Truth-Telling, Genetic Testing, Biomarkers Addressed in Dementia Statement

Truth-telling and diagnosis disclosure, genetic and biomarker testing, and requests for physician-assisted death are among the topics addressed in a new position statement about ethics in dementia care.

The guidance, developed by the Ethics, Law, and Humanities Committee of the American Academy of Neurology (AAN), American Neurological Association, and Child Neurology Society, was published in Neurology. It updates the 1996 AAN ethics position statement.

“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,” said committee member Winston Chiong, MD, PhD, of the University of California San Francisco, who co-authored the new statement.

“The ‘ripple effect’ of dementia is really a tsunami for families, caregivers, taxpayers, and health care systems,” noted Laura Boylan, MD, of New York University Grossman School of Medicine and Bellevue Hospital in New York City, in an editorial accompanying the position statement. “Myriad ethical issues pertinent to the clinical practice of neurology are presented in relief in dementia care.”

The guidance addresses subjects that include:

• Truth-telling and diagnosis disclosure
• Alzheimer’s and non-Alzheimer’s dementias
• Genetic and biomarker testing
• Appropriate involvement of the patient at various dementia stages
• Advanced care planning
• Making decisions for patients without capacity
• Balancing independence and risk in early dementia stages
• Agitation and disruptive behavior in moderate stages
• Hospice and prognosis in advanced stages
• Requests for physician-hastened death

“The discussion of physician-assisted death opens 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,” Boylan observed. While 10 states have expanded laws to allow physician assistance, “almost no one with dementia would meet existing legal criteria for eligibility for physician aid in dying” in the U.S., she noted.

The position paper also looks at the financial effects of dementia, the role of caregivers, abusive behavior toward dementia patients, and socioeconomic, racial, ethnic, and cultural factors of dementia care.

This guidance was developed before the new Alzheimer’s treatment aducanumab (Aduhelm) received FDA approval and does not discuss that drug.

“The 1996 position statement was clear: the practicing neurologist’s mission was to emphasize care over cure,” Boylan pointed out.

However, she noted the new position statement is less clear on this. “Forward-facing statements are made regarding pipeline treatments with potentially skyrocketing costs as attention is simultaneously drawn to barriers to access even basic care for many.”

“Caring for patients with dementia requires respecting patient autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care in accordance with other core ethical principles (beneficence, justice, and nonmaleficence),” Chiong and co-authors noted.

While these ethical principles remain unchanged, “neurologists must reconsider how to apply them given changes across multiple domains including our understanding of disease, clinical and legal tools for addressing manifestations of illness, our expanding awareness of the crucial role of family caregivers in providing care and maintaining patient quality of life, and societal conceptions of dementia and individuals’ personal expectations for aging,” they wrote.

The statement summarizes day-to-day considerations that often emerge when caring for patients with dementia, Chiong and colleagues added. Although it addresses how these issues may influence patient management, it is not a clinical practice guideline, they emphasized.