Advisory panel: Advanced dementia patients need better access to end-of-life care




Patients with advanced dementia should have increased access to comprehensive care wherever they live, including the facilities in which they spend the last months of their lives, a federal health care advisory panel has recommended.

Advanced care planning, palliative care, and increased access to hospice admission all would improve the quality of life for both patients and families, Dr. Laurel Coleman said at a meeting of the Advisory Council on Alzheimer’s Research, Care, and Services. Despite their proven benefits, however, these strategies aren’t universally available.

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“Palliative care and hospice admission, for example, are both tools that make it much less likely that people with advanced dementia will die in a hospital, “ said Dr. Coleman, chair of the council’s clinical research and care subcommittee, which made the recommendations. “They have lower levels of pain and distress, and are less likely to have feeding tubes and restraints and other invasive measures implemented during the final stages of life.”

Hospice accessibility “is what keeps us up at night,” she said. Prognostication of life expectancy is difficult in advanced dementia, and hospice units typically only admit patients expected to live less than 6 months.

Other problems that impede appropriate hospice admission for these patients include incorrect coding – frailty instead of advanced dementia, for example – and the unintended consequences of new policies designed to restrict fraud and long-term hospital stays, said Dr. Coleman, a geriatrician at Maine Medical Center in Portland and a member of the palliative care team at Central Maine Medical Center in Lewiston. “Some of these things just make it unnecessarily hard for these patents to enter hospice.”

Because advanced dementia care is so fragmented, the majority of patients in the United States don’t get optimal care. “It’s really a case of luck – being at the right place in the right time. And if you’re not, you’re out of luck,” she noted.

Ideally, the federal government would support programs that care for dementia patients across the spectrum of their illness, said Dr. Coleman and her cochair, Dr. Susan Mitchell. They held up the Beatitudes Campus of Glendale, Ariz., as a prime example of what could be done to accommodate dementia patients and their families in a holistic setting that supports everyone throughout the course of the disease. The early memory program focuses on cognitively stimulating activities and full medical support that increases as needed. There is an emphasis on preempting disruptive behavior rather than responding to it after it develops. The advanced dementia care unit steps up all these goals as disease progresses.

Another unique aspect of the facility is its research arm and a full professional education program, said Dr. Mitchell, a geriatrician and director of palliative care research at the Institute for Aging Research, Boston. This focuses on building clinicians’ expertise in caring for dementia patients, preparing them to take on leadership roles in the field.

However, she said, “this is a highly aspirational goal. Implementing units like these [with federal support] will be like parting the Red Sea: Important, but extremely difficult.”

Despite the perhaps pie-in-the-sky goal, the subcommittee recommended that the Department of Health & Human Services pursue the idea of creating pilot “dementia-friendly communities” that would serve patients from diagnosis to death. “HHS should support a piloting process of 10-15 communities” that would be funded by a request for proposals from communities interested in participating. Ideally, these facilities would reflect diversity in culture and be split between rural and urban locales.

“Should the evaluation of the pilot programs justify replication, then the goal would be widespread adoption of dementia-friendly communities by 2020,” the committee noted.

As members of a federal working group, Dr. Coleman and Dr. Mitchell had no financial disclosures.

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