AAN position statement 'timely and welcome' update on ethical considerations in dementia

An updated position statement issued by the American Academy of Neurology about ethical considerations that often arise in the treatment of patients with dementia revises the organization’s statement from 1996 on the same topic.

The statement, which was published in Neurology, “is not a clinical practice guideline,” according to the authors, though it does discuss how ethical considerations arise in caring for patients with dementia, according to the authors.

“Dementia care and scientific understanding have advanced considerably, including greater recognition of non-Alzheimer’s dementias and advances in genetics, brain imaging and biomarker testing,” Winston Chiong, MD, PhD, associate professor in the department of neurology’s Memory and Aging Center at the University of California, San Francisco and a member of the AAN’s Ethics, Law and Humanities Committee, said in a press release. “This [AAN] position statement focuses on day-to-day ethical problems faced by clinicians, patients and families in the course of dementia care.”

The changing landscape of dementia care, regarding scientific, clinical, legal/ethical and social issues, since the 1996 statement includes greater recognition of non-AD dementias and mixed dementias, advances in genetics, neuroimaging and biomarker testing, “broader but still unsatisfactory” treatment options, ongoing stigma and greater advocacy and more, according to Chiong and colleagues. The updated position statement includes four primary topics: the “complexities” of communicating a diagnosis of dementia or Alzheimer’s disease, making decisions in dementia care, management of symptoms as well as behavior and contextual issues.

Specific issues addressed within those broader topics include ethical concerns related to communicating a diagnosis, such as when family members may ask to withhold a diagnosis from the patient; differences between genetic or biomarker testing in patients with symptoms of dementia compared with testing in people with no symptoms who are thought to be at risk for dementia; “persistent” ethnic and racial disparities in dementia care, including increased risk for dementia among Black and Latino people and delayed diagnoses in the same groups; and a coordinated effort between clinicians and caregivers to monitor a person’s activities “to lessen risks while preserving their independence and dignity when possible,” according to the press release.

The position statement addressed “the potential for abuse,” calling on clinicians to recognize and document signs of physical abuse, isolation of the patient from family or friends, failure to pay for care and malnutrition, as well as ways to maintain care for a person continuing to reside at home. The authors also recognized that, while physician-hastened death is legal in some states, “such laws generally do not apply to people with dementia.” Finally, the statement acknowledged the “significant financial strain” related to dementia care and noted that “new ways of providing and financing long-term care are needed,” according to the press release.

Chiong and colleagues wrote that the “fragmentation” of the health care system exacerbates the challenge of providing high-quality dementia care, as do “incentives that often favor technical and invasive interventions over personal attention.” They acknowledged policy efforts that have encouraged “more integrated models of care delivery” while also noting it is uncertain whether it will be possible to enact these policies on a broader scale.

“Further research and policy innovations are needed to foster a practice environment in which neurologists can best provide care that is respectful of patient autonomy, advances patients’ welfare and minimizes harms and in which the benefits of care are distributed justly among all patients,” the researchers wrote.

In a related editorial, Laura S. Boylan, MD, an adjunct professor in the department of neurology at NYU Grossman School of Medicine, called the revised position statement “timely and welcome” while also acknowledging the “staggering” impact of dementia on a physical, psychosocial and economic scale. Boylan acknowledged “notable” changes from the 1996 statement, including “a tilt toward full and timely truth telling” as well as the idea that physicians should consider, “or even encourage,” nursing home care as something other than a last resort and the call for an increase in the number of dementia-friendly long-term care facilities. She also acknowledged that the discussion regarding physician-assisted death opened “a door to the view that patient death may, in selected circumstances, be a worthy and ethical goal in its own right rather than an incidental side effect of palliative care.”

According to Boylan, neurologists “have a unique perspective on the frontlines of bioethics.” She described the updated position statement as a “navigational map” that describes potential hazards and frameworks for care rather than “rigid” rules.

“We live in an age of ‘omics’ in which personalized medicine references molecular biology rather than human relationships,” Boylan wrote. “This revised position statement should help neurologists face the challenges of the new without letting go of core values. Despite all, the patient encounter remains intimate and privileged, personal and personalized. It must never be lost that ‘the secret of the care of the patient is in caring for the patient.’”

References:

American Academy of Neurology. AAN issues ethical guidance for dementia diagnosis and care. Available at: https://www.aan.com/PressRoom/Home/PressRelease/4908. Accessed July 12, 2021.

Boylan LS, et al. Neurology. 2021;doi:10.1212/WNL.0000000000012086.

Chiong W, et al. Neurology. 2021;doi: 10.1212/WNL.0000000000012079.