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Welcome to the nexus of ethics, psychology, morality, technology, health care, and philosophy
Showing posts with label Neurodegenerative Disorders. Show all posts
Showing posts with label Neurodegenerative Disorders. Show all posts

Friday, February 26, 2021

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.

Friday, July 1, 2016

Predictive genetic testing for neurodegenerative conditions: how should conflicting interests within families be managed?

Zornitza Stark, Jane Wallace, Lynn Gillam, Matthew Burgess, Martin B Delatycki
J Med Ethics doi:10.1136/medethics-2016-103400

Abstract

Predictive genetic testing for a neurodegenerative condition in one individual in a family may have implications for other family members, in that it can reveal their genetic status. Herein a complex clinical case is explored where the testing wish of one family member was in direct conflict to that of another. The son of a person at 50% risk of an autosomal dominant neurodegenerative condition requested testing to reveal his genetic status. The main reason for the request was if he had the familial mutation, he and his partner planned to utilise preimplantation genetic diagnosis to prevent his offspring having the condition. His at-risk parent was clear that if they found out they had the mutation, they would commit suicide. We assess the potential benefits and harms from acceding to or denying such a request and present an approach to balancing competing rights of individuals within families at risk of late-onset genetic conditions, where family members have irreconcilable differences with respect to predictive testing. We argue that while it may not be possible to completely avoid harm in these situations, it is important to consider the magnitude of risks, and make every effort to limit the potential for adverse outcomes.

The article is here.

Friday, September 4, 2015

Neurodegeneration and Identity

Nina Strohminger and Shaun Nichols
Psychological Science Online First, published on August 12, 2015
doi:10.1177/0956797615592381

Abstract

There is a widespread notion, both within the sciences and among the general public, that mental deterioration can rob individuals of their identity. Yet there have been no systematic investigations of what types of cognitive damage lead people to appear to no longer be themselves. We measured perceived identity change in patients with three kinds of neurodegenerative disease: frontotemporal dementia, Alzheimer’s disease, and amyotrophic lateral sclerosis. Structural equation models revealed that injury to the moral faculty plays the primary role in identity discontinuity. Other cognitive deficits, including amnesia, have no measurable impact on identity persistence. Accordingly, frontotemporal dementia has the greatest effect on perceived identity, and amyotrophic lateral sclerosis has the least. We further demonstrated that perceived identity change fully mediates the impact of neurodegenerative disease on relationship deterioration between patient and caregiver. Our results mark a departure from theories that ground personal identity in memory, distinctiveness, dispositional emotion, or global mental function.

The entire article is here.

Memory and Morality: What Determines How Others See Us?

By Kathleen Lees
Science World Report
Originally published August 17, 2015

Here is an excerpt:

Statistical models also showed that perceived identity change was strongly linked with change in moral traits, with close to no other symptom, including depression, amnesia, and changes in personality traits, holding observable impact on perceived identity change.

Furthermore, the researchers based the degree of perceived identity change on how much they felt their relationship with the patient had deteriorated, as well as the association that was driven by the degree of change in the patient's moral traits.

Researchers also found that the degree of perceived identity change was associated with how much the participants thought their relationship with the patient had deteriorated, and this association was driven by the degree of change in the patient's moral traits.

The entire article is here.