Background Huntington’s disease (HD) is an inherited neurodegenerative disease, characterized by movement disorders, psychiatric symptoms, and cognitive decline. In the later stages of the disease patients often are no longer able to express their wishes for care, because of problems with communication and cognitive decline. Little is known about advance care planning, advance directives, and end of life care for HD patients.
Aims: In this study we aim to explore HD patients’ perceptions of their future, end of life, and end of life care, and whether these perceptions change over time. Furthermore, we aim to study the views of elderly care physicians on advance care planning and end of life care for HD patients.
Methods A qualitative approach is adopted using semi-structured interviews. Approximately 10–15 HD patients will be interviewed every 6 months for a period of 2 to 2.5 years. Topics are: quality of life, the future, end of life, death, advance directives and talking to others about these subjects. In addition, approximately 10 elderly care physicians will be interviewed once. The physicians will be encouraged to describe their experiences with advance care planning, end of life care, patients’ decision making capacity, advance directives, and euthanasia in HD. All interviews will be audio recorded and transcribed verbatim. Atlas.ti will be used for analysis.
Results and conclusions Data collection started in 2017 and results are expected in 2020. The results of this study will provide valuable information on advance care planning and end of life care for HD patients.
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