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Showing posts with label Capacity. Show all posts
Showing posts with label Capacity. Show all posts

Monday, September 5, 2022

Advance directives for mental illness raise deep ethical questions

Tania Gergel
psyche.co
Originally posted 3 AUG 2022

Here is an excerpt:

What about the potential drawbacks? 

Medical ethicists worry that self-binding directives might allow involuntary treatment to be imposed on someone at an early stage of illness, while they are still capable of making an informed decision about treatment. How can we be sure that someone lacks what is known, in medical law, as ‘decision-making capacity’ and that we should be turning to the instructions in a document rather than what they are saying right now? Human rights advocates, such as the United Nations Committee on the Rights of Persons with Disabilities, go so far as to state that all involuntary treatment is a violation of an individual’s fundamental human rights.

The debate over self-binding directives has been working through these issues since the 1980s. However, one voice that was largely missing was the voice of ‘lived experience’. The arguments have gone backwards and forwards without asking the opinions of those who have the most intimate knowledge of what it is like to be unwell, and the likely consequences of illness; the very people who have found themselves hospitalised for mental illness and who may well have received involuntary treatment.

As part of ongoing research into mental health advance directives, our team at King’s College London conducted an internet survey in partnership with the charity Bipolar UK. We asked people who have lived with bipolar lots of questions about their views and any experiences of any forms of advance decision-making in relation to their condition. One of the questions we asked participants was whether they thought self-binding directives were a good idea and why they thought this. We found that 82 per cent of participants endorsed the self-binding directive idea, with the vast majority explaining this endorsement in terms of experiencing a determinate shift to distorted thinking and decision-making when they are unwell.

While ethicists might feel that the risk that someone retains decision-making capacity is a barrier to self-binding directives, many participants were adamant that their decision-making is impaired when they are unwell, and often mentioned ‘capacity’ in their responses, even though it was not alluded to within the questions themselves. A good example was this response:
You are unwell and lack capacity. I [recognise this now] looking back at when I was last sectioned, but my views were very different at the time due to my illness. It is my well views and opinions that should be acted upon.
Some people described this transition in terms of a shift of ‘self’, suggesting that illness makes them an entirely different person from their well self. As a philosopher working on medical ethics and law, I am particularly interested in questions about personal identity and illness, so it was fascinating to see answers such as this:
When psychotic or manic or depressed you can become another person and irrational. It is easy to make bad decisions when ill that may not be in my best interest.
When participants referred to the practical consequences and risks of illness, they were often related to suicide. People talked about how their ill self impelled them towards death in a way that was utterly inconsistent with their wishes when well.

Wednesday, August 31, 2022

Narrative Capacity

Toomey, James, (August 31, 2021).
100 N.C. L. Rev. 1073
Available at SSRN: https://ssrn.com/abstract=3914839

Abstract

The doctrine of capacity is a fundamental threshold to the protections of private law. The law only recognizes private decision-making—from exercising the right to transfer or bequeath property and entering into a contract to getting married or divorced—made with the level of cognitive functioning that the capacity doctrine demands. When the doctrine goes wrong, it denies individuals, particularly older adults, access to basic private-law rights on the one hand and ratifies decision-making that may tear apart families and tarnish legacies on the other.

The capacity doctrine in private law is built on a fundamental philosophical mismatch. It is grounded in a cognitive theory of personhood, and determines whether to recognize private decisions based on the cognitive abilities thought by philosophers to entitle persons in general to unique moral status. But to align with the purposes of the substantive doctrines of property and contract, private-law capacity should instead be grounded in a narrative theory of personal identity. Rather than asking whether a decision-maker is a person by measuring their cognitive abilities, the doctrine should ask whether they are the same person by looking to the story of their life.

This Article argues for a new doctrine of capacity under which the law would recognize personal decision-making if and only if it is linked by a coherent narrative structure to the story of the decision-maker’s life. Moreover, the Article offers a test for determining which decisions meet this criterion and explains how the doctrine would work in practice.

Conclusion

Scholars and courts have long recognized that the threshold doctrine of capacity in private law requires reform to meet the needs of our aging society.  What they have not clearly seen is the doctrine’s fundamental error—a philosophical misalignment between the legal test, based on the construct of personhood, and its purposes, which are concerned with personal identity. This Article has excavated this distinction. And it has articulated and evaluated an alternative.

We think of ourselves as stories and we make meaning of our lives through our stories. That is what is at stake in the doctrine of capacity—whether an individual may continue to write their story by making decisions and choices.  Concern for the stories of our lives should be a paramount guiding principle of the capacity doctrine. In short, courts should only intervene in our decision-making where the story we would tell with our choices ceases to be our story at all.

Thursday, August 22, 2019

New Jersey will allow terminally ill patients to end their lives

Taylor Romine
CNN.com
Originally posted July 1, 2019

Terminally ill adults in New Jersey will now be able to ask for medical help to end their lives.

In April, Gov. Phil Murphy signed the Medical Aid in Dying for the Terminally Ill Act. It goes into effect Thursday.

It allows adults with a prognosis of six months or less to live to get a prescription for life-ending medication.

Other jurisdictions that allow physician-assisted suicide are: California, Colorado, Oregon, Vermont, Washington, Hawaii, Montana and the District of Columbia.

The law requires either a psychiatrist or psychologist determine that the patient has the mental capacity to make the decision. The prescription is a series of self-administered pills that can be taken at home.

"Allowing residents with terminal illnesses to make end-of-life choices for themselves is the right thing to do," Murphy said in a statement.

The info is here.

Friday, October 5, 2018

Should Artificial Intelligence Augment Medical Decision Making? The Case for an Autonomy Algorithm

Camillo Lamanna and Lauren Byrne
AMA J Ethics. 2018;20(9):E902-910.

Abstract

A significant proportion of elderly and psychiatric patients do not have the capacity to make health care decisions. We suggest that machine learning technologies could be harnessed to integrate data mined from electronic health records (EHRs) and social media in order to estimate the confidence of the prediction that a patient would consent to a given treatment. We call this process, which takes data about patients as input and derives a confidence estimate for a particular patient’s predicted health care-related decision as an output, the autonomy algorithm. We suggest that the proposed algorithm would result in more accurate predictions than existing methods, which are resource intensive and consider only small patient cohorts. This algorithm could become a valuable tool in medical decision-making processes, augmenting the capacity of all people to make health care decisions in difficult situations.

The article is here.

Wednesday, May 10, 2017

Who Decides When a Patient Can’t? Statutes on Alternate Decision Makers

Erin S. DeMartino and others
The New England Journal of Medicine
DOI: 10.1056/NEJMms1611497

Many patients cannot make their own medical decisions, having lost what is called decisional capacity. The estimated prevalence of decisional incapacity approaches 40% among adult medical
inpatients and residential hospice patients and exceeds 90% among adults in some intensive care
units.3,4 Patients who lack capacity may guide decisions regarding their own care through an
advance directive, a legal document that records treatment preferences or designates a durable
power of attorney for health care, or both. Unfortunately,the rate of completion of advance directives
in the general U.S. population hovers around 20 to 29%, creating uncertainty about who will
fill the alternate decision-maker role for many patients.

There is broad ethical consensus that other persons may make life-and-death decisions on
behalf of patients who lack decisional capacity. Over the past few decades, many states have enacted
legislation designed to delineate decisionmaking authority for patients who lack advance directives. Yet the 50 U.S. states and the District of Columbia vary in their procedures for appointing and challenging default surrogates, the attributes they require of such persons, their priority ranking of possible decision makers, and dispute resolution. These differences have important implications for clinicians, patients, and public health.

The article is here.

Wednesday, August 3, 2016

Reason, Emotion, and Implanted Devices

by John D. Lantos
Bioethics.net
Originally published July 13, 2016

Pullman and Hodgkinson present a case that, it seems, should have been an easy one. A competent adult makes a simple request to discontinue a medical therapy. Further, it was a therapy that he’d already tried so personal experience informed his preference to discontinue therapy. His request was repeated over time. He was determined to have adequate decisional capacity. So why did both the physicians and the bioethicists consider this to be a difficult case?

There are certain cases that lead to such dilemmas. They are cases in which emotions tug us in one direction and reason tugs in another. The best example of this type of situation is the difference between withholding a treatment and withdrawing the same treatment. Bioethical principles suggest that these two actions are ethically equivalent. Legal precedent shows that the law treats them as comparable actions. Yet both health professionals and families say that the two actions feel very different. Another example is the difference between withdrawing life-support in a patient who is awake and alert compared to withdrawing life-support in a patient who is unconscious. If the diagnosis and prognosis are the same, then the fact of consciousness does not change the legality or morality of the action. But they feel very different.

The article is here.

Wednesday, June 1, 2016

Competence in chronic mental illness: the relevance of practical wisdom

Guy A M Widdershoven, Andrea Ruissen, Anton J L M van Balkom, & Gerben Meynen
J Med Ethics doi:10.1136/medethics-2014-102575

Abstract

The concept of competence is central to healthcare because informed consent can only be obtained from a competent patient. The standard approach to competence focuses on cognitive abilities. Several authors have challenged this approach by emphasising the role of emotions and values. Combining cognition, emotion and values, we suggest an approach which is based on the notion of practical wisdom. This focuses on knowledge and on determining what is important in a specific situation and finding a balance between various values, which are enacted in an individual's personal life. Our approach is illustrated by two cases of patients with obsessive–compulsive disorder.

The article is here.

Monday, May 2, 2016

Mental illness: Families cut out of care

Liz Szabo
USA TODAY
Originally posted April 14, 2016

Here is an excerpt:

The federal law, called the Health Insurance Portability and Accountability Act, or HIPAA, forbids health providers from disclosing a patient’s medical information without consent.

Unlike patients with physical conditions, people with serious mental illness often need help making decisions and taking care of themselves, because their illness impairs their judgement, says Jeffrey Lieberman,chairman of psychiatry at the Columbia University College of Physicians and Surgeons and director of the New York State Psychiatric Institute. In some cases, patients may not even realize they’re sick.

Excluding families can have a devastating impact on patients like these, Lieberman says.

Many health providers don’t understand what HIPAA actually allows them to say. As a result, they often shut families out, even in circumstances in which they’re legally allowed to share information, says Ron Manderscheid, executive director of the National Association of County Behavioral Health and Developmental Disability Directors.

The article is here.

Sunday, March 20, 2016

Depression, Capacity, and a Request to Discontinue Life-Sustaining Treatment.

A. M. Pena
American Journal of Bioethics (2015); 15(7): 70-1.

The Right to Refuse Life Sustaining Treatment

There is ethical and legal consensus that a patient has the right to refuse life-sustaining treatment (LST), as an expression of autonomy-based principles, when the patient demonstrates an appropriate degree of capacity, the decision is consistent with the patient's preferences and free from coercion, and when the burdens exceed the benefits of continued treatment.  For the purposes of this discussion, I assume that the left ventricular assistance device (LVAD) is a form of LST and that it may be ethically permissible to deactivate the device, which is largely in accordance with professional and ethical consensus.  As with other forms of LST, if the device is deactivated, then the patient would die from underlying physiological causes, namely, heart disease.  My objective for this commentary, however, is to discuss whether depression can impair capacity to the extent that it is an ethical contraindication for withdrawing LST.

The article is here.

Friday, April 10, 2015

Informed Consent Procedures with Cognitively Impaired Patients: A Review of Ethics and Best Practices

By L. M. Field and J. D. Calvert
Psychiatry Clin Neurosci. 2015 Mar 10
doi: 10.1111/pcn.12289

Abstract

AIM:

The objectives of this paper are to discuss ethical issues of informed consent in cognitively impaired patients and review considerations for capacity determination. We will also discuss how to evaluate capacity, determine competence, and obtain informed consent when a patient is deemed incompetent. This review emphasizes how to carry out informed consent procedures when capacity is questionable and discusses measures supported for use when determining cognitively impaired patients' ability to consent.

METHODS:

Information was gathered from medical and psychological codes of ethics, peer-reviewed journals, published guidelines from healthcare organizations (e.g., American Medical Association), and scholarly books. Google Scholar and PsycINFO were searched for articles related to "informed consent" and "cognitive impairment" published in English between 1975 and 2014. Relevant sources referenced in retrieved publications were subsequently searched and reviewed.

RESULTS:

We selected 43 sources generated by our search. Sources were included in our review if they presented information related to at least one of our focus areas. These areas included: review of informed consent ethics and procedures, review of cognitive impairment evaluations, recommendations for measuring cognitive capacity, and alternative forms of informed consent.

CONCLUSIONS:

Patients' cognitive impairments can hinder the ability of patients to understand treatment options. Evaluating the capacity of patients with cognitive impairment to understand treatment options is vital for valid informed consent and should be guided by best practices. Thus, proper identification of patients with questionable capacity, capacity evaluation, and determination of competence, as well as reliance upon appropriate alternative consent procedures, are paramount.

The article is here.

Friday, September 12, 2014

Who Can Consent to Neuroscience Research?

By Nick Seaver
blog.bioethics.org
Originally posted on August 20, 2014

Here is an excerpt:

“Generally, a researcher has to obtain a legally effective informed consent of the subject or the subject’s legally authorized representative,” said Menikoff. However, he went on to explain that while the definition does not sound complicated, its implementation can be.

“If you conclude that they did have the capacity and it’s correct, you’re pretty good,” continued Menikoff. “Once you’ve concluded they do not have the capacity, we are now in the area, as you all know, where the rules are very unclear.”

The entire article is here.