Disability and the Decisional Capacity to Vote

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Devan Stahl, PhD

When Voting Rights Are Barred
With upcoming elections only weeks away, many Americans with disabilities will be barred from voting as a result of state competency and guardianship laws.

Eager to cast his vote in the November elections, David Rector has once again had his voting rights denied by a judge in the Superior Court in San Diego, California. In 2011, Rector suffered brain trauma that left him unable to speak or walk. At that time Rector’s fiancée was appointed to be his conservator and a judge ruled his brain injury disqualified him from voting. According to Rector’s fiancée, Rector avidly follows the news and is informed on political issues. Rector cannot speak, but he uses an eye tracking communication device and can read and comprehend.

Rector’s case is another in a long line of cases where persons who can and want to vote have been disenfranchised as a result of a disability. After protests, a complaint filed by the Disability and Abuse Project, and a DOJ investigation, Governor Jerry Brown signed Senate Bill 589, which changed the standard for voting from the person’s ability to fill out a voter registration document to the person’s ability to express a desire to participate in the voting process. The new law went into effect January 1, 2016, and many presumed Rector would have his voting rights restored. On August 29, 2016, Rector met with a judge and used his electronic eye tracking device to declare “I, David Rector, want my voting rights restored immediately.” The judge, however, was not convinced, saying she needed more evidence that Rector wishes to vote. Even with the upcoming presidential election, there is still no plan by elected officials to reinstate voting rights to the approximately 32,000 conservatees who are currently restricted from voting a result of the original law.

The Current Landscape of State Laws

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Image description: Text on a blue background reads “feel the power of the disability vote.” The words “feel the vote” are in white, and the words “the power of disability” are in red. Image source: Flickr Creative Commons.

Rector’s case is hardly an anomaly. Only 11 states do not have some type of law which disqualify persons from voting because they have a mental disability, although most require a court to determine a person does not have the capacity to vote. In many states, however, individuals with guardians or conservators are routinely barred from voting. A study done by a lawyer working for the Disability and Abuse Project found nearly 90% of persons in L.A. County with conservators had been disqualified from voting. In some states, persons with mental disabilities are asked a series of questions to prove they understand the political landscape, such as knowing who the current governor or mayor is or even why they want to vote or how they will vote on particular issues.

Persons with disabilities, like other minority groups, have historically had their right to vote infringed. The Voting Rights Act allows persons who cannot read or write or have any disability to receive assistance from any person of their choice in order to vote and prohibits tests from being used to deny people the right to vote. Provisions of the Americans with Disabilities Act also ensures people with disabilities have the right to vote and reasonable provisions must be in place to allow them to do so. Requiring persons to have the capability of filling out a voter registration form or answer certain political questions amounts to a reinstitution of the literacy test. In many states, persons with disabilities are being disenfranchised.

Supporters of laws that limit persons with guardians or conservators from voting argue such laws limit voter fraud, because persons with disabilities are vulnerable to exploitation by their caregivers who may pressure them to vote a certain way. There is little data to suggest this is happening and the assertion is generally demeaning when applied to all persons with mental disabilities or guardians. Unfortunately, there are still pervasive stereotypes that persons with mental disabilities cannot express preferences or are universally incompetent.

The appointment of a conservator or guardian, and even the declaration of incompetency is not a measure of whether a person has the decision making capacity to vote. Conservatorships and guardianships help ensure persons have their basic needs, including health and safety, met. Persons with a wide range of conditions, including autism spectrum disorder, traumatic brain injury, and cerebral palsy are awarded guardians. Many persons have limited guardianship, which means they have someone, like a family member, help manage financial decisions, but are perfectly capable of voting and expressing political opinions.

Health Care Ethics and Capacity
In health care, it is common to speak of decision making capacity as the capacity to decide on a particular question or treatment. Capacity is never a universal declaration, rather it is an assessment given by a physician as to whether a person as the capacity to decide something in particular. Mental disability or cognitive impairment never automatically disqualify a person from making important medical decisions. Simply because a person does not have the capacity to make one kind of complicated decision does not mean he or she is barred from making other kinds of decisions.

Unfortunately, courts and laws are rarely so nuanced. Physicians, then, have an important obligation to speak up on such issues. Most physicians, particularly ones who work regularly with patients with intellectual and developmental disabilities, know their patients exhibit a wide range of competencies. The bar for the capacity to vote, as outlined in the Voting Rights Act, should be low. No tests ought to be given and no person should be required to answer a series of questions aimed at proving their political knowledge. Only those who are so incapacitated they are unable to express any sort of opinion should be prevented from voting. Persons like David Rector, Roberta Blomster, and Stephen Lopate who express a desire to vote, should never be denied. Just as with health care decisions, the burden should be on physicians or the courts to prove a person does not have the decision making capacity to vote, not on the person with the disability to prove they do. Those who want to vote should be able to vote, and our medical community should both support and fight for their right to do so.

Devan Stahl photoDevan Stahl, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development in the Michigan State University College of Human Medicine.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 6, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Considerations for Minors and Euthanasia Laws

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

While euthanasia has been legal in Belgium since 2002, the government recently began considering changes to existing laws that would guarantee a legal right to die for minors as young as 12 (Blake 2012). This policy change has generated a great deal of controversy, particularly in light of several troubling cases that have recently been made public. No matter what their personal beliefs about euthanasia, bioethicists, health care professionals, those involved in public policy, activists, and all citizens with any vested interest need to carefully examine the ethical implications of various policy changes by asking themselves reflective, critical questions. So, in this blog post, I hope to get readers thinking about the issue by posing four such critical questions that I believe we should consider when analyzing the right to euthanasia for minors.

Question 1: Are minors developmentally capable of making decisions about euthanasia?

There is a general consensus that medical decisions should only be made by competent patients who have the ability to understand the implications of their actions. While scientists once believed that the teenage brain was nearly fully developed, recent evidence suggests that the frontal lobes, the areas of the brain responsible for critical thinking and predicting consequences, are still not connected in the adolescent brain (Knox 2010). The fact that teenagers’ brains are not fully developed may make it difficult for them to accurately understand what life with a significant medical condition entails. They may also have difficulty realizing the gravity and finality of choosing to die. Although no one wants to deny a teenager’s lived experience with her disease, it would be just as unfair to ask her to make decisions she cannot reasonably be expected to make. Thus, we need more information about how teenagers actually make these types of decisions when thinking about the ethics of euthanasia in this population.

Question 2: What effect will this have on families?

Though they are preparing for independent life, teenagers are still integral members of the family unit. Any policy that affects one member of the family unit affects the entire unit. Allowing minors to choose euthanasia fundamentally changes the relationship they have with their parents and the relationship parents have with medical providers. If minors can choose to die when confronted with a serious illness, questions arise about what other decisions they should be allowed to make independently, and these questions force everyone to consider what role the family should play in these minors’ lives. Will families be pressured to choose euthanasia if their child requests it in order to avoid a legal battle? Will parents and other family members still have opportunities to say goodbye to their child in meaningful ways? The medical establishment is inordinately powerful, and it is important to consider how shifting end-of-life decision-making away from families will impact their ability to participate in their children’s care.

Question 3: How will the law be implemented?

Belgium’s euthanasia laws are designed with safeguards to insure only patients who are intractably ill can choose death. Patients requesting euthanasia are supposed to be suffering from extreme, incurable pain and make repeated, informed requests to end their lives in writing. Doctors must provide patients with information about their prognosis and any benefits they might derive from alternative treatments, including palliative care. Physicians are required to keep detailed records and report all instances of euthanasia to a national commission that can cooperate with law enforcement if it appears to have been inappropriate (Cohen-Almagor 2009). But, the law’s implementation has allowed physicians to be primarily independent decision-makers about euthanasia without significant regulatory oversight. Some health care providers believe that Belgium’s euthanasia laws are an important way of addressing such a taboo subject. Others report significant abuse of the law. For instance, in approximately 3% of cases, drugs are administered without the patient’s explicit consent. The lack of consensus about how best to implement euthanasia laws contributes to many ethical concerns about the practice. Any moves to expand the law should only be undertaken after a critical examination of how the current system functions.

Question 4: Given increasing concerns about the way initial euthanasia laws have developed over the past 10 years, what additional safeguards will be in place to protect minors?

Belgium’s euthanasia laws were originally designed only for patients with no hope of recovery. However, several more controversial cases have come to light. Deaf twin brothers were euthanized last year after they found out that they were going blind. The brothers had no terminal medical conditions but reported that they could not imagine life without being able to see each other. The brothers had not yet actually lost their vision and made the decision to die pre-emptively (Ortiz 2013). In another case, a young woman fighting an ongoing battle with anorexia nervosa exercised her right to euthanasia because she no longer wanted to live with intense mental suffering. The woman was sexually abused by her psychiatrist; her next psychiatrist, who verified she was competent to choose euthanasia, was a good friend of the initial doctor who perpetrated the abuse (Cook 2013). Other contentious practices have also become commonplace, including organ harvesting after euthanasia and the extension of euthanasia rights to prisoners serving long-term sentences. With all of these questionable practices, there is considerable concern about vulnerable individuals. Current safeguards appear to be few and far between, and minors could be even more vulnerable than mentally distraught adults. If minors are allowed to make such grave decisions for themselves, bioethicists must ensure that additional safeguards beyond the usual regulatory requirements are in place to prevent unscrupulous, coercive practices.

The preceding questions are only four of the ones we should be asking when evaluating euthanasia policies as applied to minors. Please feel free to contribute more to the discussion. I hope that we can have a rich conversation with one another over the next few weeks!

References

hannah-giunta-100Hannah Giunta is a fourth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Friday, April 12. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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