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.

Small Victories: Texas social workers will no longer be allowed to discriminate against LGBTQ Texans and people with disabilities

Edgar Walters

Texas Tribune

Originally posted 27 Oct 20

After backlash from lawmakers and advocates, a state board voted Tuesday to undo a rule change that would have allowed social workers to turn away clients who are LGBTQ or have a disability.

The Texas Behavioral Health Executive Council voted unanimously to restore protections for LGBTQ and disabled clients to Texas social workers’ code of conduct just two weeks after removing them.

Gloria Canseco, who was appointed by Gov. Greg Abbott to lead the behavioral health council, expressed regret that the previous rule change was “perceived as hostile to the LGBTQ+ community or to disabled persons.”

“At every opportunity our intent is to prohibit discrimination against any person for any reason,” she said.

Abbott's office recommended earlier this month that the board strip three categories from a code of conduct that establishes when a social worker may refuse to serve someone.

The info is here.

Congratulations to all who help right a wrong in the mental health profession.

Study questions why thousands with developmental disabilities are prescribed antipsychotics

Peter Goffin
The Toronto Star
Originally published August 23, 2017

Researchers with the Centre for Addiction and Mental Health and the Institute for Clinical Evaluative Sciences have called for “guidelines and training around antipsychotic prescribing and monitoring” for doctors, pharmacists and care home staff after finding that nearly 40 per cent of people with developmental disabilities were prescribed antipsychotic drugs at some point over a six-year period.

One-third of the patients prescribed antipsychotics had no documented diagnosis of mental illness, according to the study, which tracked more than 51,000 people with developmental disabilities who are eligible for provincial drug benefits.

“We don’t know, with the data, why this one person was prescribed or this (other) person was prescribed so we’re trying to almost guess at why,” said psychologist Yona Lunsky, lead author of the study.

“It could be behaviour, aggression, self-injury, agitation.”

For people with developmental disabilities who live in group homes, the rate of antipsychotic prescriptions was even higher.

About 56 percent of developmentally disabled group home residents were prescribed antipsychotics. Of those, around 43 percent had no documented mental health issues.

The article is here.

Enhancement as Nothing More than Advantageous Bodily and Mental States

by Hazem Zohny
BMJ Blogs
Originally posted May 20, 2016

Some bodily and mental states are advantageous: a strong immune system, a sharp mind, strength.  These are advantageous precisely because, in most contexts, they are likely to increase your chances of leading a good life.  In contrast, disadvantageous states – e.g. the loss of a limb, a sense, or the ability to recall things – are likely to diminish those chances.

One way to think about enhancement and disability is in such welfarist terms.  A disability is no more than a disadvantageous bodily or mental state, while to undergo an enhancement is to change that state into a more advantageous one – that is, one that is more conducive to your well-being.  This would hugely expand the scope of what is considered disabling or enhancing.  For instance, there may be all kinds of real and hypothetical things you could change about your body and mind that would (at least potentially) be advantageous: you could mend a broken arm or stop a tumour from spreading, but you could also vastly sharpen your senses, take a drug that makes you more likeable, stop your body from expiring before the age of 100, or even change the scent of your intestinal gases to a rosy fragrance.

The article is here.

Why Bioethics Needs a Disability Moral Psychology

Joseph A. Stramondo
Hastings Center Report
Volume 46, Issue 3, pages 22–30, May/June 2016

Abstract

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide.


The tension between the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement.

The article is here.

Against a singular understanding of legal capacity: Criminal responsibility and the Convention on the Rights of Persons with Disabilities

By Jullian Craigie
International Journal of Law and Psychiatry
Volume 40, May–June 2015, Pages 6–14

Abstract

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being used to argue for wider recognition of the legal capacity of people with mental disabilities. This raises a question about the implications of the Convention for attributions of criminal responsibility. The present paper works towards an answer by analysing the relationship between legal capacity in relation to personal decisions and criminal acts. Its central argument is that because moral and political considerations play an essential role in setting the relevant standards, legal capacity in the context of personal decisions and criminal acts should not be thought of as two sides of the same coin. The implications of particular moral or political norms are likely to be different in these two legal contexts, and this may justify asymmetries in the relevant standards for legal capacity. However, the analysis highlights a fundamental question about how much weight moral or political considerations should be given in setting these standards, and this is used to frame a challenge to those calling for significantly wider recognition of the legal capacity of people with mental disabilities on the basis of the Convention.

The entire article is here.

Prostitution, Harm, and Disability: Should Only People with Disabilities be Allowed to Pay for Sex?

By Brian D. Earp
BMJ Blogs
Originally posted June 17, 2015

Introduction

Is prostitution harmful? And if it is harmful, should it be illegal to buy (or sell) sexual services? And if so, should there ever be any exceptions? What about for people with certain disabilities—say—who might find it difficult or even impossible to find a sexual partner if they weren’t allowed to exchange money for sex? Do people have a “right” to sexual fulfillment?

In a recent issue of the Journal of Medical Ethics, Frej Klem Thomsen[1] explores these and other controversial questions. His focus is on the issue of exceptions—specifically for those with certain disabilities. According to Thomsen, a person is “relevantly disabled” (for the sake of this discussion) if and only if:

(1) she has sexual needs, and desires to exercise her sexuality, and

(2) she has an anomalous physical or mental condition that, given her social circumstances, sufficiently limits her possibilities of exercising her sexuality, including fulfilling her sexual needs. (p. 455)

There is a lot to say here.

The entire article is here.

VA Is Broken: Death, Medical Mistreatment, Claims Backlogs And Neglect

By Jamie Reno
International Business Times
Originally posted on November 27, 2013

Here is an excerpt:

One presidential administration after another has vowed to fix the embattled VA, which employs more than 300,000 men and women and is the second largest department in the federal government after the Pentagon. President Obama has even increased VA's annual budget to an all-time high of $150 billion. But VA’s health care system continues to worsen in more and more dangerous ways, severely underserving the nearly 7 million veterans who rely on the network for care annually.

In just the past year, we've learned about at least 21 preventable deaths of military veterans at VA facilities across the nation as well as the spread of infectious diseases at these hospitals and clinics. In addition, there is evidence of bonuses awarded to executives at troubled VA hospitals and a lengthy ongoing disability claims backlog. Meanwhile, frustrated lawmakers hold hearings on VA shortcomings, adopt new rules in hopes of turning the VA around, and even create websites highlighting VA's many problems -- to no avail.

“It’s become apparent to me and many others that there is a culture of complacency among the agency’s middle management,” Rep. Jeffrey Miller (R-Fla.), chair of the House Veterans Affairs Committee (HVAC), told International Business Times.

The entire story is here.

Vignette 28: Another Point of View

A psychologist who completes evaluations for the Bureau of Disability Determination (BDD) calls you for a consultation.

Earlier in the day, the psychologist evaluated a 48-year-old male with a history of chronic pain.  The only documentation received from BDD was a list of medications, which included an antidepressant and a prescription sleep aid.

The disability applicant arrived late for the evaluation, reporting that his pain prevented him from being on time.  He shuffled his feet, walked in a hunched manner, used a cane, shifted in his seat frequently, and groaned throughout the evaluation.  He described rather significant cognitive and vegetative symptoms of depression.  He began to cry softly at one point when discussing the negative consequences of chronic pain.  When asked about outpatient psychological treatment, the disability applicant explained he did not know that psychotherapy could help, and he would be anxious to try therapy.

At the end of the evaluation, the patient left, shuffling and making muffled groans as he left the office and the waiting room.  When the psychologist returned to his office, he remembered a lunch date for which he was late.  As he was leaving the office building, the psychologist saw the disability applicant in the parking lot laughing with another person.  He twirled his cane with one hand.  He stood upright and seemed genuinely happy.  When the disability applicant met the psychologist’s gaze, the applicant immediately hunched over, grabbed his back, groaned loudly, and used the cane to steady himself.  The psychologist hopped in his car for lunch without any discussion with the applicant.

Knowing that BDD evaluations are used within a legal context (in that lawyers, other psychologists, and administrative law judges will see this report), the psychologist asks the following questions:

1. What are the psychologist's ethical duties to the BDD?

2. What are the psychologist's ethical duties to the applicant?

3. Is the psychologist permitted to use any of his observations outside of the office as part of his report? If so, why?  If not, why not?

4. If so, should it be included as an addendum or as part of the body of the report?

5. In either case, how do these observations influence the psychologist’s rating of truthfulness or veracity during the evaluation?

6. Does the psychologist have any obligation to clarify what happened in the parking lot with the disability applicant by phone?

7. If not, how should the psychologist respond if the disability applicant calls him to discuss the evaluation or the interaction in the parking lot?

8. Is it appropriate to use the term “malingering” in the report, given that there is such a small sample of behavior?

The Half-Trillion-Dollar Depression

By CATHERINE RAMPELL
The New York Times
Published: July 2, 2013

Mental illness has been an increasingly significant health concern over the past several decades, but it’s now becoming an economic one too. The number of Americans who receive Social Security Disability Insurance for mental disorders has doubled during the past 15 years. Eliza is now one of an estimated 11.5 million American adults with a debilitating mental illness, on whom the country spends about $150 billion annually on direct medical costs — therapy, drugs, hospitalizations and so forth. But the biggest blow to the overall economy are the many hidden, indirect costs. People with serious mental illness earn, on average, $16,000 less than their mentally well counterparts, totaling about $193 billion annually in lost earnings, according to a 2008 study published in The American Journal of Psychiatry. And many mentally ill workers, who are more likely to miss work, also suffer from what social scientists call presenteeism — the opposite of absenteeism — in which they are very likely to be less productive on the job when they show up.

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Even though tens of millions of people will get more coverage, estimates suggest that only 1.15 million new users will take advantage of mental-health services. A lot of people who will be extended coverage don’t need care; others, fearful of the stigma around mental health, may not take it. What’s more distressing, from both an economic and a social perspective, is that a lot of people who do muster the courage still won’t get the right kind of treatment. About half of Americans who seek care for serious mental illnesses get treatment that does not help them or is not even recommended for their condition.

The entire article is here.

Suit claims Pa. prison system inflicts cruel, unusual punishment on mentally ill

By Maiken Scott
Newsworks
Originally published March 11, 2013

The Disability Rights Network is suing the Pennsylvania Department of Corrections, claiming that housing seriously mentally ill prisoners in solitary confinement is unconstitutional.

In the lawsuit, the advocacy organization claims about 800 Pennsylvania prisoners with severe mental illnesses are incarcerated in "restricted housing units," where they dwell in small, single cells for at least 23 hours a day, with the lights on the entire time. The suit calls this cruel and unusual punishment.

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Pennsylvania's Department of Corrections would not comment on the suit, but officials said that of the state's 51,300 prisoners, about 20 percent are known to have mental health issues.

The entire article is here.

Doctor Tells U.S. Judge He Created Fake L.I.R.R. Injury Claims

By THE ASSOCIATED PRESS
Published: January 18, 2013

An orthopedist who was accused of taking cash payments for fake diagnoses and billing health insurance companies for unnecessary medical treatment in widespread disability fraud involving Long Island Rail Road workers pleaded guilty on Friday to conspiracy charges.

The doctor, Peter J. Ajemian, admitted that between the late 1990s and 2008 he invented “narratives” to justify illness and injury claims for hundreds of workers seeking to retire on disability.

The employees “were not in fact disabled and could have continued working in their railroad jobs, as they had no complaint right up to the time of their retirement date,” Dr. Ajemian told a judge in Federal District Court in Manhattan.

Prosecutors said that Dr. Ajemian, 63, received up to $1,200 for each of the fake assessments, as well as millions of dollars in health insurance payments. His patients received more than $90 million in disability benefits.

Dr. Ajemian was among 32 defendants who have been arrested in the past two years.

Three other retirees also pleaded guilty this week, bringing the number of guilty pleas in the case to 21.

Sentencing for Dr. Ajemian was set for May 24.

The story is here.

Psychologist pleads guilty to $1.5M fraud scheme

KUSI News Release
San Diego, California
Originally published on August 3, 2012


A clinical psychologist from National City admitted in federal court Thursday to immigration and Social Security fraud in connection with a scheme to falsify medical certifications to the federal government.

Roberto J. Velasquez, 55, pleaded guilty to two criminal counts during a hearing before Magistrate Judge William McCurine Jr. in San Diego.

Velasquez admitted to falsely certifying that dozens of patients were disabled and therefore eligible for disability benefits or exemptions from immigration requirements, according to the U.S. Attorney's Office.

The entire story is here.

Thanks to Ken Pope for this story.

Pentagon Chief Orders Review of Mental Diagnoses

By Donna Cassata
ABCNews.com
Originally published June 13, 2012

Under questioning from a Senate panel on Wednesday, Panetta disclosed that he had asked the Air Force and Navy, which includes the Marine Corps, to follow the lead of the Army in launching an independent study of how it evaluates soldiers with possible post-traumatic stress disorder. Panetta's answer marked the first time that the Pentagon chief had said publicly that he had requested the review by all the services.

Defense Secretary Leon Panetta

The Army review was prompted in part by reports that the forensic psychiatry unit at Madigan Army Medical Center at Joint Base Lewis-McChord in Washington state may have reversed PTSD diagnoses based on the expense of providing care and benefits to members of the military. In recent years, the number of PTSD and traumatic brain injury cases has increased significantly as the Iraq war drew to a close after nearly a decade and the Afghanistan conflict enters its second decade.

Th entire story is here.

Army to Review Its Handling of Psychiatric Evaluations

By James Dao
The New York Times
Originally published on May 16, 2012

The Army said Wednesday that it had ordered a service-wide review of how its doctors diagnose psychiatric disorders, indicating that complaints about unfair diagnoses at a sprawling base in Washington State have been echoed on installations around the country.

The review, announced jointly by the Army secretary, John M. McHugh, and chief of staff, Gen. Raymond T. Odierno, will focus on whether consistent and accurate diagnoses are being issued by the disability evaluation system, which determines whether injured soldiers are fit to remain on duty.

Concerns about the system emerged last fall after soldiers at Joint Base Lewis-McChord in Tacoma told Senator Patty Murray, a Democrat of Washington, that their diagnoses of post-traumatic stress disorder had been changed by doctors at Madigan Army Medical Center to lesser conditions. The soldiers asserted that the changes were done to save the Army money.

The entire story is here.

Reports of Mental Health Disability Increase in US

ScienceDaily — The prevalence of self-reported mental health disabilities increased in the U.S. among non-elderly adults during the last decade, according to a study by Ramin Mojtabai, MD, PhD, of the Johns Hopkins Bloomberg School of Public Health. At the same time, the study found the prevalence of disability attributed to other chronic conditions decreased, while the prevalence of significant mental distress remained unchanged.

The findings will appear in the November edition of the American Journal of Public Health.

The entire story can be found here.