Huntington’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.Background
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.Aim
The 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.Method
A 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.Results
The 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.Conclusion
An 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.