Barriers and Facilitators to End of Life Care in Huntington’s Disease – A review of the literature

Background: The advanced stage of Huntington’s Disease has been a secondary focus to support and treatment interventions, resulting in limited knowledge about best practice end of life care for both individuals and their families. This article analyses the current state of knowledge about late stage Huntington’s Disease and end of life planning for people with the disease.

Methods: A literature search was conducted in the electronic databases using the following search terms: ‘Huntington’s Disease’ AND ‘end of life OR palliative care OR late stage OR advanced’. Forty two articles were identified for review.

Discussion: People with Huntington’s Disease think about their end of life wishes, but often do not discuss these with their doctors. Incorporation of an early palliative approach into a multidisciplinary neurology service is widely regarded as best practice and should include the early introduction of end of life planning, however many clinicians are not comfortable with discussing end of life care. This paper synthesises the available information and makes recommendations regarding advance care plans for people with HD.

Conclusion: Initiation of a palliative approach early in Huntington’s Disease has the potential to improve management of symptoms, increase the likelihood of advance care plans being developed and improve the overall quality of life throughout the duration of the illness; therefore, all clinicians working with people with Huntington’s Disease should have an understanding of palliative approaches.