H16 Advance care planning in huntington’s disease from the perspective of the multidisciplinary team


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Abstract

BackgroundHuntington’s disease (HD) is a chronic, progressive, neurodegenerative condition with a complex and ultimately fatal trajectory. As there is no cure for the disease, palliative care needs should ideally be considered from the time of diagnosis.In the United Kingdom, the End of Life Strategy recommends the use of Advance Care Planning (ACP) as a mechanism for discussion about wishes and preferences between an individual and their care providers in order to prepare for end of life situations.AimThe purpose of this study was to describe the views and experiences of the members of the multi-disciplinary team (MDT) on advance care planning for individuals with HD.MethodA descriptive phenomenological approach was used to elicit, explore and critically analyse the aspects of the MDT’s knowledge and experiences on ACP. The Colaizzi method of analysis was used on the data collected from two focus groups.ResultsThe findings strongly suggest that ACP can be a useful tool to plan future care and facilitate discussions between patients, families, carers and the MDT. Planning should be approached sensitively, initiated in a timely manner and integrated into the patients’ clinical management. An ACP booklet for HD has been developed as a resource and a tool for documenting ongoing discussions.ConclusionAn integrated approach on ACP does not end with the documentation of the patient’s wishes but rather it is a continuing process of discussions with the patient and all involved in his/her care.

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