The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.” Read More

The Right of the Child against Compulsory Religious Belonging

The recent bill in Iceland that would make nonmedical infant circumcision for boys a crime reminds me once again how international human rights standards are still ambiguous with regard to balancing the right of the child with the right of the religious parent. The bill, already sponsored by at least a quarter of Iceland’s doctors and more than 1000 nurses and midwives, inevitably met with criticism from religious groups that practice male circumcision. The drafters of the bill denied the suspicion that the legislation is an attack on religious freedom, citing health reasons as its primary motivation. Unsurprisingly, the controversy is framed in terms of whether certain public health mandates for children should trump the religious freedom of parents not to conform to these mandates. In Iceland, the issue is magnified by the extremely small Jewish and Muslim populations in the country – adding charges of xenophobia to the controversy. In this blog post, I will not focus on recounting the history of the debate of male circumcision and international law, but to articulate my general frustration with a discourse like this that takes the right of religious parents to impose religious memberships and beliefs onto their biological children for granted. Why is it so rarely discussed, that the child born into a religious household may have a form of agency not yet recognized by our current legal and ethical discourse? Why should we grant parents the benefit of the doubt that they have “the best interest of their child” in mind when acting as proxies in medical and health matters?

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Forced Christian Arbitration Agreements Trivialize Health Care

It is no secret that more and more for-profit companies and non-profit organizations are using binding religious arbitration agreements as a means to bypass legal liability. It has been reported that entities that have little or no religious purpose, such as bamboo floor vendors and vocation cabin rental agencies, have quietly inserted binding arbitration clauses into everyday agreements. In the event of a dispute the consumers or victims cannot take these entities to a secular court, but rather to a religious tribunal that claims to be capable of settling any dispute using their interpretations of the Bible. A common reaction against these questionable practices follows this line of critique: shouldn’t religious arbitration, if tolerated at all, only be used for disputes concerning religious or spiritual matters on which the secular courts cannot adjudicate? What does buying bamboo floors or renting a vocation cabin have anything to do with Christian doctrines?

Unfortunately, these questions cannot adequately challenge the religious reasoning behind Christian arbitration agreements. This is due to the counter-intuitive fact that, according to relevant biblical texts, disputes settled in a so-called Christian arbitration tend not to be about important spiritual matters, but trivial matters instead. Here is the text pertaining to lawsuits among Christian believers:

“When one of you has a grievance against a brother, does he dare go to law before the unrighteous instead of the saints? Do you not know that the saints will judge the world? And if the world is to be judged by you, are you incompetent to try trivial cases? Do you not know that we are to judge angels? How much more, matters pertaining to this life! 4    (1 Corinthians 6: 1-4)

At first look, these verses seem to make a strong case for Christian arbitrations. However, upon a closer look, it could be argued that Christians can still settle disputes with others in court under certain circumstances. Verse 1 suggests that Christians shouldn’t “dare to go to law before the unrighteous instead of the saints,” but it only excludes the court system if we assume that the judges at the civil courts are all “unrighteous sinners”. What if they’re not? What if some judges turn out to be devout Christians in private or possess “righteous” and “saintly” qualities? The remaining verses all point to the scope of judging powers the believers are entitled to, since they are to judge the entire world and even angels. Nonetheless, the structure of these rhetorical questions is meant to convince the believers that because they are qualified to judge angels, trivial earthly matters should be a piece of a cake. Since the disputes between Christians are not at all about angels or the whole world, these lines essentially imply that the matters that fall under the purview of Christian arbitrations are precisely trivial matters pertaining to this life on earth, not complicated spiritual affairs. Read More

“Ex-Gay” Speaker, Attempted Suicide, and HCSMs

On February 16, Jackie Hill-Perry, an outspoken speaker against homosexuality, delivered a controversial, unapologetically homophobic speech at Harvard’s Emerson Hall. Harvard College Faith and Action, the religious student group that invited Hill-Perry, reserved all the center-front seats for attendees “engaged in protest,” who were “welcomed” to their space of worship. This seemingly beneficent seating arrangement, however, allowed many protestors wearing rainbow flags to experience 30 minutes of worship songs with references to sin and redemption, before having a close-encounter with Hill-Perry. The emphatic speaker then recounted her own journey from initially accepting her same-sex attraction to her eventual embrace of heteronormativity due to her rediscovered Christian faith. A few protestors stormed out of the lecture hall during the height of her speech, when she called same-sex attracted Christians to practice “self-denial,” the same way a Christian would deny lying, stealing, and other grave “sins.”

As undergraduate and graduate students at Harvard, we are fortunate to have access to resources that may help us deal with and recover from the detrimental effects from a hate-filled speech like this. Though far from perfect, we do have at least a limited access to mental health services and other support groups on campus. Intellectually, we have academic resources that could dispute the religious reasoning behind homophobia. In his opening question for Hill-Perry, Professor Jonathan Walton of the Memorial Church quickly challenged the flawed theology Hill-Perry relied on, revealing the parallels between biblically justified racism to biblically justified homophobia. Some students from the audience also pointed out several logical missteps in her reasoning, which led Hill-Perry exclaim how “smart” people at Harvard are. Perhaps, she wasn’t used to speaking to a highly academic audience during her tours. Nonetheless, many non-protesting members of the audience, presumably members of the Harvard Christian group, did nod and clap during her speech. If her remarks could resonate with these Harvard students, how much more persuasive would it be in Christian conferences and churches? Who could stand up for LGBT people, especially the youth, in evangelical communities?

It has long been demonstrated that LGBT youths have a much higher suicide and attempted suicide rate comparing to their heterosexual counterparts in the United States and abroad. They are also significantly more likely to suffer from mental health issues ranging from depression to self-harm. Moreover, those living in evangelical families or communities where homophobia is still prevalent are especially vulnerable. Listening to a speech like the one delivered by Hill-Perry may worsen their daily struggles and increase their risk of suicide. Given these health risks of LGBT youths, we might expect that evangelical leaders who “love the sinner but hate the sin” would at least care about the health and safety of these minors, or simply respect their dignity as human beings. However, the reality could be far gloomier, falling short of these minimum expectations. The rest of the essay will turn the discussion toward how LGBT youths might be treated under the practices of Christian health-sharing ministries (HCSMs).

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Prenatal Testing and Human Capabilities

By Aobo Dong

According to Vardit Ravitsky’s paper on “Shifting Landscape of Prenatal Testing,” there exist two competing rationales for prenatal screenings for severe disabling conditions like Down syndrome. The “reproductive-autonomy” rationale justifies screening by invoking a woman’s individual autonomy. In contrast, the “public health rationale” justifies pre-natal screening and termination due to a Down syndrome diagnosis by invoking the costly public health expenditures that must be spent on children born with these disabilities – resembling a utilitarian calculation that minimizes pain and maximizes pleasure for society as a whole. According to Ravisky, the public health rationale creates social pressure that incentivizes women and their families to make the decision to terminate. Thus, the public health rationale is heavily pro-termination, while the individual autonomy rationale could lead women to make decisions in either way. What she proposes as a solution is to combat the public health rationale to allow women to make autonomous decisions free of social pressures, and establish a stronger “informed consent” procedure that better informs the implications of pre-natal screenings and Down syndrome so that women could make the best possible decision for themselves. This blog post will shed more light on this issue by invoking Martha Nussbaum’s capabilities approach to human rights.

A central feature of the capabilities approach is “adaptive preference” that measures the relative success in achieving the 10 core capabilities cross nation-states and social classes. Nussbaum is aware of the fact that “individuals vary greatly in their need for resources and in their ability to convert resources into valuable functioning.” Therefore, it is not even adequate to provide an equal amount of educational resources for one student with Down syndrome and another without any learning disability. Nussbaum would argue that the child needs something even more than a formal education, a proposal that could be much more costly than a regular education alone. She would not assume that a student with the condition must have a low self-worth; instead, she would consider the factors in the child’s social environment that may have caused such low self-esteem, and direct resources to improve the child’s own sense of worth and maximize her future potentials in living a fully human life. This is consistent with capability 7B (respect), which stresses their ability to “be treated as a dignified being whose worth is equal to that of others.” Read More

Health Care Sharing Ministries (HCSMs) after Tax-Penalty Repeal

By Aobo Dong

The passage of the Republican tax reform bill affects the health care industry in ways that might be confusing and unpredictable for tens of millions of Americans. Due to political rhetoric and inaccurate portrayal of the bill, it seems as if the Individual Mandate – an essential element in the ACA – has been fully repealed. Nonetheless, as Health Affairs rightly points out, Section 5000A still remains in the statute to require “minimal essential coverage” for all individuals. Therefore, although the tax bill repealed the tax penalty for not having insurance coverage, the law still technically mandates individuals to acquire health insurance. Moreover, the tax penalty repeal will not take effect until the 2019 tax year, so individuals who are uninsured for more than 2 months in the 2018 tax year may still be liable for paying the tax penalty, unless future laws and regulations, or an executive order from Trump, indicates otherwise.

Under the new regulatory landscape, what could be some potential repercussions for Health Care Sharing Ministries (HCSMs)? These ministries, largely run by evangelical Christians who believe in the merit of private cost sharing, have been benefiting from the Individual Mandate since the inception of the ACA. Under Section 5000A, HCSM members are exempt from paying the tax penalty. The dearth of legal exemptions available and the widespread dislike of Obamacare among white evangelical communities in America likely fueled the rapid growth of HCSMs in recent years. Members pay their monthly “shares” to each other to cover health insurance expanses, without going through a central insurance or governmental agency for redistribution. Read More

The Illusion of Choice in Health Care Consumerism

By Aobo Dong

The rhetoric of “choice” has been pervasive in U.S. health care reforms and the consumerist health care culture for a long time. The idea is that giving patients more choices over doctors and insurance plans would increase competition in the industry and consequently improve the quality of health care patients receive. However, Allison Hoffman made a convincing case debunking this seemingly intuitive idea in this week’s HLS health law workshop. She argued that reform efforts aimed at increasing consumer choice often fail to empower patients to make better health care choices, and instead, create a wasteful market bureaucracy that is anathema to free market ideals. Her argument reminds me of one of my earlier blog posts on U.S. drug prices, where I compared insurance companies to the Central Planner in a socialist economy. Indeed, there are ironically many institutions and features in the so-called market-driven U.S. health care system that resemble authoritarian and technocratic practices that are directly against the principles of a laissez-faire health care economy.

I will expand Professor Hoffman’s argument by making a few additional points. First, her presentation discusses a number of revealing ways in which the market-based competition creates a false sense of choice in health care. Even Obamacare, which is supposed to offer patients more choices in the Exchange, fails to transcend the falsity of consumer choice. Most patients do not make the best available choice, even when they’re “nudged” by experts in the decision-making process. I’d like to also point out that even if consumers are capable of making the best choice for themselves, whether by thinking with perfect rationality or by accepting “expert opinions,” the choice they ultimately make could still be suboptimal or even disastrous. To understand why this might be the case, it is important to realize that the target population for Obamacare is the minority of people who do not have adequate employer-sponsored plans. Thus, many people enrolled in Obamacare may not have stable jobs and income levels. Nonetheless, the mechanism that determines how much premium for which one qualifies is predicated on an estimation of that individual’s projected annul earnings – a number that is hard to know in advance for those without stable income levels. Hence, a person who made the “right choice” by selecting a silver plan with only $100 monthly premium after receiving a $900 subsidy to cover a $1,000 plan at the beginning of a year may find herself owing the federal government thousands of dollars at the end of the tax year, if she happens to end up with a much higher income level. Had she known the future outcome, she would have chosen a less expensive plan to begin with, but either choice would be a gamble for her. This arbitrariness must be attended to in future health reforms. Read More

Elderly Care in the Age of Machine and Automation

By Aobo Dong

Would you be willing to accept a professional care-giving robot as a replacement to a human companion when your loved ones are far away from you? During last week’s HLS Health Law Workshop, Professor Belinda Bennett provided a great overview on the imminent age of machine and automation and the legal and ethical challenges the new era entails, especially in health care law and bioethics. After discussing three areas of potential health law complications, Professor Bennett argued that the field of health law is undergoing a transition from the “bio” to the “digital” or “auto,” and that instead of playing a catching-up game with rapidly evolving technologies, more focus should be placed on learning from past and existing laws and regulations in order to meet new demands from the “second machine age.” However, I wish to propose a closely-related but alternative paradigm, that is, using the issues raised by new technologies as a vehicle for improving existing laws and reshaping social norms that once made existing laws inadequate or flawed. I will elaborate on my point through the author’s own example of elderly care.

Despite the fact that the author advocates a revisionist approach for thinking about health law and technology, her paradigm is still about laws serving the needs and solving concerns of the tech industry intersected with health care. I wonder whether it would be productive to view the issue from the opposite direction, that is, how could new technologies and the challenges they raise inform us about existing laws (revealing blind spots or providing opportunity to improve unjust/unfair/discriminatory laws). Viewed this way, we could not only strengthen connections between past laws and future technologies, but also be guided by a clearer sense of how future legal reforms and regulations could redress past neglect and meet new challenges. Read More

From Westworld to U.S. Prisons: Reframing the Debate on the Right to Health

Is there a “Right to Health?” For many countries in the world, including Latin American countries like Brazil, the answer is easily in the affirmative. Similarly, in the hit HBO show Westworld, the “hosts” (androids on the verge of discovering consciousness) also possess a right to health. How so? Despite atrocious cruelty the human “guests” constantly inflict upon them, the company that runs Westworld maintains a highly extensive, functional “universal health care system” that employs the latest medical technologies for androids to take care of any health problems of all damaged hosts. The efficiency of the system is breathtaking: a cowboy host with 20 bullet wounds and a broken arm could be fully restored overnight; when the sun rises the next morning, the host returns to the simulated reality as if nothing happened.

Of course, the right to health in Westworld is not a result of democratic deliberations or judicial activism that invokes the UDHR or related treaty obligations. Instead, it originates in the sheer necessity of running a seamless alternate reality that requires good maintenance of the hosts, whom the Board depend on to please the guests and maximize the company’s profits. In other words, the physical wellbeing of the hosts is intrinsically tied to the functioning of the entire Westworld machinery and its profitability. Fixing them quickly and adequately allows them to return to their respective, pre-determined roles in a complex narrative with countless plots and subplot twists meticulously designed by their human masters. Read More

The U.S. Drug Price Catastrophe and the Central Planner

By Aobo Dong

If you are fortunate enough to have an insurance plan with extensive coverage and low co-pays for prescription drugs, chances are you may not be overly concerned with the U.S. drug price catastrophe. For millions of Americans without such a plan, getting the much-needed prescribed medicine often involves frustrating multi-player exchanges between the pharmacy, the insurance company, and the doctor, due to complications such as drug pricing and pre-authorization.

The NYT recently launched an investigation into a simple question: “Why Are Drug Prices So High?” One surprising revelation from the study is that deep drug pricing problems may have been contributing to the ongoing opioid crisis, as insurers restrict patient access to less addictive alternatives. For instance, UnitedHealthcare stopped covering Butrans – a drug that had successfully helped Alisa Erkes to ease her excruciating abdominal pain for two years – just to lower its own expenses. Instead, Alisa’s doctor had to put her on long-acting morphine – a drug in a higher category for risk of abuse and dependence than Butrans. However, since it costs the insurance company only $29 a month, UnitedHealthcare covered it with no questions asked. Read More