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.

America’s Schools Are a Moral and Medical Catastrophe

Laurie Garrett
foreignpolicy.com
Originally posted 24 July 20

After U.S. President Donald Trump demanded last week that schools nationwide reopen this fall, regardless of the status of their community’s COVID-19 epidemic status, his Secretary of Education Betsy DeVos was asked how this could safely be accomplished. She offered no guidelines, nor financial support to strapped school districts. Her reply was that school districts nationwide needed to create their own safety schemes and realize that the federal government will cut off funds if schools fail to reopen. “I think the go-to needs to be kids in school, in person, in the classroom,” she said in an interview on CNN on July 12.

This is nothing short of moral bankruptcy. The Trump administration is effectively demanding schools bend to its will, without offering a hint of expert guidance on how to do so safely, much less the necessary financing.

I can’t correct for the latter failure, of course. But here’s some information that will be of use to the many rightfully concerned parents and educators across the United States.

1. Should a national-scale school reopening be considered, at all?

Emphatically, no. The state of Florida’s data shows that 13 percent of children who have been tested for the novel coronavirus were found to be infected, and there’s a gradient of infection downward with age: Only 16 percent of these positive cases are in children 1 to 4 years old, whereas 29 percent are in those 15 to 17 years old. In Nueces County, Texas, 85 children under age 2 have tested positive for the coronavirus since March, killing one of them. The infections were likely caught from parents or older siblings. A South Korean government survey of 60,000 households discovered that adults living in households that had an infected child aged 10 to 19 years had the highest rate of catching the coronavirus—more so than when an infected adult was present. Nearly 19 percent of people living with an infected teenager went on to test positive for the virus within 10 days. A Kaiser Family Foundation study says some 3.3 million adults over 65 in the United States live in a home with at least one school-aged child, putting the elders at special risk.

The info is here.

County Jail or Psychiatric Hospital? Ethical Challenges in Correctional Mental Health Care

Andrea G. Segal, Rosemary Frasso, Dominic A. Sisti
Qualitative Health Research
First published March 21, 2018

Abstract

Approximately 20% of the roughly 2.5 million individuals incarcerated in the United States have a serious mental illness (SMI). As a result of their illnesses, these individuals are often more likely to commit a crime, end up incarcerated, and languish in correctional settings without appropriate treatment. The objective of the present study was to investigate how correctional facility personnel reconcile the ethical challenges that arise when housing and treating individuals with SMI. Four focus groups and one group interview were conducted with employees (n = 24) including nurses, clinicians, correctional officers, administrators, and sergeants at a county jail in Pennsylvania. Results show that jail employees felt there are too many inmates with SMI in jail who would benefit from more comprehensive treatment elsewhere; however, given limited resources, employees felt they were doing the best they can. These findings can inform mental health management and policy in a correctional setting.

The information is here.

The Problem With Satisfied Patients

A misguided attempt to improve healthcare has led some hospitals to focus on making people happy, rather than making them well.

Alexandra Robbins
The Atlantic
Originally published April 17, 2015

Here is an excerpt:

Patient-satisfaction surveys have their place. But the potential cost of the subjective scores are leading hospitals to steer focus away from patient health, messing with the highest stakes possible: people’s lives.

The vast majority of the thirty-two-question survey, known as HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) addresses nursing care. For example, in a section about nurses, the survey asks, “During this hospital stay, after you pressed the call button, how often did you get help as soon as you wanted it?”

This question is misleading because it doesn’t specify whether the help was medically necessary. Patients have complained on the survey, which in previous incarnations included comments sections, about everything from “My roommate was dying all night and his breathing was very noisy” to “The hospital doesn’t have Splenda.” A nurse at the New Jersey hospital lacking Splenda said, “This somehow became the fault of the nurse and ended up being placed in her personnel file.” An Oregon critical-care nurse had to argue with a patient who believed he was being mistreated because he didn’t get enough pastrami on his sandwich (he had recently had quadruple-bypass surgery). “Many patients have unrealistic expectations for their care and their outcomes,” the nurse said.

The entire article is here.

Catastrophic neglect of the basic sciences in medicine

The Lancet, Volume 379, Issue 9823, Page 1273, 7 April 2012

Talk with scientists who work in research-intensive schools of medicine and you hear a resonant message. The basic medical sciences are not only being neglected, they are being systematically eroded. This marginalisation will have damaging effects on clinical care over the next two decades. The foundations of fundamental knowledge about health will be fractured. The platform for applied research will have atrophied. Patient care will be harmed by the prevailing short-sighted and expedient approach to discovery science.

(cut)

The errors seem to be multiple. Project grants—3-year investments of modest sums (£300 000) into the careers of young scientists—have withered. Scientists tell us that this dramatic shift in policy—converting our funding bodies into versions of the Howard Hughes Medical Institute—is a laudable objective, but one with unanticipated negative consequences. Not the least of which is the excision of investment into future generations of young medical researchers. Such a perilous policy, pursued by some research councils and larger charities alike, is being driven by a political environment that emphasises big science and aggresive commercial returns on research investments.

The entire article is here.