Advance Directives Critical for Elderly Still at Home

By Sondra Forsyth

More than 70% of elderly Medicare beneficiaries experience cognitive impairment or severe dementia near the end of life and may need surrogate decision makers for healthcare decisions. Advance care planning for older adults with dementia may be particularly important for individuals who do not reside in a nursing home or a long-term care facility, according to research done at at the Johns Hopkins Bloomberg School of Public Health and published in the April 2014 issue of Health Affairs.

The team reviewed data from the Health and Retirement Study (HRS) linked to Medicare claims to identify the differences between the type of care given to dementia patients in nursing homes and those who remain in the community. Cognitive impairment was common among seniors living in nursing homes and among those remaining in the community.

A release from Johns Hopkins quotes lead author Lauren Hersch Nicholas, PhD, MPP as saying, "We found that more than half of older adults living on their own or with family members in the last year of life were cognitively impaired. These patients were treated much more aggressively, than similar patients who lived in nursing homes, potentially because their memory impairment was not known to emergency healthcare providers and or their preferences for care were not known or clear to the family members, caregivers or surrogate decision makers."

The findings are believed to be the first to estimate the prevalence of cognitive impairment and dementia at the end of- ife and examine the associated healthcare costs and utilization for community dwellers.

The research indicates there is an important difference in the relationship between advance directive use and end-of-life care between patients in the community compared to nursing home patients. Memory-impaired patients without advance directives received aggressive end-of-life care and potentially inappropriate care, especially if they did not reside in a healthcare facility.

"Dementia is often under-recognized as a terminal, progressive condition, which can result in end-of-life care that can be burdensome, painful, costly and unlikely to improve quality of life or survival. Like previous studies that focused only on nursing home residents, we found higher rates of life-sustaining treatment, ICU use, and in-hospital death among dementia patients living in the community than might be expected given their prognosis," said Nicholas.

The study results suggest that advance directives may have a more important role on treatment decisions for patients living in the community with severe dementia, who likely lack the capacity to participate in medical decision-making, than for those living in nursing homes. Efforts to engage patients and family members in advance care planning when cognitive impairment is first diagnosed and patients are still living in the community can help to ensure that a surrogate decision-maker is identified and alerted to the patient's preferences while these conversations are possible.

While additional research is needed to determine whether advance directives cause differences in end-of-life care for older adults with severe dementia, efforts to educate both patients and their families about dementia and its progression at initial diagnosis may be necessary to prompt all relevant family members, caregivers and surrogates to learn about a patient's preferences, prognosis and end-of-life requests.

Funding for the study was provided by The National Institute on Aging.