Exploring Place of Death among Individuals with Huntington's Disease in the United States.
Amy C Ogilvie, Connie S Cole, Benzi M Kluger and 1 others
PMID 39401748WHAT IT FOUND
US deaths with Huntington disease most often occurred in long-term care facilities, but from 2009 to 2019 home and hospice deaths rose.
Nurses should expect complex end-of-life needs in long-term care, especially rural areas.
Key findings
01Long-term care facilities were the most common place of death for individuals with Huntington disease in the US, accounting for 48.4% of deaths, followed by home at 23.0% and hospital at 17.7%.
02From 2009 to 2019, deaths in long-term care facilities fell from 53.5% to 43.9%, and hospital deaths fell from 19.9% to 17.5%, while home deaths rose from 18.6% to 25.4% and hospice facility deaths rose from 2.7% to 8.0%.
03Rural residence was associated with a greater proportion of deaths in long-term care facilities, and a greater number of listed contributing causes was associated with greater odds of dying in hospital or long-term care facilities.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPsWhat it means for RNs
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What it does not show
Place of death came from death certificates, which can have errors in demographics and causes of death. The data lacked disease-specific function, comorbidities, and healthcare service use, so it cannot show why a family chose a location or how well symptoms were controlled. Hospice facility deaths counted only deaths in hospice facilities, not hospice care received at home, so hospice use overall may be underestimated. The analysis could not adjust for local availability of long-term care or hospice services, so rural patterns may reflect service scarcity rather than preference. Some logistic models excluded people with missing marital status, education, or ethnicity, and suicide cases were excluded from some comparisons, so results do not cover every death. Medical Aid in Dying and other manners of death were not captured. Race and ethnicity groups other than White and non-Hispanic were small, so differences for minority groups are limited.
Declared interests
The supplied text does not include an author conflict-of-interest statement; publication types list non-U.S. government and NIH extramural research support.
The easy way to misread this
Do not read the rise from 2.7% to 8.0% as evidence that all hospice care increased; it counted only deaths in hospice facilities and did not include hospice care at home.