Late stage care in Huntington's disease

Huntington's disease (HD) is a relentlessly progressive neurodegenerative disease, which is presently incurable. Despite the hope for future therapies that exists for the families, they meantime are aware that there is little that their clinicians can do to delay either onset or progression of the disease. There are unique issues to address in a disorder where patients are aware in advance that their ability to communicate, as well as their cognitive capacity, will become impaired. Most affected individuals have experience of the disease in its late stages because of their parent's and other family member's illness. Many have their own ideas and anxieties about how their own care ought to proceed. There are no published guidelines for management of this stage of disease, although all clinicians involved in the care of HD will have their own experiences to share. This paper describes one method for such management, which includes discussion about placement for care advance directives for feeding and treatment.