H08 Advance care planning and palliative care in huntington’s patients

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Abstract

Background

Huntington disease is a neurodegenerative disease, that is very specific in terms of care. Therefore, proper Advance Care Planning (ACP), including palliative care, might be considered to be very important to patients and their loved ones, especially in times of illness progression and at the final stages of life.

Aims

Advance Care Planning and palliative care is a tool that is used by our care staff, in order to provide individual care that concentrates on future wishes of patients, regarding care in nursing homes. ACP is done together with the patient and close family members. First proper assessment of patient´s need is done and formed into a care plan, that is followed by the care staff. Parts of palliative care are discussed later, after the patient is settled and feels at home. It is analysed together with the patient and as part of other regular needs, especially when certain signs of disease progression are shown. Than we implement them into the care plan of the patient. This process is repeated in regular periods of time in order to be sure, that patient’s wishes have not changed.

Methods

We try to use all information about the patient such as likes and dislikes, mainly from personal discussion. Because of the specific nature of the disease, talking might be limited. In that case we concentrate on talking to the familiy and close friends.We use all information about the patient´s life and create a customised care plan. There are also methods used by social workers, such as observation or empathizing. Essential part of Advance Care Planning and palliative care is a multidisciplinary team, that is formed by nurses, clergy, care workers and social workers. Palliative care as part of ACP might consist of spiritual wishes, care preferences regarding for example eating or end-of-life wishes and arrangements.

Results/outcome

All our patients have a customised care plan. This is part of compulsory legislation rule. Improving the structure of the care plan in terms of specifying needs and taking interest in palliative care, we can provide better care for our patients. It gives us all the necessary information to provide care based on individual needs and be ready to react in times of disease progression. By using ACP and palliative methods of care we have received several rewarding recognitions.

Conclusion

By implementing the methods of Advance Care Planning and palliative care we can provide a certain level of contentment to our patients and their loved ones. At the end, that is all that matters.

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