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Nursing Home Residents with Advanced Dementia Benefit When “Goals of Care” Are Established



THE GOALS OF CARE intervention resulted in more attention to palliative care in treatment plans and physician directives physician directives about when to avoid cardiopulmonary resuscitation and other lifesaving measures in medical emergencies.

A program that included a short video and structured discussion between family members and the nursing home team on care decisions for loved ones with advanced dementia resulted in fewer hospital transfers and admissions.

The use of a fairly simple intervention to encourage family members to identify “goals of care” (GOC) for a loved one in a nursing home because of advanced dementia can help get decision-makers and caregivers on the same page about end-of-life plans and lead to better palliative care for the patient.

The intervention, which involved family members watching a short video and having a structured discussion with nursing home staff to establish a care plan, seemed to improve communication between family members and staff, and resulted in fewer hospital transfers, according to a November 28, 2016 online report in JAMA Internal Medicine.

The study by a research team based at the University of North Carolina (UNC) has important implications because about 67 percent of persons with dementia spend their final days in a nursing home. Families often wrestle with decisions around what's best for the patient, and transfers to a hospital are common if an acute illness arises.

“Acting as a surrogate decision-maker for a family member with dementia is one of the most difficult aspects of being a caregiver,” noted an editorial that accompanied the study.

Lead study author Laura Hanson, MD, MPH, professor of geriatric medicine and director of palliative care at UNC, told Neurology Today the focus of decision-making should be on “choosing the right path to achieve the best care for the person with advanced dementia. It is not that you're choosing not to treat; rather you're choosing different paths of treatment depending on your goals and priorities.”

Family members often have to make tough choices on behalf of a person with dementia, including decisions about placing feeding tubes, treatment of infections, and hospital transfers, the study noted. While those decisions may feel overwhelming, research has found that families tend to have only limited communication with staff and feel a lack of support for their choices.


The new study was conducted at 22 nursing homes within 60 miles of UNC-Chapel Hill and involved 302 residents with advanced dementia and their family members. Half of the nursing homes were assigned to the intervention arm, and the other half served as controls. The nursing home residents were on average 85.5 years old, and 12.9 percent of them were African-American and 81.5 percent were women.

The intervention consisted of having family members watch an 18-minute “goals of care” decision aid video, followed by a structured discussion with the nursing home care team. The video, which was developed by the UNC team, included information on dementia; goals of prolonging life, supporting function or improving comfort; treatments consistent with each goal; and how to prioritize goals.

To prepare the staff for goals-of-care discussions with families, investigators provided a one-hour training session to nurses, social workers, therapists, and nutritionists who create care plans.

The researchers compared outcomes at three months, six months, and at the final endpoint of nine months, or death. The primary outcomes were three family-rated measures of quality of communications and decision-making: Quality of Communications scores for nursing home staff, concordance with clinicians on goals of care, and the Advance Care Planning Problem score.

Secondary outcomes focused on the quality of palliative care at six months, nine months, or death. Families rated quality of symptom management and overall care using scales measuring care and symptom management for dementia.


DR. LAURA C. HANSON said the focus of decision-making should be on “choosing the right path to achieve the best care for the person with advanced dementia. It is not that youre choosing not to treat; rather youre choosing different paths of treatment depending on your goals and priorities.”

“Over time, family decision-makers in both arms increasingly chose comfort as the primary goal of care,” the researchers wrote, “but those with the GOC intervention experienced better communication and enhanced confidence that health-care providers were prioritizing the same goal.”

The researchers said the GOC intervention resulted in more attention to palliative care in treatment plans, including increased use of physician directives about when to avoid cardiopulmonary resuscitation and other lifesaving measures in medical emergencies.

Researchers also analyzed differences in the number of transfers from the nursing homes to hospitals. The GOC intervention “resulted in half as many hospital transfers for nursing home residents with advanced dementia, without affecting survival,” they reported.

Dr. Hanson said transferring a person with advanced dementia from the familiarity of the nursing home where they live to an emergency department can be “very frightening and upsetting,” and may set the patient back even more. Transfers can be avoided if the problem, such as an infection, can simply be treated in the nursing home instead, she said.

Dr. Hanson said one goal in designing the intervention was to make it fairly easy to put in place. “We didn't want to make the training too intensive,” she said. Physicians at the nursing homes were invited to participate in the training, but none did. Dr. Hanson said her team is seeking grants to implement the tested model at other nursing homes, and they also hope to test a similar hospital-based intervention that focuses on palliative care.


Claire Creutzfeldt, MD, assistant professor of neurology at the University of Washington whose research focuses on patients with severe brain injuries, said the new study was especially noteworthy because it measurably demonstrated the ability to promote “goal concordance,” which means families and health care providers are working together to ensure “the patient receives treatment that is consistent with their goals and preferences.”

“Concordance is what we should all be striving for,” she said.

While do-not-resuscitate orders may be one aspect of a care plan for someone with advanced dementia, the overall goal should be aimed at “improving communication about goals of care and quality of life — the definition of providing palliative care,” said Dr. Creutzfeldt. “The study indicates that by training staff how to have end-of-life discussions with families, it leads to more goal concordance.”

Dr. Creutzfeldt said that discussions about goals of care should ideally start before someone progresses into the advanced stages of dementia. “Neurologists should be having conversations with their patients about prognosis, goals of care, and patient values and preferences,” she said.

David Y. Hwang, MD, assistant professor in the division of neurocritical care and emergency neurology at Yale School of Medicine, said it may be more difficult for clinicians to discuss holding off on aggressive treatment with families once a nursing home patient has been sent to the hospital and everyone is in an “emergency” mode. He said having a goals-of care plan in place can prevent someone “from ending up in the emergency department in the first place.”

Dr. Hwang, whose research focuses on ways to improve surrogate decision making in neuro-intensive care units (ICUs), said structured decision aids, such as the one used in the UNC study, have the potential to help patients and caregivers facing all sorts of medical situations, from outpatient encounters regarding joint replacement surgery to inpatient ICU decisions about life support.

“There is evidence to show that a lot of people get aggressive treatment that they would not want. That is what the data suggest, especially for dementia,” Dr. Hwang said. “The idea behind decision aids and similar interventions is to help families understand what options are out there and make appropriate shared decisions with clinicians that reflect patient preferences.”

Jason Karlawish, MD, professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania, said the study provided solid evidence that “if you take the time to train long-term care practitioners, in particular the nursing home staff, on how to talk with families you can actually improve care.”

He said a goals-of-care approach similar to what was used in the study should be the “standard of care” at all nursing homes, with the goal of helping patients get the care they need to flourish in their “home, not an acute-care setting.”

“The problem is, how do you create both a professional culture and a system of care that expects this?” said Dr. Karlawish, co-director of Penn Memory Center. He said he is concerned about the threatened appeal of the Affordable Care Act (ACC), which contains provisions aimed at improving and the quality of nursing home care.

[The ACC includes provisions to ensure transparency of information about nursing home ownership and financial accountability, staff training and background checks, as well as promotes shared decision-making between physicians, their patients, and families.]


• Hanson LC, Zimmerman S, Song M-K, et al. Effect of the goals of care intervention for advanced dementia: A randomized clinical trial JAMA Intern Med 2016; Epub 2016 Nov 28.
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