Article Text
Abstract
Background Hospice Isle of Man’s aim is to provide access to those who could benefit regardless of diagnosis. The hospice began offering services to non-cancer patients in 2016. Little is known about how many could benefit or the extent of the hospice’s involvement by disease category. The Isle of Man is not included in Hospice UK’s PopNAT.
Aims To estimate the number of persons who could have potentially benefited from palliative and end-of-life care. To understand differences in hospice involvement by disease category.
Methods The Isle of Man Registry maintains weekly Excel sheets with death certificate data. We extracted variables of interest for the period between 1 January 2013 to 31 December 2018. We created a variable for palliative need based on cause of death where there was any mention of cancer, Alzheimer’s/dementia, organ failure or a neurodegenerative condition. Using hospice records, we identified persons who received hospice care for the years 2016–2018. We estimated unmet need by comparing hospice involvement and presence of a condition likely to benefit from palliative care and compared hospice involvement by palliative disease category.
Results There were 5,005 deaths between 2013 and 2018, representing 1% of the population per year. Prior to 2016, the hospice cared for 30% of persons who died. By 2018, 39% had hospice care representing a 21% increase from 2016. Of all deaths between 2013 and 2018, 30% had a palliative condition and hospice care. An additional 34% had a palliative condition but no hospice care. The hospice was involved in 88% of all cancer cases but only in a quarter or less of cases with organ failure (28%), neurodegenerative conditions (26%), or Alzheimer’s/dementia (16%).
Conclusions Since 2016, more persons received hospice care. However, persons with non-cancer conditions who could benefit remained under-represented compared to those with cancer. Future studies are needed to understand the factors contributing to this difference.