From autonomy to guardianship: Policy reviews medical decision-making options

by Dennis Z. Kuo, M.D., M.H.S., FAAP, and Renee M. Turchi, M.D., M.P.H., FAAP 

When youth with intellectual and/or developmental disabilities (IDD) reach the age of majority (typically age 18), they may need support in making medical decisions.

The process of pursuing alternative decision-making supports, including guardianship, is stressful for youth and caregivers.

The new AAP policy statement Considerations for Alternative Decision Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities provides guidance for pediatricians to support conversations with youth and their caregivers.

Pediatricians are encouraged to uphold human rights and human dignity for youth with IDD. These youth have the right to be recognized as persons before the law and to enjoy legal capacity in all aspects of life on an equal basis with individuals without disabilities, according to the United Nations Convention on the Rights of Persons with Disabilities.

The policy, from the Council on Children with Disabilities and the Committee on Medical Liability and Practice Management, is available at https://doi.org/10.1542/peds.2024-066841 and will be published in the June issue of Pediatrics.

Continuum of support

Approximately one in six children (17%) between the ages of 3 and 17 years has a developmental disability (Zablotsky B, et al. Pediatrics. 2019;144:e2019081).

When these youth reach the age of majority, their ability to make health care decisions falls on a continuum from being fully autonomous to needing guardianship (legally recognized, fully substituted decision-making). In addition, states may recognize levels of supported decision-making in between these two extremes for individuals who are not fully incompetent but need assistance to make some decisions.

Youth are presumed to have the capacity to make decisions until proven otherwise, and balancing autonomy with appropriate supports is paramount. Pediatricians are encouraged to be familiar with local resources supporting youth with IDD and their autonomy, which may vary substantially by state (http://www.supporteddecisionmaking.org/).

Individuals with IDD who use supported decision-making report increased confidence in themselves and their decision-making, improved decision-making skills, increased engagement with their community and more control of their lives.

Support teams (including the youth, caregivers, teachers and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth’s capacity for independent decision-making.

If fully autonomous decision-making is not considered appropriate at the age of majority, the pediatrician is encouraged to raise consideration of alternative decision-making supports early enough to allow the youth and caregiver to consider different levels of supports available to them. The goal should be the least restrictive alternative, while preserving the youth’s human rights and human dignity and promoting autonomy.

The policy statement describes terms, concepts and legal requirements to help families navigate health care transition for youth with IDD. Such concepts include:

• supported decision-making, e.g., choosing a trusted person to attend medical appointments and talk through treatment options;
• other less restrictive alternatives, e.g., allowing a caregiver to access the youth’s medical record;
• health care power of attorney, a legal document that gives someone the right to make health care decisions for someone else in specified circumstances; and
• guardianship, a legal process that is the most-restrictive option when the youth is deemed unable to make decisions.

Key recommendations

• Preservation of human rights and human dignity for all youth is essential while promoting patients’ autonomy.
• Pediatricians should advocate for the least restrictive decision-making environment for their patients.
• Pediatricians can promote and support the developing autonomy of all patients by engaging them in conversations about care decisions while accounting for the youth’s intellectual or developmental ability to express preferences and understand decisions about different aspects of their care.
• Pediatricians can be aware of different levels of decision-making support for youth and partner with care teams, legal advocates, families and youth in determining the right types of support needed. They also can be familiar with local and state resources supporting disability and autonomy for youth with IDD, including medical-legal partnerships, and refer when appropriate.

Dr. Kuo and Dr. Turchi are lead authors of the policy statement and members of the AAP Council on Children with Disabilities.

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From autonomy to guardianship: Policy reviews medical decision-making options

More clarity now available on making medical decisions for incapacitated patients

Rachel N. Jordan, an attorney

More clarity available on making medical decisions for the incapacitated

Q: How has the law on making medical decisions for incapacitated patients changed?

A: When a patient is incapacitated and unable to provide informed consent, health care providers in the past have faced a great deal of uncertainty regarding who could make medical decisions on behalf of the patient. This particularly has been an issue when a patient hasn't designated a legal representative and the family members disagree on the best course of action. However, the Oklahoma Legislature recently passed legislation that provides hospitals and other health care providers with clear guidance on what to do in these situations. While not specifically covered, the new law appears to permit individuals who fit specific criteria to make decisions regarding affirmative health care treatment (such as authorizing surgery), as well as decisions to terminate treatment, including life-sustaining treatment (such as discontinuation of a ventilator).

Q: Who now can make decisions on behalf of incapacitated patients?

A: The new law states that when an adult patient is unable to provide consent due to the fact that he or she is persistently unconscious, incompetent or mentally or physically incapable of communicating, another individual that's available and willing may make health care decisions for the patient in the following order of priority: legally appointed guardian, health care proxy designated by the patient, attorney-in-fact with health care decision authority, spouse, adult child, parents, adult sibling, and other adult relative in order of kinship. If members of a class disagree (e.g., the patient has three children, and two consent and one doesn't), a majority within the class may decide. If the patient hasn't designated a legal representative, and no family members are available and willing to act on the patient's behalf, a close friend may provide the requisite consent if he or she signs an affidavit stating that he or she has maintained regular contact with the patient and is familiar with the patient's personal values. The affidavit should include specific facts and circumstances that document such contact. Finally, certain persons charged with and/or convicted of certain crimes or offenses (such as physical or verbal abuse or exploitation) are disqualified from acting on behalf of an incapacitated patient.

Q: What happens if the decision maker doesn't know the incapacitated person's wishes?

A: An individual making health care decisions pursuant to this statute must do so based on the known intentions, personal views and best interests of the patient. If there's sufficient evidence of the patient's wishes, those wishes must control. If there isn't sufficient evidence of the patient's wishes, the decisions must be based on the reasonable judgment of the individual deciding. In the event that either a provider or member of another class believes this standard has been violated, he or she may petition the court for a different health care decision.

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More clarity now available on making medical decisions for incapacitated patients

Elderly patients rarely included in decision to use intensive care

According to a study of 15 emergency departments, patients over age 80 who are admitted to intensive care are often not asked their opinion about admission.

“The relationship between physicians and their patients has changed over the last decades and patients’ empowerment has led to a greater self autonomy in medical decisions,” but apparently not when it comes to moving elderly patients into an intensive care unit, said lead author Dr. Julien Le Guen of Universite Paris Descartes in France.

Legally, no medical decision should be made without the patient’s consent, Le Guen told Reuters Health by email. But based on the results of his team’s study, there seems to be a discrepancy between what doctors say is important, like the patient’s opinion, and what they actually do.

The researchers used data from a previous study of patients over age 80 who came to emergency rooms at 15 hospitals in the Paris region between 2004 and 2006. All had conditions potentially requiring intensive care, and all were conscious and capable of expressing an opinion if asked.

The emergency room physicians filled out a questionnaire on each patient’s status and treatments, the number of available intensive care beds, the physician’s years of experience, and whether or not relatives were consulted.

They also indicated if they sought the opinion of the patient or relatives regarding referral to the intensive care unit (ICU) and if so what their opinions were.

More than 2,000 patients were included in the study and only 270 were asked for their opinion, ranging by medical center from 1 percent of the time to 54 percent of the time.

Patients with a history of dementia were less often asked, and those with more functional autonomy or a relative who had been questioned were more often asked.

Older ER doctors were less likely than younger doctors to ask a patient’s opinion, the researchers reported in the journal Age and Ageing.

“Intensive care techniques in these extreme ages of life raise the question of an artificial prolongation of life and can be perceived by some as therapeutic relentlessness,” Le Guen said.

“Therapeutics used in the ICU are uncomfortable,” he said. And for the oldest old, he added, rates of death in the ICU, in the hospital, and afterward are high, “and survivors frequently face a loss of autonomy in the following months.”

Individual wishes can be hard to predict for the very old, he said.

An elderly person may not want aggressive treatment like intensive care, use of ventilators or feeding tubes, said Dr. Walter E. Limehouse of the Medical University of South Carolina.

When patients arriving in the emergency room lack the ability to make decisions, U.S. emergency physicians are increasingly asking whether they have an advance directive or treatment plan, Limehouse told Reuters Health by email.

“ICU admission policies and process are different between countries,” Le Guen said. “In France, the final decision is always under the intensivist’s responsibility, normally after a global evaluation taking into account patient wishes.”

A history of dementia does not always mean a patient can’t express an opinion, Le Guen said.

“In my opinion, patients suffering from dementia should always be asked, and physicians should always try to receive consent when a medical decision has to be made for these patients, even if a full understanding seems illusory,” he said.

SOURCE: bit.ly/20qXMpU Age and Ageing, online January 11, 2016.

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Elderly patients rarely included in decision to use intensive care

Opinion: Love & Mercy, the Croatian Way

Marica

NEW YORK, Jul 6 2015 (IPS) - Last week, I went to see the new flick “Love & Mercy,” about the life of Brian Wilson, a singer, songwriter, and the genius behind The Beach Boys. I hadn’t heard much about the film. In fact, I was expecting a summer movie about surfing and fun; The Beach Boys playing Kokomo, Good Vibrations, and Surfin’ U.S.A. on sunny California  beaches.

I was wrong. Instead, lives of hundreds of people I’ve met unfolded on the screen.

Love & Mercy depicts Wilson in two narratives: in the first, he is portrayed at the height of his fame as the leader of The Beach Boys in the 1960s. The second features a middle-aged Wilson misdiagnosed with paranoid schizophrenia by Eugene Landy, Wilson’s therapist and legal guardian.

In the movie, Landy keeps Wilson heavily medicated as he controls every aspect of his life, including his finances, residence, family relationships and social interactions, and other basic life decisions. In one scene, Wilson talks about not speaking to his mother and daughters for years because Landy “doesn’t think it is a good idea.”

In another, Landy tells Wilson when and how much he should eat and whom he should date. Landy himself explains his influence:  “I’m the control. He is a little boy in a man’s body… It is my job, my duty to approve everyone Brian is spending time with.”

Wilson did not argue against Landy taking charge for fear that Landy would have him committed to an institution. As Wilson explains in the movie: “I can’t do that [disobey Landy]. He is my legal guardian. He can do things to me… He can send me away… There’s no way out.”

As the movie unfolded, it wasn’t solely Wilson’s story that I saw on the screen. I was reminded of Tatjana and Ivan, whom I met in Croatia. They are among the 18,000 people with disabilities placed under guardianship there and denied their right to make decisions about their lives.

More than 90 percent live under full guardianship, under which the guardians – often nominated by the government – make all life decisions for them.

Tatjana was diagnosed with schizophrenia in her early 30s, deprived of her legal capacity and placed under guardianship. She is now 47 but can’t visit her daughter or her mother without the permission of her guardian – in her case, a social worker.

It is the same if she wants to move to another house, get married, sign an employment contract, make health care decisions, or even officially publish her poems. Tatjana lived for nine years in an institution against her will because her legal guardian placed her there.

Ivan is 30 and was diagnosed with mild mental health problems. He was just 16 when he was placed indefinitely in Lopaca, a psychiatric hospital where 168 people, including 20 children, are confined. He still lives there.

Ivan and Tatjana told me that they did not consent to their confinement to an institution. They were, in fact, never asked about their preferences, wishes and wants. Both of them were stripped of their right to make decisions about their lives and appointed legal guardians.

Neither Tatjana nor Ivan was present during the court proceedings determining their legal capacity so they could  provide their input for this major decision about their life.  While guardians are supposed to only oversee decisions with legal consequences, such as signing contracts, in Croatia – just like what was depicted in Love & Mercy –guardians can monitor and control every move a person makes.

I saw firsthand that people with disabilities trapped in institutions in Croatia can experience a range of abuses including verbal abuse, forced treatment, involuntary confinement in hospitals, and limited freedom of movement.

At a pivotal point in the movie, Landy forbids Wilson and Melinda Ledbetter, his current wife, from seeing each other. That triggers Ledbetter, the true heroine of the movie, to intensify her efforts to free Wilson from Landy’s control. She learns that Wilson’s will would have awarded the vast majority of his wealth to Landy. The good news: Wilson’s family files a lawsuit successfully challenging the guardianship.

Sadly, there are no heroines to free Tatjana or Ivan of their guardians. There is a chance of a happy ending though. Croatia, unlike the U.S., has ratified the U.N. Disability Rights Treaty, which requires governments to move away from guardianship and instead provide a system of assistance and support for decision-making that respects the autonomy, will, and preferences of the person with the disability. Croatian laws, however, don’t reflect this.

Key policymakers in the Croatian government should see “Love & Mercy.” Maybe then they will abolish Croatia’s guardianship regime and provide a wide range of support measures. Who knew that The Beach Boys’ influence could go so far beyond their music?

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Opinion: Love & Mercy, the Croatian Way