag, Huntington’s Disease Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, Russell Square House, 10-12 Russell Square, London, WC1B 5EH, UK. E-mail: [email protected]; ORCID: 0000-0002-0679-0117
Abstract: Advance care planning (ACP) is a useful tool that benefits adult patients, care providers, and surrogate decision makers, through providing opportunities for patients to consider, express, and formalize their beliefs, preferences, and wishes pertaining to decisions regarding future medical care at a time when they retain decision-making capacity. Early and timely consideration of ACP discussions is paramount in Huntington’s disease (HD) given the potential challenges in ascertaining decision-making capacity in the advanced stages of the disease. ACP helps to empower and extend patient autonomy, providing clinicians and surrogate decision makers with reassurance that management is consistent with a patient’s expressed wishes. Regular follow up is vital to establish consistency of decisions and wishes. We outline the framework of the dedicated ACP clinic integrated within our HD service to highlight the importance of a patient-centred and tailored care plan that fulfils the patient’s expressed goals, preferences, and values.
Keywords: Advance care planning, Huntington’s disease
