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Hospice care for those with dementia falls far short of meeting people’s needs at the end of life

Maria J Silveira, University of Michigan, The Conversation on

Published in Senior Living

Jimmy Carter, who chose to forgo aggressive medical care for complications of cancer and frailty in February 2023, recently reached his one-year anniversary since enrolling in hospice care. During this time, he celebrated his 99th birthday, received tributes far and wide and stood by the side of his beloved wife, Rosalynn, who died in November 2023.

In contrast to the former president, his wife, who had dementia, lived only nine days under hospice care.

Palliative care physicians like myself who treat both conditions are not surprised at all by this disparity.

Hospice brings a multidisciplinary team of providers to wherever a patient lives, be it their own home or a nursing home, to maintain their physical and psychological comfort so that they can avoid the hospital as they approach the end of life.

Hospice is not the same as palliative care, which is a multidisciplinary team that sees seriously ill patients in a clinic or hospital to help them and their families with symptoms, distress and advance care planning.

Strikingly, only 12% of Americans with dementia ever enroll in hospice. Among those who do, one-third are near death. This is in stark contrast to the cancer population: Patients over 60 with cancer enroll in hospice 70% of the time.

 

In my experience caring for dementia patients, the underuse of hospice by dementia patients has more to do with how hospice is structured and paid for in the U.S. than it does patient preference or differences between cancer and dementia.

In the U.S., most hospice stays are paid for by Medicare, which dictates what hospices look like, who qualifies for hospice and what services hospices provide. Medicare’s rules and regulations make it hard for dementia patients to qualify for hospice when they and their families need support the most – long before death.

In Canada, where hospice is structured entirely differently, 39% of dementia patients receive hospice care in the last year of life.

The first hospice opened in the U.S. in 1974.

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