End-of-Life Hospice Care Underused

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Doolin did not choose to enter hospice care. She understood that the service was covered by Medicare, but she also knew that coverage had its limits. As a prerequisite to enter hospice care, Doolin, who was unable to eat on her own, would have been forced to give up intravenous feeding, an expensive service for which she would not be reimbursed. "If she had gone on hospice care and not received [feeding], she would've died within a couple of days," said Wright, a fellow in hematology/oncology at Dana-Farber.

So, Doolin opted to stick with hospital-based chemotherapy and intravenous feeding instead. "Because she got this nutritional support, she lived for more than a month and got to see her daughter get married," said Wright.

Doolin's condition did deteriorate soon after, however. She and her family found themselves scrambling for some kind of dignified, palliative care in the woman's last days. "There shouldn't have been a single barrier to her receiving hospice care the night that she needed it," Wright said. Family and friends in the community worked together to help get Doolin the care she needed, "but her dying experience was a near-disaster," Wright said.

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That's because gaps still exist when it comes to items that Medicare, as well as much private insurance, will reimburse for hospice patients. Intravenous nutrition is one such item, as are chemotherapy drugs that might extend -- but not save -- a cancer patient's life. Entering hospice care, "patients often have to give up medicines that are helping to support them, make them feel better, helping them live longer," Wright said.

She believes in an "open access" system where these needs are taken into account. Building such a system might mean the creation of larger hospice organizations, however, so that the cost of expensive therapies could be spread over a larger patient population, Wright said.

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