When Huntington’s patients were admitted to hospice, most either had been living at home or in a long-term care facility. Upon admission, most of the patients were confined to bed or could only walk with assistance.
They typically stayed longer in hospice than other patients, with a median stay of 42 days compared with 17 days for other patients.
While patients with other diagnoses were most likely to die at home, 40% of Huntington’s hospice patients died in long-term care facilities, and 37% died in an inpatient hospice or hospital. Only 23% died at home.
Huntington’s patients most often reported pain as their main symptom upon hospice admission, followed by anxiety, nausea, and breathing difficulties. Researchers said they did not include typical Huntington’s symptoms such as movement abnormalities and mood swings in the analysis.
They argued that many of the findings — including earlier admission ages and longer stays — reflect the disease’s burdensome and complicated nature. The burden on family caregivers is extensive, particularly when managing psychiatric and behavioral abnormalities.
Earlier studies suggest that chorea contributes less to disability in Huntington’s patients than emotional issues such as stress, anxiety, and depression.
Their data suggest that caregivers and patients should continue to consider hospice care until researchers come up with better solutions for managing and treating Huntington’s patients’ unique symptoms and psychosocial needs.
“Until we can delay the progression of this fatal disease, all treatment remains palliative, and patients would benefit from greater involvement of hospice in end-of-life care,” researchers stated.