Is End-of-life Care Consistent With Wishes of Patients With Dementia?

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OKLAHOMA CITY – Soon after a dementia diagnosis, many people document their preferences for medical care near the end of their lives, often stipulating that they want to avoid hospitalizations and aggressive interventions. A new University of Oklahoma study aims to discover whether the actual care they receive aligns with their preferences.

Lee Jennings, M.D., a geriatrician and associate professor in the OU College of Medicine, recently received a $2.3 million grant from the National Institutes of Health to analyze the end-of-life experiences of about 550 people with dementia, as well as their caregivers. The findings will advance medical knowledge of how best to care for people with an incurable disease that often robs them of their cognition, causes swallowing disorders, and leads to immobility and falls. An estimated 5 million Americans are affected by Alzheimer’s disease and related dementias, a number that is expected to increase to 10.5 million over the next 25 years.

“Care toward the end of life involves listening to patients, documenting their wishes and coordinating their care around those wishes,” Jennings said. “If a patient doesn’t want CPR or mechanical ventilation, they still desire care. That care may focus on easing their symptoms or helping them gain more independence in daily activities. We may not be able to fix the underlying problem, but we can help them live out their lives with dignity.”

Jennings and her team will analyze patient data from a previous trial called D-CARE, the Dementia Care Study, which compared different care models for people living with dementia. Because several hundred people died during the study, their documented experiences hold a wealth of information about their end-of-life care and how well it aligned with their wishes.

Jennings’ study has three primary aims. In the first, researchers will examine the documentation of a patient’s care preferences – how well were those preferences communicated to caregivers and providers, and were they documented in a patient’s medical record so their wishes were clear if they needed to go to a hospital?

The first aim will also look at specific preferences – for example, whether a patient wanted aggressive treatment to keep them alive or wanted to forego resuscitation attempts so they could die naturally – and then determine if those preferences matched the care that was actually provided.

The second aim will evaluate caregiver feedback regarding the quality of care their loved one received toward the end of life and its relationship to health care utilization, including hospice use, emergency room visits and days spent at home.

In the third aim, researchers will analyze Medicare claims data to determine the cost of health care patients received in the last six months of life and the amount of “burdensome” care, such as inserting a feeding tube against a patient’s wishes when the patient is very near death. In addition, the information gathered for each aim will be stratified by race and ethnicity. Historically, people from minority populations have received poorer quality care, Jennings said, and improvements still need to be made.

“If dementia care programs are doing their job, patients should have their symptoms controlled, their spiritual and emotional needs addressed, and their goals of care should align with the treatment they receive,” Jennings said. “If they desire less aggressive care, can we help them pass away at home on hospice as opposed to going back and forth to the hospital for something that may not extend life nor improve quality of life?”

Findings from the three aims will also be evaluated according to the two dementia care models that were compared in the original D-CARE study. One model was health system-based in which a nurse practitioner with dementia training manages all medical, behavioral and social aspects of a patient’s care and communicates that care to the patient’s primary care provider. The second model was community-based, pairing patients and caregivers with a licensed family counselor or social worker in the community to provide ongoing support for needs.

The results of that research have yet to be published, but the data gathered continues to be useful for studies like the one Jennings is leading. As both a physician and a researcher, Jennings appreciates the opportunity to use her research skills to devise solutions to the problems her patients are facing.

“In health care, we haven’t always done a very good job of taking care of people with dementia in the outpatient setting,” she said. “The previous study tested new models of dementia care, and now we have an opportunity to look deeper at end-of-life care to see what is working well and what needs to be refined.”