New Penn Research Center Focused on Palliative Care for Dementia Patients

The University of Pennsylvania (Penn) is establishing a new research center designed to improve palliative care for dementia patients who dwell in nursing homes or assisted living facilities. 

The new center, called the Transformative Residential Palliative Care for Persons with Dementia Center Through Behavioral Economics and Data Science, will be financed through a $2.5 million National Institute on Aging (NIA) grant to Penn’s Palliative and Advanced Illness Research (PAIR) Center.

“The purpose of the center is to transform and substantially improve the efficiency of palliative care delivery for persons with dementia and their caregivers in residential settings, by which I mean primarily nursing homes and assisted living,” said Scott Halpern, director of PAIR and a senior fellow at the Leonard Davis Institute of Health Economics at Penn, who will lead the new center. “The ways in which we will seek to achieve that goal will include a series of studies in partnership with Genesis Healthcare. We will be providing core research infrastructure and financial resources to support studies that leverage methods from data science and behavioral economics to greatly improve upon the efficiency of palliative care delivery.”

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Genesis HealthCare provides short-term post-acute, rehabilitation and long-term care services in more than 500 skilled nursing centers and assisted/senior living residences in 34 states.

The new center at Penn will be one of 13 NIA-funded Roybal Centers, which study interventions to improve the lives of older people as well as the capacity of institutions to adapt to societal aging. Penn, which also operates the Roybal Center on Behavioral Economics and Health, is the first institution to hose two such centers.

“By efficiency, I mean the value of [palliative care] services provided relative to their costs, and value defined by benefits that the services bring to patients and their family caregivers,” Halpern told Hospice News. “Cost is a really relevant issue in this space, and probably should be broadened it to resource requirements more generally, because staffing resources as well as the financial resources required to deliver effective palliative care are non-trivial barriers to improving palliative care delivery in nursing homes.”

The centers inaugural projects will address aspects of advance care planning. The first is devoted to improving communication between physicians and patients and families about end-of-life wishes and goals, while the second involves testing an online care planning tool customized for patients with dementia who receive long term care.

“The fact is that people have not spent a lot of time thinking about advanced care planning and dementia because it’s often been assumed that advanced directives, as classically construed, are legal documents that can’t be signed by a surrogate. To our way of thinking that’s a very myopic frame of reference,” Halpern said. “Advance care plans more broadly should be construed as clinical documents that reflect expressions of wishes that can be made by persons with mild or even moderate cognitive impairment — and can be made for persons with severe cognitive impairment by their family caregivers — and instantiated into electronic health records so as to prospectively improve upon the odds that subsequent care delivery matches patients’ and families’ goals.”

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