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.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Ethics and Children with Differences in Sex Development and Gender Nonconformity

green brownbag/webinar iconEvent Flyer

Society once considered children born with atypical genital anatomy to be freaks of nature. Until recently, doctors labeled these children “hermaphrodites” and urged early appearance-altering surgery. While times have changed, somewhat, medical interventions continue despite mounting evidence of long-term harms associated with both medical and surgical “treatment.” In the last few years, family, public, and medical attention has increasingly focused on children who feel trapped in the body of the “opposite” sex and wish to live as the other gender. Controversy continues about how often these feelings persist into adulthood and when to use medical interventions, such as hormone blocking to prevent full pubertal development, to support the gender nonconformity. When should society constrain clinicians from intervening in these contentious arenas?

sept 28 calendar iconJoin us for Joel E. Frader’s lecture on Wednesday, September 28, 2016 from noon till 1 pm in person or online.

Joel E. Frader, MD, MA, is the A Todd Davis Professor of General Academic Pediatrics and Professor of Bioethics and Medical Humanities at Northwestern University’s Feinberg School of Medicine. He is the Medical Director of the Pediatric Palliative Care Program at Lurie Children’s Hospital in Chicago. He received a B.A. from Columbia University (1970), a M.D. from Tufts (1974), and a M.A. in Sociology from the University of Pennsylvania (1980) where he was a Robert Wood Johnson Clinical Scholar. He is active in and served in leadership positions for national organizations concerned with pediatrics and bioethics. He teaches, consults and conducts research in bioethics and palliative care, focusing on ethical issues involving children in the health care system and innovation in health care. He has special interest in ethics in organ transplantation, children with differences in sexual development (intersex) and gender nonconformity, decision making at the end of life, and the ethics of human subjects research.

In person: This lecture will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

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Announcing the Fall 2016 Bioethics Brownbag & Webinar Series

bbag-iconThe Center for Ethics and Humanities in the Life Sciences at Michigan State University is proud to announce the 2016-2017 Bioethics Brownbag & Webinar Series, featuring a wide variety of topics from under the bioethics umbrella. The fall series will begin on September 28, 2016, and you can attend the lecture in person or watch live online. Information about the fall series is listed below, and you can visit our website for more details, including the full description and speaker bio for each event.

Fall 2016 Series Flyer

sept28-bbagEthics and Children with Differences in Sex Development and Gender Nonconformity
When should society constrain clinicians from intervening in these contentious arenas?
Wednesday, September 28, 2016
Joel E. Frader, MD, MA, is a Professor of Pediatrics and Professor of Bioethics and Medical Humanities at Northwestern University, and Medical Director of Bridges Pediatric Palliative Care Program at Lurie Children’s Hospital of Chicago.

oct19-bbagChoosing to Test: Dr. A. P. Satterthwaite and the First Birth Control Pill Clinical Trials in Humacao, Puerto Rico
How did Adaline Pendleton Satterthwaite, an obstetrician-gynecologist (OB-GYN) working at a Protestant mission hospital in Puerto Rico, become one of the key architects of the first birth control pill?
Wednesday, October 19, 2016
Kathryn Lankford is a Doctoral Student in the Department of History at Michigan State University.

nov9-bbagTrust and the Learning Health System
What will it take to trust the health system with all that information?
Wednesday, November 9, 2016
Jodyn Platt, MPH, PhD, is an Assistant Professor in the Division of Learning and Knowledge Systems in the Department of Learning Health Sciences at the University of Michigan Medical School.

In person: These lectures will take place in C102 (Patenge Room) East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? Every lecture is recorded and posted for viewing in our archive. If you’d like to receive a reminder before each lecture, please subscribe to our mailing list.

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To Floss or Not to Floss? That’s not the question

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

By Robyn Bluhm, PhD

Should we stop flossing?
Earlier this month, the Associated Press published a report showing that the evidence in support of flossing is “‘weak, very unreliable,’ of ‘very low’ quality, and carries ‘a moderate to large potential for bias.’” So, should we stop flossing? The American Dental Association says no: “interdental cleaners such as floss are an essential part of taking care of your teeth and gums.”

The AP report and the ADA’s response illustrate interesting questions about evidence-based medicine (EBM), an approach to medical decision-making that has become central to medicine since its introduction in the early 1990s. EBM is often defined as “the conscientious explicit and judicious use of current best evidence in making decisions about the care of individual patients.” The “current best evidence” referred to in this definition is (at least in the case of studies examining treatments) supplied by well-designed randomized controlled trials (RCTs). Although RCTs have been conducted to investigate the effectiveness of flossing, the quality of the studies – and therefore of the evidence they provide – has been poor; this much the AP report and the ADA agree on.

What counts as good evidence? The ADA and EBM
In their response to the report, the ADA appeals to other sources of evidence, ones that EBM considers inferior to RCTs. EBM provides a hierarchy of evidence that ranks research methods according to the quality of evidence they are expected to generate (see, for example, Guyatt et al. 2014, p. 11). At the top of the hierarchy are RCTs, followed by controlled trials that are not randomized. These studies use epidemiological methods to assess treatment outcomes in large groups of patients. Below these study designs comes (1) evidence from physiological research that aims to elucidate the details of biological processes, including the effects of an intervention, and (2) evidence from clinicians’ unsystematic clinical experience, described, for example, in case reports. According to EBM, the first of these lower sources of evidence is problematic because knowledge of physiology does not accurately predict clinical outcomes, while the second source is too limited and small in scale to give generalizable information.

dental floss embroidered in green

Image description: a dental floss package has been embroidered with green thread onto a plain piece of fabric. Image source: Flickr Creative Commons

In fact, the ADA’s response to the report on flossing appeals to both of these “lower” forms of evidence. They begin with an appeal to clinical experience, saying that “As doctors of oral hygiene, dentists are in the best position to advise their patients on oral hygiene practices because they know their patient’s oral health status and history.” The report later endorses the traditional rationale for flossing, which is exactly the kind of physiological reasoning criticized by EBM: “Cleaning between the teeth removes plaque that can lead to cavities or gum disease from the areas where a toothbrush can’t reach. Interdental cleaning is proven to help remove debris between teeth that can contribute to plaque buildup.”

Is the ADA ignoring EBM’s recommended approach to evidence? Not necessarily. Early accounts of EBM seem to recommend strict adherence to the hierarchy of evidence, advising clinicians that “they should look for the highest available evidence from the hierarchy” (Guyatt et al., 2002, p. 8). More recently, this advice has changed to “they should seek the highest-quality evidence available” (Guyatt et al., 2014, p. 11). The problem is that, in the absence of the “best” evidence, well-conducted RCTs, EBM does not provide clear guidance as to how to assess – and act on – the evidence that’s actually available.

What EBM misses…
Despite all of these problems with assessing the evidence, the ADA says that we should just keep flossing. For that matter, (poor evidence alert!) everyone I’ve told about this blog post has said that they don’t plan to stop. And it’s here that a dimension of evidence becomes apparent that is missing in EBM, but is central to bioethics: in deciding whether to use a treatment, we need to consider the balance of benefits and harms. We also need to set our standards of evidence accordingly. Flossing is unlikely to be harmful, and (despite the lack of evidence) may have significant benefits. It is also easy to do and inexpensive, both factors that count on the “benefits” side of the scale. We could try to acquire better evidence to support the ADA’s recommendations, but given how unlikely it is that flossing is actually harmful, we already have enough evidence to justify flossing.

…and why it matters
I suggest that the best way to understand the recent discussion over the evidence for flossing is not as an invitation to rethink our oral hygiene practices, but as an invitation to think more broadly about what kind of evidence, and how much, we should require before we change our health care practices – whether to begin to use a new therapy or to stop using an old one. The “low stakes” in this case may help to illuminate the issues and give us a simple case from which we can begin to think about more complicated questions about values and evidence. And there are plenty of these complicated questions, many of which have also appeared in recent media stories. Consider:

My first response to each of these stories is that I’d want better evidence than I would in the flossing case, in each case because the stakes are higher – both the risks and the potential benefits are greater. But I suspect that there’s no straightforward way to set evidentiary standards based on possible benefits and harms in these cases. I’d welcome readers’ comments on how we might think about the evidence required to decide about these and other complicated cases!

robyn-bluhm-photoRobyn Bluhm, PhD, is an Associate Professor in the Department of Philosophy and Lyman Briggs College at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 8, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Click through to view references

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New publication from Dr. Fleck in ‘Cambridge Quarterly of Healthcare Ethics’

Leonard Fleck photoAn article from Center Professor Dr. Leonard Fleck was published in the July 2016 issue of Cambridge Quarterly of Healthcare Ethics, “a quarterly journal devoted to engaging a world community of bioethicists.” Dr. Fleck’s article, “Choosing Wisely: Is Parsimonious Care Just Rationing?” accesses claims related to the practices of rationing and parsimonious care.

Abstract: The American College of Physicians in its ethics manual endorsed the idea that physicians ought to improve their ability to provide care to their patients more parsimoniously. This elicited a critical backlash; critics essentially claimed that what was being endorsed was a renamed form of rationing. In a recent article, Tilburt and Cassel argued that parsimonious care and rationing are ethically distinct practices. In this essay I critically assess that claim. I argue that in practice there is considerable overlap between what they term parsimonious care and what they define as rationing. The same is true of the Choosing Wisely campaign endorsed by the American Board of Internal Medicine. In both cases, if the goal is to control healthcare costs by reducing the use of marginally beneficial care that is not cost effective, then a public conversation about the justness of specific choices is essential.

To read Dr. Fleck’s article in full, please visit the Cambridge Quarterly website.

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Dr. Stahl presents at International Academy for Bioethical Inquiry Summer Symposium

stahl-crop-2015Center Assistant Professor Dr. Devan Stahl recently presented at the International Academy for Bioethical Inquiry (IABI) Summer Symposium, held August 8-10 at Saint Louis University’s Albert Gnaegi Center for Health Care Ethics.

Dr. Stahl presented the paper “The Fate of Disabled Bodies in a Posthuman Future.” Her presentation explored themes of disability, Christianity, and transhumanism.

Please visit our website to learn more about Dr. Stahl’s work.

 

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Dr. Cabrera published in ‘Sociological Methods & Research’

cabrera-crop-2015Center Assistant Professor Dr. Laura Cabrera was recently published in the journal Sociological Methods & Research. The article, “A Novel Sequential Mixed-method Technique for Contrastive Analysis of Unscripted Qualitative Data: Contrastive Quantitized Content Analysis,” was co-authored by Dr. Cabrera and Peter B. Reiner of the National Core for Neuroethics at University of British Columbia. The article was published online ahead of print on August 4, 2016.

Abstract: Between-subject design surveys are a powerful means of gauging public opinion, but critics rightly charge that closed-ended questions only provide slices of insight into issues that are considerably more complex. Qualitative research enables richer accounts but inevitably includes coder bias and subjective interpretations. To mitigate these issues, we have developed a sequential mixed-methods approach in which content analysis is quantitized and then compared in a contrastive fashion to provide data that capitalize upon the features of qualitative research while reducing the impact of coder bias in analysis of the data. This article describes the method and demonstrates the advantages of the technique by providing an example of insights into public attitudes that have not been revealed using other methods.

The full text is available on the Sociological Methods & Research website (note: institutional access, such as access through Michigan State University Libraries, may be required to view the full text).

Dr. Cabrera is a faculty affiliate in the National Core for Neuroethics at University of British Columbia.

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