Deciding for Patients Who Have Lost Decision-Making Capacity — Finding Common Ground in Medical Ethics

Bernard Lo

The New England Journal of Medicine

Originally published 16 Dec 23

Here is an excerpt:

Empirical studies...show that advance directives do not work as was hoped.2 Only a minority of patients complete them. Directives commonly are not well informed, because patients have serious misconceptions about life-sustaining interventions and about their own prognoses. Designated surrogates are often inaccurate in stating patients’ preferences in specific scenarios. Patient preferences commonly change over time. Patients often want surrogates to have leeway to override their prior statements. And when making decisions, surrogates frequently consider aspects of patient well-being to be more important than the patient’s previously stated preferences.

Conceptually, relying completely on an incompetent patient’s prior directives may be unsound. Often surrogates must extrapolate from the patient’s previous directives and statements to a situation that the patient did not foresee. Patients generally underestimate how well they can cope with and adapt to new situations.

So the standard approach shifted to advance care planning, a process for helping adults understand and communicate their values, goals, and preferences regarding future care. Advance care planning improves satisfaction with communication and reduces the risk of post-traumatic stress disorder, depression, or anxiety among surrogate decision makers.3 However, its use neither increases the likelihood that decisions are concordant with patients’ values and goals nor improves patients’ quality of life.3

Studies show that patients are less concerned about specific medical interventions than about clinical outcomes, burdens, and quality of life. Such evidence led advocates of advance care planning to begin focusing on preparing for in-the-moment decisions rather than documenting directives for medical interventions.

Many state legislatures rejected the strict requirements for surrogate decision making that Cruzan allowed. By 2004, 10 states allowed patients to appoint a health care proxy in a conversation with a physician as well as in formal documents. By 2016, 41 states — both conservative and liberal — had enacted laws allowing family members to act as health care surrogates for patients who lacked decision-making capacity and had not designated a health care proxy. Seven states included domestic partners or close friends on the list of acceptable surrogates.

The info is here.

Here is a quick summary:

Following the 1990 Supreme Court's Cruzan ruling, which emphasized clear evidence for life-sustaining treatment withdrawal, practices shifted. Advance directives like living wills gained popularity, but studies revealed their limitations. Advance care planning, focusing on communication and values, took hold. POLST forms were introduced for specific interventions, but studies show inconsistency with actual situations.

The emphasis is now on family decision-making and flexible guidelines. Rigid legal formalities have decreased, and surrogates consider not just past directives but also current situations and evolving values. Discussions involving patients, surrogates, and physicians are crucial. Different approaches like past commitments, current well-being, and "life story continuation" may be appropriate depending on the context.

The Cruzan framework is no longer the basis for medical ethics and law. Family decisions, flexible standards, and evolving values now guide care. This shift showcases how medical ethics can adapt through discussions, research, and legal changes. Finding common ground on critical issues in today's divided society remains a challenge, but it's more important than ever.

How our lives end must no longer be a taboo subject

Kathryn Mannix
The Guardian
Originally published August 16, 2018

Here is an excerpt:

As we age and develop long-term health conditions, our chances of becoming suddenly ill rise; prospects for successful resuscitation fall; our youthful assumptions about length of life may be challenged; and our quality of life becomes increasingly more important to us than its length. The number of people over the age of 85 will double in the next 25 years, and dementia is already the biggest cause of death in this age group. What discussions do we need to have, and to repeat at sensible intervals, to ensure that our values and preferences are understood by the people who may be asked about them?

Our families need to know our answers to such questions as: how much treatment is too much or not enough? Do we see artificial hydration and nutrition as “treatment” or as basic care? Is life at any cost or quality of life more important to us? And what gives us quality of life? A 30-year-old attorney may not understand that being able to hear birdsong, or enjoy ice-cream, or follow the racing results, is more important to a family’s 85-year-old relative than being able to walk or shop. When we are approaching death, what important things should our carers know about us?

The info is here.

‘My death is not my own’: the limits of legal euthanasia

Henk Blanken
The Guardian
Originally posted August 10, 2018

Here is an excerpt:

Of the 10,000 Dutch patients with dementia who die each year, roughly half of them will have had an advance euthanasia directive. They believed a doctor would “help” them. After all, this was permitted by law, and it was their express wish. Their naive confidence is shared by four out of 10 Dutch adults, who are convinced that a doctor is bound by an advance directive. In fact, doctors are not obliged to do anything. Euthanasia may be legal, but it is not a right.

As doctors have a monopoly on merciful killing, their ethical standard, and not the law, ultimately determines whether a man like Joop can die. An advance directive is just one factor, among many, that a doctor will consider when deciding on a euthanasia case. And even though the law says it’s legal, almost no doctors are willing to perform euthanasia on patients with severe dementia, since such patients are no longer mentally capable of making a “well-considered request” to die.

This is the catch-22. If your dementia is at such an early stage that you are mentally fit enough to decide that you want to die, then it is probably “too early” to want to die. You still have good years left. And yet, by the time your dementia has deteriorated to the point at which you wished (when your mind was intact) to die, you will no longer be allowed to die, as you are not mentally fit to make that decision. It is now “too late” to die.

The info is here.

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.

Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Deirdre Fetherstonhaugh, Linda McAuliffe, Michael Bauer, Chris Shanley
J Med Ethics
doi:10.1136/medethics-2015-103301

Abstract

Background
For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.

Methods
Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data.

Results
Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity.

Discussion
Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.

The article is here.

Are doctors who know the law more likely to follow it?

By Ben White and Lindy Willmott
BMJ Blogs
Originally posted August 17, 2016

Here is an excerpt:

Compliance with the law was low with only 32% of doctors following the advance directive. Of interest was that doctors who knew the relevant law were more likely to comply with it and follow the advance directive than those doctors who did not know the law. Initially we thought that this could indicate that legal knowledge might lead to legal compliance. However, we then examined the reasons doctors gave for decision-making and also the factors they relied on to understand whether law was seen as important or not by doctors in their deliberations.

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So legally knowledgeable doctors are more likely to comply with the law – but law does not seem to be shaping decision-making in this area. This presented a puzzle to us. What else could be responsible for the association between doctors’ legal knowledge and compliance? More work is needed to fully understand what is happening here but we suggest that ethical considerations are a likely candidate. Both law and autonomy-focused ethics point to following the advance directive hence a decision motivated by this ethical orientation would also comply with the law. And medical ethics and law are also often taught together in an integrated way and so more legally-informed specialists are likely to have had more instruction in ethics too.

The blog post is here.

Is It Immoral for Me to Dictate an Accelerated Death for My Future Demented Self?

By Norman L. Cantor
Harvard Law Blog
Originally posted December 2, 2015

I am obsessed with avoiding severe dementia. As a person who has always valued intellectual function, the prospect of lingering in a dysfunctional cognitive state is distasteful — an intolerable indignity. For me, such mental debilitation soils the remembrances to be left with my survivors and undermines the life narrative as a vibrant, thinking, and articulate figure that I assiduously cultivated. (Burdening others is also a distasteful prospect, but it is the vision of intolerable indignity that drives my planning of how to respond to a diagnosis of progressive dementia such as Alzheimers).

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I suggest that while a demented persona no longer recalls the values underlying the AD and cannot now be offended by breaches of value-based instructions, those considered instructions are still worthy of respect. As noted, the well established mechanism — an AD – is intended to enable a person to govern the medical handling of their future demented self. And the values and principles underlying advance instructions can certainly include factors beyond the patient’s contemporaneous well being.

The entire blog post is here.

Physicians and Euthanasia: What about Psychiatric Illness, Dementia and Weltschmerz?

By Eva Bolt
BMJ Blogs
Originally posted on February 18, 2015

Here is an excerpt:

Concluding, while most Dutch physicians can conceive of granting requests for euthanasia from patients suffering from cancer or other severe physical diseases, this is not the case in patients suffering from psychiatric disease, dementia or being tired of living. This distinction is partly related to the criteria for due care. For instance, some physicians describe that it is impossible to determine the presence of unbearable suffering in a patient with advanced dementia. Other explanations for the distinction are not related to the criteria for due care. For instance, it is understandable that physicians do not agree with performing euthanasia in a patient with advanced dementia who does not fully understand what is happening, even if the patient has a clear advanced euthanasia directive.

The entire article is here.

The article in the Journal of Medical Ethics is here.

Which Doctors Should ‘Own’ End-of-Life Planning?

By Randi Belisomo
Medscsape
February 12, 2015

The duty to guide patients through the end-of-life decision-making process rests squarely on primary care providers, writes one internist in The New England Journal of Medicine in a February 11 online article, maintaining that her colleagues should better support seriously ill patients earlier and throughout the course of disease.

Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health and Science University, is one of three physicians responding to the NEJM's most recent "Clinical Decisions" case feature, detailing a woman undergoing treatment for metastatic breast cancer. However, her advance directive has not been reviewed in close to a decade.

The entire article is here.

Medicare considers funding end-of-life talks

By Pam Belluck
The New York Times
Originally published August 31, 2014

Five years after it exploded into a political conflagration over “death panels,” the issue of paying doctors to talk to patients about end-of-life care is making a comeback, and such sessions may be covered for the 50 million Americans on Medicare as early as next year.

Bypassing the political process, private insurers have begun reimbursing doctors for these “advance care planning” conversations as interest in them rises along with the number of aging Americans.

The entire article is here.

Editorial note: Politics will continue to affect health care delivery in the United States.  It is critical that healthcare providers cite foundational ethical principles when advocating for changes in our healthcare system, and not become immersed in sloganeering or bumper sticker politics to support one political party or the other.  High quality health care and informed patient choice are paramount.

Why Are Americans Scared to Talk About Dying?

The number of people with legal documents detailing how they want to die remains low, suggesting talk of death is still largely taboo.

By Marina Koren
The National Journal
Originally posted December 10, 2013

Imagine you're brain-dead. There was an accident, and your loved ones have gathered at your hospital bed to hear the doctors say there's not much else they can do. What would you want to happen?

It's a scenario that's as terrifying as it is unpredictable. The thought of it pushes some people to iron out end-of-life decisions long before it's too late, some when they're still healthy. They sign advance directives, legal documents, which include living wills and do-not-resuscitate orders, that outline what families and doctors can and can't do when people become patients.

In the United States, dying inside a hospital rather than at home may be more realistic than we'd care to admit. Still, many Americans tend to avoid talking about their own end-of-life wishes, according to new research published Tuesday in the American Journal of Preventive Medicine. Of 7,946 people polled in a national health survey, just 26 percent had completed an advance directive.

The entire article is here.

Hiring an End-of-Life Enforcer

By Paula Span
The New York Times - The New Old Age
Originally published October 24, 2013

The chilling dilemma of “the unbefriended elderly,” who don’t have family or close friends to make medical decisions on their behalf if they can’t speak for themselves, generated a bunch of ideas the last time we discussed it.

One reader, Elizabeth from Los Angeles, commented that as an only child who had no children, she wished she could hire someone to take on this daunting but crucial responsibility.

“I would much rather pay a professional, whom I get to know and who knows me, to make the decisions,” she wrote. “That way it is an objective decision-maker based on the priorities I have discussed with him/her before my incapacitation.”

The entire article is here.

When There’s No Family

By PAULA SPAN
The New York Times
Originally published September 23, 2013

I rarely write about advance directives and end-of-life discussions without a few readers asking, sometimes plaintively: What if you don’t have a family?

“The presumption is that everyone has someone available, someone most likely younger or in better health, and better able to carry out one’s wishes or make decisions with your guidance,” Cheryl from Westchester commented the last time the subject arose.

But not everyone does.

The entire story is here.