What is it about?
This commentary highlights the importance of advance care planning (ACP) for a patient with Huntington's disease (HD), their family, and the multidisciplinary team involved in the provision of care. We also outline the infrastructure and model of the dedicated ACP clinic integrated within our HD service.
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Why is it important?
Early consideration of ACP discussions is important given the potential challenges in ascertaining decision-making capacity in the advanced stages of the HD. 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.
Perspectives
Integrating ACP discussions within the provision of care of patients with HD is essential. By outlining the model and structure of the dedicated ACP clinic integrated within our HD service, we emphasise the importance of a patient-centred approach that fulfils the patient’s expressed goals, preferences, and values.
Dr Mena Farag
University College London
Read the Original
This page is a summary of: Advance Care Planning in Huntington’s Disease, Journal of Huntington s Disease, May 2023, IOS Press,
DOI: 10.3233/jhd-220559.
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