Supported Decision Making With People at the Margins of Autonomy

A. Peterson, J. Karlawish & E. Largent (2020) 

The American Journal of Bioethics

DOI: 10.1080/15265161.2020.1863507

Abstract

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research.

Here is an excerpt:

Are Beneficiaries Authorized to Enter into a Supported Decision-Making Agreement?

The need for supported decision making implies that a beneficiary has diminished decision-making capacity. But there is a presumption that she is still capable to enter into a supported decision-making agreement. What justifies this presumption?

One way to address this challenge is to distinguish the capacity to enter into a supported decision-making agreement from the capacity to make the kinds of decisions enumerated in the agreement. For example, it is recognized in U.S. law that people who lack capacity to make medical decisions at the end of life may still have capacity to assign a surrogate decision maker (Kim and Appelbaum 2006). This practice is justified because the threshold of capacity required to appoint a surrogate is lower than that to consent to more complex decisions. Similarly, the kinds of decisions enumerated in supported decision-making agreements will often be complex and could result in unfortunate consequences if poor decisions are made. But the decision to enter into a supported decision-making agreement is relatively less complex. Moreover, these agreements are often formalizations of ongoing, trusting relationships with friends and family intended to enhance a beneficiary’s wellbeing. Thus, the threshold of capacity to enter into a supported decision-making agreement is justifiably low. People with marginal capacity would reasonably satisfy this threshold.

This response, however, raises questions about the minimum level of decision-making capacity required to enter into a supported decision-making agreement. The project of supported decision making would benefit from future scholarship that describes the specific decisional abilities that show a person with dynamic impairments can (or cannot) enter into a valid supported decision-making agreement.

The article is here.

Drug Addiction Seen as 'Moral Failing,' Survey Finds

By Robert Preidt
HealthDay Reporter
Originally posted on October 3, 2014

People with drug addiction are much more likely to face stigma than those with mental illness because they're seen as having a "moral failing," according to a new survey.

The poll of more than 700 people across the United States also found that the public is less likely to approve of insurance, housing and employment policies meant to help people with drug addiction.

The study results suggest that many people consider drug addiction a personal vice rather than a treatable medical condition, according to the Johns Hopkins Bloomberg School of Public Health researchers.

The entire article is here.

Prolonging Life: Legal, Ethical, and Social Dilemmas

The Nour Foundation
Exploring Meaning and Commonality in Human Experience




An absolutely fascinating discussion on end of life issues.

Antipsychotics: Taking the Long View

By Thomas Insel
NIMH Director's Blog
Originally published on August 28, 2013

Here is an excerpt:

An article recently posted online in JAMA-Psychiatry tells an interesting story about medications and recovery.1 Wunderink and colleagues from the Netherlands report on a seven-year follow-up of 103 people with schizophrenia and related disorders who had experienced a first episode of psychosis between 2001 and 2002. After six months of symptomatic remission following antipsychotic treatment, patients were randomly assigned to either maintenance antipsychotic treatment or a tapering-off and discontinuation of the drug. As expected, the group that stopped taking their medications experienced twice the relapse rates in the early phase of the follow-up. But these rates evened out after a few years, as some patients in the maintenance group also stopped taking their medication. Most important, by seven years, the discontinuation group had achieved twice the functional recovery rate: 40.4 percent vs. only 17.6 percent among the medication maintenance group. To be clear, this study started with patients in remission and only 17 of the 103 patients—21 percent of the discontinuation group and 11 percent of the maintenance group—were off medication entirely during the last two years of follow-up. An equal number were taking very low doses of medication—meaning that roughly one-third of all study patients were eventually taking little or no medication.

Emphasis added.

The entire blog post is here.

Thanks to Tom Fink for this story.

The Woman Who Ate Cutlery

By CHRISTINE MONTROSS
The New York Times - Opinion
Published: August 3, 2013

Here are some excerpts:

The costs of M’s repeated hospitalizations are staggering. Her ingestions and insertions incur the already high costs of hospital admission and the medical procedures and surgeries she requires. In addition, once M is hospitalized as a psychiatric patient, a staff member must stay with her at all times to make sure she doesn’t ingest utensils from her meal trays, insert tools from group craft activities into her body or drink Purell from the dispensers on the unit walls.

(cut)

In one of the ironies in a country with health care discrepancies, a single hospital admission for M — paid for by the taxpayer-financed state medical-assistance program — costs more than a year of private outpatient care would.

The entire article is here.

Thanks to Tom Fink for the story.

Social Networking’s ‘Big Impact’ on Medicine

Eric Topol, MD
MedScape Today: The Creative Destruction of Medicine
Originally posted July 17, 2012

Here are some excerpts:

Everybody is familiar with Facebook, which soon will have 1 billion registrants and be second only to China and India as far as a community or population. What isn't so much appreciated by the medical community is that our patients are turning to online health social networking. These are such Websites as PatientsLikeMe, CureTogether, and many others.

Interestingly, patients with like conditions -- often chronic conditions, such as multiple sclerosis, diabetes, or amyotrophic lateral sclerosis (ALS) -- will find patients with the same condition on these networking sites. And these virtual peers will become very much a key guidance source. This is so different from the past, when all information emanated from physicians. In fact, now many of these individuals who use social networks trust their virtual peers more than their physicians, so this is a real change that's taken place. In addition to this, the social networking platforms, which are free, offer an opportunity we haven't seen before.

The entire text and video are here.