期刊
BMC PALLIATIVE CARE
卷 20, 期 1, 页码 -出版社
BMC
DOI: 10.1186/s12904-021-00744-z
关键词
Huntington’ s disease; Late‐ stage; Terminal‐ stage; Neuro‐ palliative care; Advance care planning; Multidisciplinary team; Advanced
Huntington's Disease is an incurable, progressive neuro-degenerative disease with limited access to palliative care services for patients. Through a case study of a late-stage HD patient, it is emphasized that there is a need to improve the accessibility of neuro-palliative care services to help more patients receive comprehensive care.
Background Huntington's Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage HD admitted to our Neuro-Palliative Care service. Case presentation We present the case of a patient with a 16-year history of HD from time of initial genetic testing to admission to our Neuro-Palliative Care service with late-stage disease. Conclusions Given the prolonged, fluctuating and heterogenous HD trajectory, measures need to be implemented to improve earlier access to multi-specialty integrative palliative care services. Given the good outcomes of our case, we strongly advocate for the role of specialised Neuro-Palliative Care services to bridge the gap between clinical need and accessibility.
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