bioethics

Protecting the sexual rights of our grandparents

R. Horton

Bioethicists and experts on aging spend some time advising people on advance directives aimed at helping us make decisions about our medical care in the event of dementia or unconsciousness near the end of our lives. The idea is that we may give prior consent for decisions to be made when consent is not possible. We generally make decisions about what treatments should be offered or withheld in the event of fading autonomy.

Perhaps we should consider a broader range of choices as well. In some cases, a personGrowing-Old-Together-800px with dementia can consent to a variety of activities that might not have seemed appropriate previously. In Holding and Letting Go: The Social Practice of Personal Identities, Hilde Lindemann gives an example of a life-long vegetarian and animal rights activist who ends up in a residential care facility and desperately wants to eat the meat dishes offered his fellow residents. Should his earlier convictions be respected or should his later desires be sated?

Lindemann breaks down the problem by identifying a capacity for two types of volition: primary and secondary. Primary volition is simply the ability to want something. Secondary volition is the ability to want something but think better of it because of overriding desires, which could be based on moral, social, or health concerns (among others). Our resident is able to want a hamburger but not able to think about the ethics of eating meat and how it affects the animals, the environment, or the economy. People who eat meat tend to say it is harmless to give him a hamburger, so his current desires should be indulged. People who care about animals might take a different view.

But what if we weren’t talking about eating meat? Perhaps our resident never cared about animals, but did care about sexual behavior. He may have been prude or strict moralist. Now, however, he would quite like to masturbate frequently and doesn’t mind who sees or knows. In the past, of course, he would have been more discreet, but he has lost the ability to take such concerns into account. Still, it is his body, and he should be able to do what he wants, even if the comfort of other residents and staff must also be considered. When the occasion arises, Mr. X might gently be guided to a private room.

Or he may meet a fellow resident with similar desires. Surely consensual sexual activity, with allowances for the comfort of other residents and staff, should be respected. When younger people have limited autonomy, we are likely to say they are incapable of consent, making sexual relations with them problematic at the least. Such patients are “protected” from sexual advances of any kind, even if they may appear to be willing “victims.”

Rarely is this debate framed as a “right” to sexual pleasure, but sexual puritanism is the only reasonable explanation for the imbalance in the discussion. Surely sexual pleasure is a human drive and a human need. If it isn’t such a strong drive for older patients, it is certainly still a human good. Currently, even the most progressive attitudes toward sexual pleasure for older patients could only be described as polite tolerance rather than accommodation.

To actually accommodate the sexual needs and desires of older, and sometimes demented, patients would require conversations and actions that are sure to make us uncomfortable. It may be possible to discreetly make condoms available to residents in nursing homes, but asking residents whether they might want a vibrator or other sexual aid available is more of a challenge. Involving children and grandchildren in the discussions is likely to be an insurmountable model, at least without a sea change toward sexual behavior in general and among the elderly in particular.

A further difficulty is posed by the possibility of sexual assault or exploitation. Normal guidelines for consent won’t do. A demented patient might consent to sexual activity that would never have occurred in the absence of dementia. The only way to honor the wishes of a patient’s lifelong values is to have difficult discussions earlier in life. We would need to ask question of this nature: “In the event of dementia, what types of sexual pleasure if any would you like to be available to you? What types of sex if any would you consider appropriate with other people? What types of sexual aids if any would you want provided for your pleasure?”

I would caution any young people thinking of completing an advance directive now to reconsider often. As we age, our estimation of what kind of sex lives we will want in old age changes dramatically. Younger people tend to assume that older people naturally lose interest in sex, and I’m sure some do, but many older people find the opposite.

Sexual pleasure has many advantages for older people. It doesn’t cost a great deal of money or effort. While illness and disability can limit sexual options for people of any age, they do not eliminate it. Sexual pleasure doesn’t require one to leave a residential facility, isn’t inherently risky (especially when partners are not involved), and doesn’t necessarily strain the budget (expensive sex toys and porn addictions notwithstanding). In fact, for many older patients, sexual pleasure may be one of a handful of pleasures still available to them.

Some of the risks of sexual behavior are no longer of concern to older patients. While sexually transmitted diseases are still a distinct possibility, many of the diseases seem much less frightening to someone nearing the end of life. Further, pregnancy is no longer a concern, and people who have already lost their spouses are no longer concerned with issues related to fidelity. In ways the young rarely understand, old age is liberating.

Of course, sexual activity of patents has the possibility of creating discomfort for staff. Taking care of a patient should not mean providing sexual services for patients, unless one is specifically hired as a sexual surrogate. Staff must be protected from sexual assault or exploitation. However, feeling squeamish or embarrassed is not the same thing as enduring sexual harassment or assault, and staff must know the difference.

We can make staff more comfortable by becoming more comfortable ourselves with elder sexuality. Normalizing mature sexuality will go a long way toward opening frank and productive discussions of policy and procedures to protect the sexual rights of patients.

Can Ethical Review Be Automated?

R. Horton

I often told my students of the connection between comedy and philosophy, noting that many popular comedians have an academic background in philosophy. [Editor’s note: insert generic list of philosophical comedians here.] Hoping to validate my statement and gain interest points for himself, one student approached me to say he went to the comedy club and the comedian joked that he started doing comedy after graduating with a philosophy degree and learning that “all the big philosophy firms” were not hiring.

It is a good joke, but I’m assuming this comedian was not a bioethicist. According to the prominent and well-paid bioethicist Arthur Caplan (whose comments appeared in this article by Sheila Kaplan for STAT), for-profit review boards complete almost all institutional review of research ethics. He is quoted as saying, “If you want to work in research ethics,” he said, “you work with them.’’

In other words, institutions developing research protocols, farm out the review of the protocols to for-profit ethical review. If you’ve ever reviewed research proposals, you know that it is a little bit mechanical, anyway. You ask basic questions: 1. Is there a consent form? 2. Is the consent form complete? 3. Are appropriate disclosures included? And so on. Most people involved in review, tick through a checklist to make sure everything is in order.

The work is tedious and mostly clerical, if we are honest. It makes sense to just pay someone to go through and make sure everything is in order. Leave it to the professionals. It saves time and may ensure nothing is overlooked. It is worth the investment to make sure nothing slows down your project or results in embarrassment down the line. The professionals know exactly what they are doing, and you want it done right.

While it makes perfect sense to hire a professional review of your protocol to ensure it meets all legal and regulatory requirements, I fear a professional reviewer will work to find ways to make the protocol successful rather than questioning whether the whole venture passes ethical muster.

The problem is that I’m not sure how you move from “How can we do this according to established ethical standards?” to “How can we act ethically in the pursuit of the good?” Is it possible to seek the good life for hire? Or, is it possible for competent ethicists to exist if they are not paid for their work? How do we create space for genuine soul searching among ethicists?

Of course, ethicists need to be paid for their expertise and work, but it raises problems when how much they earn is tied to what answer they give. A commercial IRB won’t get much businesses if it tells all its customers their research is unethical, so at least some ethicists need to be free to comment on research and all other areas of life and work without their specific answers affecting their income.

Further, the work of such independent ethicists must not be disregarded specifically because they are outsiders. Ethicists working within a system are necessary and their expertise is valuable, but only outsider ethicists are able to comment freely and honestly.

At some point, you have to ask how your work looks to outsiders. People within a system are often amazed that anyone outside the system could possibly doubt their motives, but it may be the outsider who sees your motives most clearly.

Privatization eliminates spaces for free inquiry. While private enterprise certainly has a role in medicine and research, it is imperative that we preserve or create public spaces for ethical discourse. It isn’t a question of experts versus non-experts. It is a question of ethicists with something to gain compared to those with nothing to lose. Sometimes, you have to listen to the voices of those with nothing to lose.

Illness as Financial Ruin (US only)

R. Horton

Every human who has drawn a breath has faced illness, injury, and death. The universal experience of illness creates vulnerability, loss of identity, anxiety, diminished autonomy, and fear. The inescapable battle between health and illness defines human experience and shapes our personalities, our worldviews, and spiritual depth.

For most of the developed world, though, it does not mean financial ruin. In the United States, alone among developed nations, even a relatively minor injury such as broken bones or illness requiring a brief hospital stay can lead to economic disaster. As a result, when we in the US get sick, we don’t think about how we can recover, how we can endure the pain, or the spiritual significance of our pain; rather, we think of how we will pay for our bills.

poorunclesam-800pxAs we face our anxiety over possible diagnoses, we must constantly be prepared to battle with insurance companies, aggressive hospital billing agents, and doctors exhausted from dealing with insurance paperwork. Few things in life create as much anxiety as financial insecurity, and illness always brings the threat of insecurity to US residents. When people have serious accidents, they balk at calling an ambulance because they fear the bills—they worry over whether the ride will be covered and whether the ambulance will take them to a hospital that is in-network. As a result, many people suffering medical emergencies drive themselves to the hospital.

When it isn’t an emergency, Americans often forgo treatment altogether. A Gallup poll in 2014 found that one-third of Americans skip needed medical treatment because of cost concerns, even when they have insurance.  According to the report, “Some 34% of Americans with private health insurance say they’ve skipped out on care because it was too expensive, up from 25% last year. Additionally, 28% of households that earn $75,000 or more report that family members have delayed care, up from just 17% last year.” The Affordable Care Act succeeded in insuring more people, but it also created greater financial burdens for middle-income families through higher deductibles and co-pays. Many people who have been accustomed to being able to afford healthcare now find that it is out of reach.

While healthcare inflation has slowed a bit in recent years,  catastrophic medical events put the costs incurred out of the reach of most of us. The United States alone finds medical fundraisers to be normal and routine. According to an article in Journal News, the number of GoFundMe contributions for medical expenses “was up more than 293 percent in 2014, when more than 600,000 medical campaigns were launched, compared to just over 158,000 in 2013.”  Families with or without insurance cannot afford their medical bills. A serious accident or illness such as cancer creates an existential crisis while forcing people suffering from illness and their families to scramble to avoid destitution.

I don’t write this impersonally, my wife and I buy our insurance through the healthcare exchanges. We pay $682 per month ($8,184 per year) with a $4,000 deductible per person. The out-of-pocket limit on expenses is $13,700 per year. Balance-billed charges do not apply to the out-of-pocket limits, so there really is no upper limit to possible charges. Ignoring balance billing, my costs could easily exceed $20,000 per year.

I often hear the argument that universal healthcare coverage is too expensive and will require raising taxes on the middle class. As I see it, I would still benefit from a tax rise of $15,000 or even $20,000 each year. It is true that others are not in my position, but all Americans should realize they are at risk. No one stays young and healthy. Eventually, everyone will be at greater risk for catastrophic illness, but even those who are currently young and healthy can face illness and injury, though we may not like to think about it. Further, everyone’s income is subject to great variability. Those who have employer-provided health insurance may not want to pay in to a national system, but employer-provided insurance is never guaranteed. Employers may cut benefits, employees lose jobs through layoffs and termination, or illness can end employees’ ability to work.

The same is true for business owners. The tides of fortune shift. When the Affordable Care Act was passed, Mary Brown brought a lawsuit against it, saying she did not want to be compelled to purchase health insurance. Mary Brown owned an auto repair shop that went under due to the pressure of economic recession and the Gulf oil spill in 2010. Of note, her bankruptcy filing listed “among the couple’s unsecured creditors several providers of medical care – a hospital and a physician group in Florida; an anesthesiology group based in Mississippi; and an eye care center in Alabama.” https://newrepublic.com/article/98145/affordable-care-act-mandate-lawsuit-nfib-mary-brown-bankruptcy-court-standing

Like many people, when she was doing well, Mary Brown thought that guaranteed universal access to healthcare was something the government was providing to other people. It didn’t occur to her that she might ever be in a position where she could not pay for her own medical care, but that is exactly what happened. I recently had the opportunity to speak to a Swedish citizen about Sweden’s healthcare system. He was a middle-aged man who explained that healthcare was paid through higher taxes. He said he didn’t mind the taxes, though, because you never know when you will be the one needing care.

It seems many Americans are not able to make this basic calculation of risk. Most people, even those who consider themselves well off, are not immune from the financial ruin that illness and injury can bring. Once people realize their own vulnerability, they support universal coverage for healthcare. The time for a more sober and accurate assessment of risk is well past due. We must wake up to the fact that the US healthcare system is not sustainable, that it leaves us at risk of financial failure, that it makes the experience of illness exponentially more stressful, and that we can do better.

It will not be easy. The US spends far more than other developed nations on healthcare. Each excess dollar we spend is profit for an insurance company, hospital, testing facility, pharmaceutical company, biotechnology company, or other player in the healthcare industry. Many people profit from the dangerous, expensive, and inefficient system we have in the United States. Every reduction in healthcare spending will be a reduction in profit for someone, and each person (or business) facing a loss of income will argue vehemently and vociferously that such a loss of income is a horrible tragedy and an impossible feat.

We will be told that reducing healthcare spending will reduce the quality of care. We will be told it will reduce our choices and control. We will be told it is impossible. We already have little choice or control, and we already have higher mortality rates than the rest of the industrialized world, so we have nothing to lose and everything to gain. We have plenty of ideas on how to improve the system. What we lack is political will, but I think the will is growing. If we want universal coverage, we must demand it, and the time to demand it is now.

 

Sparkle, Autonomy, and the Right to Die

R. Horton1 Comment

Recently a woman in the UK known only as C won the right to effectively end her life by refusing dialysis treatment. Owen Bowcott, writing for The Guardian described it as a “highly unusual judgment,” but, in making the decision, the judge said, ““This position reflects the value that society places on personal autonomy in matters of medical treatment and the very long established right of the patient to choose to accept or refuse medical treatment from his or her doctor.”

The judge is correct; the right to refuse treatment is one of the bedrock principles of medical ethics. In most medical decisions, autonomy trumps all other considerations, including efficacy of possible treatment. In other words, you are not obligated to accept treatment simply because it will prolong your life. This is the newnhamm-MultiColored-Sparkle-fixed-2400pxway things work in the world of medicine, but there could be other approaches.

Given the facts of this case, it seems a suicidal person sort of “lucks out” when an unrelated medical issue arises. Unlike C, not everyone seeking death is able to find a legal way out. Those who are so physically incapacitated that they cannot possibly end their lives without help often find too many roadblocks to death to ever carry it out. Even when healthy people try to commit suicide, the rest of us are obligated to prevent it when possible. If we find someone who has taken a drug overdose, for example, we try to save him or her. If someone is trying to jump off a bridge, we try to prevent it. And if someone asks for drugs to commit suicide, only a few places in the world allow them to be prescribed.

It is clear that we do not always respect the autonomy of suicidal individuals. Even in the case of C, the judge said, “My decision that C has capacity to decide whether or not to accept dialysis does not, and should not prevent her treating doctors from continuing to seek to engage with C in an effort to persuade her of the benefits of receiving life-saving treatment in accordance with their duty to C as their patient.” The judge seems to feel that the doctors ought to continue trying to save C, even while recognizing that she has the right to refuse treatment.

Clearly, the law in this case is built around autonomy, but perhaps it shouldn’t be. Autonomy assumes a rational and unimpaired person making a fully informed decision. The judge notes that C is fully functional and has no cognitive impairments. At the same time, though, C is facing a diagnosis of breast cancer and a severely damaged self-image. It isn’t clear that she may not modify her view with a little time and, perhaps, psychotherapy.

If her mental health is impaired, she may not be fully autonomous in the first place. If she isn’t, then perhaps she needs care more than freedom. An Ethics of Care would possible guide us to respect her wishes as well as her needs. A little more time may be needed to assess whether her decision, which is not reversible, is truly the decision she wants to make. With a little time and support, she may come to believe that sparkle is still possible for her.

I also think a focus on capabilities might be relevant. An ethics focused on capabilities would try to enable her to have a fulfilling life by maximizing the abilities she still has. Care and capabilities both emerged as feminist approaches to ethics and justice. While on the surface, this may not seem to be a feminist issue, but the judge also said, “It is clear that during her life C has placed a significant premium on youth and beauty and on living a life that, in C’s words, ‘sparkles’.”

It is clear that C has operated under rather sexist values for most of her life. That is her choice, to be sure, but it might be possible to find new values. Many who have experienced crippling injuries have sought suicide only to later find their lives are valuable and meaningful even without the activities and relationships they once held dear.

Book Review: The Experiment Must Continue by Melissa Graboyes

R. Horton

We all have a complicated relationship with medical research. We know that every effective treatment or therapy that exists was once an experimental treatment or therapy. We know that some drugs have been so effective that they eradicated various diseases completely, and we also know that someone had to be the first one to try all those new drugs. On the other hand, most new drugs don’t work out. Some are simply not effective, some are effective but have serious side effects that make them all but useless, and others turn out to be deadly.

Medical research is plagued with problems related to consent, coercion, therapeutic misconception, benefit, and access. All these problems exist Medical-Research-800pxin North America and Europe with both well educated, affluent populations and with so-called “vulnerable” populations.

Informed consent is an example. Virtually everyone agrees that patients who participate in medical research should know about and agree to their own participation. Ethics committees, lawyers, and bioethicists have gone to great pains to develop procedures for proper informed consent procedures. Sadly, too many people talk to their doctors about treatment options, hear about ongoing research, and sign consent forms without actually realizing they have agreed to participate in a medical experiment. Despite the best intentions of everyone involved, patients believe they are receiving treatment that is expected to help them (therapeutic misconception).

I sometimes use the HBO film adaptation of Margaret Edson’s play, W;t, in my classes. The main character in the play agrees to experimental treatment, is informed of the side effects and goals of the research, and then goes on to suffer tremendously for her decision. When I have my students write about the movie, more than half of them still believe the doctors were trying to cure the cancer of the main character. Despite all the frank discussions of the research, they still don’t understand that the protagonist was never expected to benefit from the treatments she was receiving. Furthermore, the character never seemed to fully realize that her participation was never expected to benefit her in any way.

If these kinds of misunderstandings happen between researchers and research participants from the same culture speaking the same language, the problems are sure to be compounded by cross-cultural communication. In her book, The Experiment Must Continue: Medical Research and Ethics in East Africa 1940 – 2014,Melissa Graboyes explores ethical challenges and lapses in numerous studies conducted in East Africa. Her book is a refreshing attempt to shed “conventional wisdom” about research in Africa.

For example, I think anyone who has studied research ethics has heard that African chiefs would sometimes provide consent for all the people in a village to participate in research projects. Graboyes says she could find no evidence that anyone in any of the locations under study ever recognized the right of anyone to give collective consent for a group of people. Further, many describe African research participants as “vulnerable” populations with little to no agency. In the sense that many people lack adequate medical care, they are vulnerable, but Graboyes challenges the notion that they lack agency and gives several examples of Africans responding actively and rationally to both exploitative research and beneficial research. In short, she shows that they are actually persons with wills, minds, autonomy, and awareness.

Another common theme for those studying research ethics is the use of coercion to get people to enroll in trials. Many wring their hands worrying over whether offering payment or gifts might unduly coerce potential participants whose desperate poverty might drive them to enroll. Those who did enroll, however, were more concerned about inadequate compensation than undue coercion. Participants realized that others would benefit from research carried out on their bodies or in their homes. In exchange for participating, they felt some reasonable benefit was due, whether it be in the form of cash, medicine, or health services.

One possible benefit, of course, is access to medicines researchers commonly advertise that participants will receive a new treatment at no charge. Many African participants assumed they were trading their blood for research and in turn would receive medicines that would benefit them. In some cases, participants did receive helpful medications, but those medicines were then withheld from them at the end of research, even if it proved to be effective. Researchers say it isn’t their responsibility to provide the medications, which may or may not be expensive, but leaving people with the knowledge that an effective treatment exists without making one available seems to me to be a particularly cruel kind of harm

In the United States, people also expect access to new medications. When people find they have a terminal illness, they will often (I want to say usually) demand to receive experimental medicines. In the 1980s, AIDS activists in the US demanded that experimental treatments be distributed to HIV-positive individuals, and demands for quick approval for experimental drugs have become routine. In this sense, medical research may be a victim of its own success. Most people in either America or Africa fail to appreciate the risk they take with unproven medicines.

Although many researchers view Africa as a fertile field for research (many describe Africans and “walking pathological museums) for the abundance of diseases present and for the relative low costs involved compared to research conducted in Europe and North American. Graboyes describes both successes and failures in East Africa, but the failures can be depressing. In some cases the research never got off the ground, in some it never produces usable results, and in some it made conditions much worse.

Is it unethical to conduct research in Africa? Graboyes doesn’t think it is necessarily unethical to conduct research in East Africa, but she does feel some of the research has been unethical, some simply misguided, and some poorly designed. Many Africans do not trust researchers, which is frustrating to researchers who feel they are on a noble quest to end disease, but many of them fail to realize how many researchers have told outright and deliberate lies in East Africa. People do not forget so easily.

I don’t want to give away too many details of the book, as it can become something of a page-turner. One last thing I will mention, though, is the fact that Graboyes was aware that she was another researcher visiting East Africa asking for cooperation. Although she wasn’t taking blood, spraying insecticides, or injecting treatments, she still needed to ensure that she was proceeding ethically and had the trust of the people she was interviewing. Her efforts are admirable but remind us that any reporting of facts is a matter of interpretation and may be subject to modification.

This book is admirable and compelling, especially for those interested in the ethics of international research. In addition, her insights might help to develop better ethical practices for domestic research, as many of the issues are the same.

Reid Ewing and the Failure of Autonomy in Bioethics

R. Horton3 Comments

Reid Ewing of Modern Family fame recently wrote publicly about his struggle with body dysmorphia in a personal essay on the Huffington Post. Ewing revealed that his dysmorphia led him to seek and receive several surgeries. He feels his surgeons should have recognized his mental illness and refused to perform surgery. He wrote, “Of the four doctors who worked on me, not one had mental health screenings in place for their patients, except for asking if I had a history of depression.”

The principle of autonomy is by far the most discussed principle of bioethics. Discussions typically focus on the rights of patients to refuse treatments, not to seek them. On either side, the issues can be thorny. If a depressed and suicidal patient refuses life-prolonging treatment, is it ethical to respect the patient’s autonomy or should mental health services be provided first? As in Ewing’s case, the ethical problem arises from the claim that the decision is driven by mental illness and not reason. If someone is mentally ill, they are not fully autonomous agents as they are not fully rational.

This is a problem with autonomy in general. Our ideas of autonomy come largely from Immanuel Kant, who claimed that all rational beings, operating under full autonomy, would choose the same universal moral laws. If someone thinks it is okay to kill or lie, the person is either not johnny-automatic-gloved-hand-with-scalpel-800pxrational or lacks a good will. How do we determine whether someone is rational? Usually, most of us assume people who agree with our decisions are rational and those who do not are not rational. If they are not rational, they are not autonomous, so it is ethical to intervene to care for and protect them.

Earlier this year, a woman named Jewel Shuping claimed a psychologist helped her blind herself. She says she has always suffered from Body Integrity Identity Disorder (although able-bodied, she identified as a person with a disability). Most doctors, understandably, refuse to help people damage their healthy bodies to become disabled, which can lead clients to desperate measures to destroy limbs or other body parts, sometimes possibly endangering others.

Jewel Shuping never named the psychologist who may have helped her, so it is impossible to check the story. It is possible to imagine, however, that some doctors would help someone with BIID in the hopes of preventing further damage to themselves or others. Shuping says she feels she should be living as a blind person, and she appreciates the help she received to become blind. In contrast, Ewing feels he should have undergone a mental health screening before he was able to obtain his surgery and that his wishes should not have been respected.

Plastic surgeons are often vilified as greedy and unscrupulous doctors who will destroy clients’ self-esteem only to profit from their self-loathing. On the other hand, these same plastic surgeons are hailed as heroes when they are able to restore beauty to someone who has been disfigured in an accident or by disease. Unfortunately, we do not have bright lines to separate needless surgery to enhance someone’s self image and restorative surgery to spare someone from a life of social isolation and shame. Some would argue the decision should not be up to the doctors in the first place but should be left in the autonomous hands of clients.

Many have similarly argued that doctors should refuse gender confirmation surgery to transgender men and women. As with BIID, many assume that transgender individuals are mentally ill and should see a mental health professional, not a surgeon. Transgender activists (and I) argue that transgender individuals need empowerment to live as the gender that best fits what they actually are. If surgery helps them along that path, they should have access.

All this leaves us with the question of when to respect autonomy and when to take the role of caregiver, which may involve a degree of paternalism (or maternalism for that matter). Is it more important for doctors who ensure the patient’s rights to seek whatever treatment they see fit, or is it more important to provide a caring and guiding hand to resolve underlying mental health issues before offering any treatment at all?

One of Ewing’s complaints is that he was offered plastic surgery on demand with no screening at all. The process for people seeking gender confirmation surgery, by contrast, is arduous. Before surgery, transgender people go through counseling and live as their true gender for an extended period of time. At the far end of the spectrum, people with BIID rarely find doctors willing to help them destroy parts of their bodies and resort to self-harm. These three cases are not the same, but make similar demands on the distinctions between respect for autonomy and a commitment to compassionate care.

It seems reasonable to accept Ewing’s claim that mental health screenings should be a part of body modification surgery, especially when someone has no obvious flaws that need to be repaired. In all these cases (dysmorphia, gender identity, and BIID), mental health support is necessary. In each case, patients describe depression, emotional turmoil, and, too often, thoughts or attempts of suicide. Mental health care does not require a violation of autonomy, but it may help a person’s autonomous decisions to form more clearly from deliberation and not desperation.

 

Attribute Substitution and Public Health

R. Horton2 Comments

Partly in response to a series of posts in the New England Journal of Medicine dealing with conflicts of interest in medical research, Austin Frakt wrote a piece for the New York Times titled, “A New Way to Think About Conflicts of Interest in Medicine.”  In the end, he claims that too many critics dismiss a study simply because it received industry funding, and he says this is a kind of attribute substitution (this is a fallacy whereby something may be rejected because it is associated with something negative, rather than on its own merits).

This is a bit of red herring, because attribute substitution is not always such a bad thing. If I am negotiating to buy a new car, it may be that everything checks out regarding the engine, interior, paint, brakes, and so on, but I may reject the car simply because I happen to know it is stolen. The fact that it is stolen doesn’t make it a bad car, but it does make it spectroscopeone I would not want to buy. In the same way, the fact that a study is industry funded does not prove it is a bad study, but it is possible for a reasonable person to object to it simply on the grounds that its funding encourages unethical behavior.

Also in his essay, Frakt mentions that research is often tainted by many things that are not industry funding: things like personal relationships, religious bias, and overweening personal ambition. On the other hand, industry-funded research often yields excellent, well-controlled studies with beneficial results.

All this is true, of course, and there may be critics out there who believe that no industry-funded research should be published, but I think that is an unusual view. What is more common is to call for disclosure of financial ties to industry. With such disclosure, readers can evaluate the data with an understanding of the possible bias of researchers. More importantly, in my opinion, is that disclosure helps us see whether anyone from outside of industry is working on the same problem.

Disclosure does nothing to eliminate bias. If I know that someone is working for Pharma Co. X, I know she is trying to develop profitable products for her employer. The best path to a high profit is probably through rigorously controlled research. The bias of the researcher is to develop a profitable product, and disclosure will not change that bias; it isn’t a conflict of interest as profit is really the only interest driving the research.

The problem is that most research is now funded by industry (in 2012, industry funded about 59 percent of medical research in the US).  When researchers are hired to create marketable products they are, indeed, motivated to show bias both in how they conduct their research and in what kind of research they begin in the first place. Unethical practices can happen both within and without industry, but we are better to have a variety of ways to fund research, and we are better to have transparency about how research is funded and how it is conducted. We need to know how research participants were recruited. We need to know what data was and was not used. On the issue of transparency, I agree completely with Frakt: “To the extent research design and methods are not up to snuff, that’s the red flag — the door through which conflicts of interest enter and exert undue influence. More rigorous, transparent and reliable research from both industry and nonindustry sources would reduce the need to lean so heavily on mental shortcuts like attribute substitution in judging scientific merit.”

Finally, we need to know whether research was aimed at reducing human suffering or merely at generating profits. On a good day, these two goals are perfectly aligned. On a normal day, reducing human suffering is at odds with creating products. I’ve mentioned before philosopher Thomas Pogge’s efforts to create incentives for companies to develop drugs for conditions that may not be profitable, and I think it is worth mentioning his Health Impact Fund once again. Pogge’s solution is one that works fairly well with market-based thinking. Love it or hate it, it is a good effort. Other solutions are possible, though. Governments could pool resources to simply set up labs and hire scientists to develop cures for diseases that affect global health. Capitalist investors might also want to develop cures in order to capitalize on improved human resources as John Rockefeller did about a hundred years ago.

Yes, I realize government funding and charitable institutes still exist (Rockefeller’s legacy continues), but research for profit (and only for profit) threatens our ability to continue advances in public health. We need greater transparency (of financial ties and data transparency) in research, greater protection for research subjects, more variety in funding sources, and more checks to replicate and confirm findings. It may be expensive, but mistakes are expensive, too.

Medicare at 50: Our Moral Imperative

R. Horton1 Comment

Last year, on the 49th anniversary of Medicare, I wrote a post advocating the expansion of Medicare to ensure that everyone in the United States can have access to basic healthcare. In the past year, I have read and heard many arguments against the expansion of Medicare and, in fact, single-payer systems in general. As I read the arguments, I realize that in a sense “Medicare for All” and “single-payer” have become a shorthand way of saying we need to guarantee “universal access to healthcare,” but I still think Medicare for All is the way to go in the United States.

I happily admit, though, that my commitment is to universal access to healthcare, not Medicare. The first step, in my opinion, is to declare that we will provide access to medicare for allhealthcare to all United States citizens. Take this simple idea, and make it law: We will provide healthcare to every citizen of the United States. Once that law is passed, we can have extended debates about whether Medicare can fulfill the purpose of guaranteeing that all citizens will have access to healthcare (my repetition is intentional).

Here are some of the objections I’ve heard and read to expanding Medicare along with my replies:

I don’t want to pay for healthcare for people who are too lazy to work.

Many people I talk to are extremely optimistic about their ability to pay for their healthcare in the case of extreme illness or injury. The fact that you’ve made it so far only means you’ve been lucky, not self-sufficient. Mary Brown, who sued the government over the Affordable Care Act because she didn’t want to purchase insurance, went bankrupt and was unable to pay her bills. In response to her own bankruptcy, Brown reportedly said, “”I believe that anyone has unforeseen things that happen to them that are beyond their control.”  Yes, and the Affordable Care Act was designed to reduce the impact of unforeseen illness and injury. Unlike Mary Brown, many people who become medically bankrupt had insurance but weren’t able to cover their medical bills, anyway. A study in 2007 found that three-fourths of people who were medially bankrupt had insurance.  A study by NerdWallet Health found in 2013 that “Despite having year-round insurance coverage, 10 million insured Americans ages 19-64 will face bills they are unable to pay.”

For people who do have insurance, most get it through their employers. Too many people seem to forget that when they face unforeseen illness or injury, they will also be unable to work and are likely to lose their employer-provided insurance. If not immediately, it will happen sometime further down the road. Whether the road is long or short, it leads to bankruptcy. While some are rich enough to be impervious to mounting medical debt, most of us are not. A few hundred thousand dollars may sound like a safe cushion against medical disaster, but many life-saving treatments exceed that amount quickly. Selling your house and other assets to pay your medical bills may not be a solution. In fact it probably is not a solution.

The fact is that supporting a national program to guarantee access to healthcare free from the risk of burdensome medical debt is not something you should do only for other people. It is something you should do for yourself. And it is something we should do for our country.

As a nation, we share many burdens: national defense, national safety, public health, personal security. Like infrastructure and security, we are not talking about items we can choose to forgo in leaner times. These are basic human needs. Any society that does not meet the basic needs of its citizens will falter. If we can share the cost of providing a strong military, food inspectors, fire fighters, and police, we can share the cost of providing health services. The financial life you save may be your own.

Most countries don’t have a true single-payer system.

The argument here is that many countries that do guarantee universal access to healthcare do not use a “true” single-payer system. I am willing to concede that even Medicare for All might technically require the use of more than one payer. What is important, really, is that the payers are not invested in fleecing their clients, which often seems to be the case with for-profit insurance companies. In fact, if we had a single for-profit insurance monopoly, we might find our processes somewhat more efficient but not beneficial for consumers, so it matters who the single payer is as well. Just to repeat: we must have a system that guarantees access to healthcare without the risk of bankruptcy.

Medicare is fraught with fraud and abuse.

No one can deny that fraud and abuse exist within the current Medicare system. We need greater transparency, oversight, and regulation of the system and of the providers. Also, Medicare must have the ability to negotiate prices, unlike the disastrous Medicare Part D that currently exists for prescription drugs.

Corporations will game the system.

It is true that for-profit providers, whether they are pharmaceutical companies, for-profit hospitals, biotechnology companies, medical equipment suppliers or food vendors, will strive to earn as much profit as is humanly possible. This is why we need a system that empowers taxpayers to hold bad actors accountable and demand transparency regarding pricing and profit. Corporations will serve the common good only when common people demand that they do. Fatalism is an excuse to avoid the hard work of diligence.

We need price controls.

Again, simply removing all but one payer will not, on its own, lower prices. If Medicare simply sent checks to providers for whatever charges they submitted, the United States would continue to have the costliest healthcare system in the world. Medicare must have the ability to negotiate prices and set limits on unchecked profits.

We must limit unnecessary tests and treatments.

In a pay-for-service system, hospitals, labs, equipment manufacturers, and others make money every time someone is tested or treated for anything at all. More and more studies are finding that many tests lead to unnecessary treatment, waste money, and (even worse) cause more injury and death than they prevent. Unfortunately, limiting the number of tests and treatments available to patients is likely to be perceived as (shriek) rationing.

With our current system, we trust insurance companies to refuse payments for useless or harmful tests and treatments, but we know this does not always happen. When it does, clients fear they are being denied necessary tests and treatments. They fear this largely because it is sometimes true. Whether Medicare is expanded or not, we need better ways to evaluate what tests and treatments are beneficial, and we need better ways of educating patients on what is and is not beneficial.

Movements toward paying providers for results, not services, may reduce unnecessary and harmful services greatly. It may also force patients to become more responsible for their own health.

Finally

The only real imperative here is that we, as a nation, must decide whether we will provide access to healthcare for all our citizens. Once we agree that we will, we can begin to work out the most efficient and cost-effective means for achieving our goals. Almost no one in the United States is immune from the possibility of medical disaster and bankruptcy. This is a matter of caring for our fellow citizens, but it is also a matter of caring for ourselves.

On the 50th anniversary of Medicare, take a stand for healthcare justice.

The Ethics of Professional Ethics

R. Horton

When I was defending my dissertation a few years ago, a committee member asked me how I would respond to a tobacco company who asked me to advise them on the most ethical ways to harvest tobacco grown on farms in South America. I first answered, honestly, that I couldn’t imagine working for a tobacco company, but then I added that the only advice I could think of would be to choose a more ethical product in the first place and then worry about fair treatment of workers, protection of the environment, and so on.

It would, of course, be difficult to make a living as a professional ethicist if you simply Briberyadvised all your clients to go out of business. Accepting a paying job creates a financial conflict of interest from the beginning. If you want to keep your job, you will immediately know the parameters of your possible advice. In the worst case, you will simply be giving rubber-stamp approval to the activities of your boss. In the extreme case of a tobacco company, this conflict may be clear, but other conflicts are much less obvious.

The best problem for an ethicist to have, I think, would be an opportunity to work for a company or organizations with the same goals and values of the ethicist. It would make sense for a vegan ethicist to want to work for a company that sells cruelty-free products. If the company hired an ethicist to determine what practices ere ethical, it would be a perfect situation, but this is a case of an organization seeking out an ethicist whose conclusions are already known. This is hardly an ethics consultation. And just to vary the scenario a little, it is unlikely that a Catholic-owned organization is going to want to hire an ethicists who does not believe in the sanctity of life just as an organization providing contraception services would not want to hire a Catholic ethicists. If you can simply shop for an ethicist who agrees with your actions beforehand, there is no point in hiring an ethicist.

In some cases, companies really do want to seek expert advice on how to proceed on various products and actions. They seek out, naturally, ethicists who share their overall values but have additional training and demonstrated expertise in evaluating ethical quandaries. When helping some one choose between X and Y, ethicists can make a fairly objective evaluation, given that neither choice is presented as the preferred choice. Rather than “Have we been ethical?” the organization is asking, “Which of these two choices is the most ethical way to proceed?” In this case, asking more than one ethicist would seem advisable. Then, the organization is still responsible for its decision, but it is based on more (and more nuanced) information. Still, it is possible for people to use the ethicist for moral cover (“Hey, the ethicist said it is ok, so there!). Providing moral cover for your employer is just never going to look good.

Ethicists can proceed, though, by offering a thorough analysis without necessarily giving a green light to any particular action. With so much training behind them, ethicists should be well prepared to answer questions about agency, autonomy, rights along with background information on previous cases and debates. We don’t need to reinvent the wheel each time a new problem arises.

The professional ethicist can help with questions such as:

  • What are violations of autonomy?
    Is autonomy the only concern?
    What is the importance of narrative in moral decision-making?
    Do men and women operate with different moral frameworks?
    What are moral agents?
    Who is (or should be) of moral concern?
    What is the importance of virtue in organizational ethics?
    Is care necessarily part of ethical deliberation?
    What are positive and negative rights?
    Which moral choices are obligatory and which are supererogatory?
    What is the difference between human rights, human development, and human capabilities?
    Who is responsible for justice?
    Must ethical decisions be impartial (do family and friends matter more)?

All Research Is Biased – Might As Well Get Paid For It

R. Horton1 Comment

Capitalist Epistemology: Is Money Truth?

On November 28, 2014, the BMJ (formerly the British Medical Journal) posted an announcement that it would no longer publish papers from authors with financial ties to industry with the aim of eliminating harmful bias from published articles. I’ve since talked to some researchers who quickly pointed out that everyone has biases, so eliminating financial conflicts of interest will not result in objective research free from fraud or manipulation, and I agree with them on that point. [Note, a response from Fiona Godlee clarifies this policy: “The policy applies only to editorials and clinical education articles designed to guide patient care and does not extend to other types of article published in The BMJ.” updated 1/14/15.]

As far as I know, Gregor Mendel had no financial conflicts of interest, but his data proved Pharmaceutical-cartonhis theory of genetics perfectly—too perfectly, almost everyone agrees, to be true (see a brief discussion here). Paradoxically, Mendel seems to have cleaned up his data in order to help promote his theory, which happened to be true, so he used untruth to promulgate truth. Other researchers have let their biases affect them more nefariously, letting sexism and racism cloud their ability to form accurate or even coherent theories of health, intelligence, or moral agency.

But the goal of science has always been for an objective pursuit of truth free from emotional bias. Philosopher Alison M. Jaggar made a compelling argument that no scientific inquiry is value free or separate from emotion. She argues, on the contrary, that emotion is a necessary part of any pursuit of knowledge. “Disinterested inquiry,” she says, “Is an impossible dream.” (See “Love and Knowledge: Emotion in Feminist Epistemology.”) A scientific researcher with no bias and no values is both impossible and undesirable, I agree, but it is one thing to have a socially constructed bias and another to have a financially constructed bias. Being paid to have a bias raises a whole new set of problems.

I don’t mean to suggest that pharmaceutical or biotechnology companies should be prohibited from hiring scientific researchers or even that those researchers should be prohibited from publishing in scientific journals. They should, of course, have adequate oversight to detect and prevent fraud, but I’m sure many great products in medicine and elsewhere have resulted from an unbridled pursuit of profit.

The problem is that we don’t have enough independent researchers to ensure a robust search for solutions to human problems that may not lead to profit. Further, we don’t have enough independent researchers to prevent harm from flawed conclusions that may, in fact, generate a profit in spite of their flaws at great risk to public health.

We need publicly funded research centers or anonymously funded research centers where researchers can pursue knowledge that may or may not be convenient for corporations. These researchers would be freer to publish negative results of “promising” treatments. They would be freer to pursue treatments that may be effective but less profitable. As anyone familiar with this problem is aware, it is far more profitable to market maintenance treatments than treatments that will actually cure any given medical condition. Imagine if public funding were also used to manufacture inexpensive and effective cures rather than expensive and less effective treatments.

Of course, this is not the direction the United States (or the world, really) is heading. Rather, we have now entered the age of “venture philanthropy.” (Read Llewellyn Hinkes-Jones’ piece in the New York Times. ) Venture philanthropy enables foundations to use tax-exempt donations to invest in for-profit companies. Rather than using public funds to ensure research free from financial conflicts, venture philanthropy uses public funds to develop and market new products. As Hinkes-Jones puts it, “If the intent is to cure rare diseases, then we should be increasing the budget for the National Institutes of Health and other research initiatives. Instead of gala balls and donor drives, higher taxes on the same rich benefactors could be used to fund the research that isn’t already being supported.”

When the BMJ announced it would no longer publish pieces by authors with industry ties, one chilling line from the article leapt out at me: “In some fields—for example, obesity medicine, genetics, and rheumatology—we may find it difficult to recruit authors free of relevant financial links with industry. It might even prove impossible.” Somehow, we must find the will to make it possible for researchers to make a living and publish their findings without joining the payroll of for-profit corporations. I do not believe all researchers are motivated only by the opportunity to accumulate wealth. Jonas Salk passed the opportunity to amass great wealth with the polio vaccine. Others deserve the chance to do the same.