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Published On February 25, 2015

POLICY

Troubled Passage

More Americans are dying with dementia and Alzheimer's. A Proto video series explores how hospitals, doctors and policy makers may be failing them.

In "Long Last Moments," Cathryn Delude details the events of her mother's slow death from Alzheimer's. She describes a health care system that seems calibrated to undermine her mother's wishes for comfort care. Delude ran into physicians who would not honor her mother's medical directives, a cap on hospice benefits that created a gap in her mother’s end-of-life care, and a maze of protocols that even she, as a long-time health writer, could not penetrate.

The first video explores some of the institutional issues that face the increasing number of Americans who face a dementia diagnosis that may ultimately be their cause of death. "What's it going to take for our society to be prepared for that tsunami of dementia which is coming?" asks Diane Meier, director of the Center to Advance Palliative Care.

The second video explores how doctors and hospitals specifically need to find a new model of care for these patients. "As we become more reliant on the technical aspects of care, we're having a harder time supporting the patient and family, and learning about them, and how we can best use the technology of medicine to reach their goals," says Julia Gallagher, medical director of the Home Based Palliative Care program at Massachusetts General Hospital. Changing doctor training protocols and re-imagining home as a center of treatment may help to narrow the gap.

Lastly, the series looks at the fundamental problems of changing public policy around hospice specifically, and the reimbursement of care around those who face the slow decline of dementia. New initiatives, such as one at the Care Dimensions program in Danvers, Mass., aim to find a solution for "gap patients" who are dying but not under the six month window covered by hospice.