This post is a preview of a presentation for the Baruch A. Brody
Lecture in Bioethics. Want to learn more about this topic? Tune into
the lecture Feb. 7 at noon CT. Register Today! Coupon code for Baylor physicians: BIOETHICS23
Dementia – the progressive loss of cognitive and behavioral abilities
to an extent that interferes with daily life – is among the most feared
conditions of old age. What ignites such fear? It’s not merely or even
primarily the prospect of physical suffering. Rather, it’s that our
society places significant emphasis on independence and on the ability
to self-determine. Rational thinking and memory are needed to engage in
daily tasks independently; dementia robs people of exactly these skills,
threatening autonomy.
Numerous diseases cause dementia. The most common of these is
late-onset Alzheimer’s disease (AD). Historically, AD has been a
clinical diagnosis. This meant that it was diagnosed based on the
detection of dementia with a characteristic onset and pattern of
cognitive and functional impairments.
Now, however, research is pulling the threads of AD and dementia apart. Clinicians and researchers can use biomarkers to identify AD neuropathology in vivo, rather than post mortem.
There is evidence that AD biomarkers begin accumulating years or even
decades before the onset of cognitive impairment. This means that we can
reconceptualize AD as a continuum disorder – one that begins in a
preclinical stage (defined by the presence of pathology in the absence
of cognitive impairment) and moves through a prodromal stage before the
individual experiences Mild Cognitive Impairment or dementia.
In prior work, I have conducted interview studies with cognitively unimpaired older adults
to understand how they react to learning that they are at increased
risk for developing dementia caused by AD because they have AD
biomarkers. I’ve found that many individuals note the information has
unique implications for their identity, but they also find it empowering
because it allows them to plan for the possibility of cognitive
impairment.
They choose to
share this information with others,
particularly family members, because it allows them to make plans for
caregiving and surrogate decision-making. Similarly, when I have
interviewed
family members
of older adults who’ve learned AD biomarker information, they also
discuss the importance of planning. They envision themselves stepping
into a
caregiver role in the future.
Once we envision AD as a continuum disorder and we realize the
importance patients and families place on planning ahead, we can see the
urgent need to find new approaches to protect and promote autonomy and
support patient wellbeing across the Alzheimer’s continuum.
Unfortunately, the law and ethics are currently lagging behind scientific progress.
One promising means of helping patients is supported decision-making,
in which an adult with cognitive impairment (called a beneficiary)
identifies one or more trusted others (called supporters) to assist them
in decision-making. The domains and types of decision-making assistance
are specified by the beneficiary, and the resulting decisions are the
beneficiary’s own. While Texas was the first state in the U.S. to
recognize supported decision-making in law—and nearly half of states now
recognize or are considering recognizing supported
decision-making—there is an ongoing need to spread awareness and
increase the uptake of this important tool.
In my 2023 Baruch A. Brody Award Lecture, I will:
- Discuss AD as a disease of autonomy
- Describe how our evolving scientific understanding of AD requires that we find new social approaches to AD
- Present supported decision making as an ethically and legally appealing approach
By Dr. Emily A. Largent, the Emanuel & Robert Hart Assistant
Professor of Medical Ethics and Health Policy at the University of
Pennsylvania Perelman School of Medicine and a Greenwall Faculty Scholar
in Bioethics. She is the recipient of the 2022-2023 Baruch A. Brody
Award & Lecture in Bioethics sponsored by the Baylor College of
Medicine Center for Medical Ethics and Health Policy, Houston Methodist
and the Rice University Department of Philosophy.
Full Article & Source:
Supporting decision making as cognition declines
