Everybody’s Talking About Bioethics Now #COVID19

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Since this pandemic got rolling, it seems everyone wants to talk about bioethics “trolley problem” quandaries like how to decide which of three dying patients gets the one ventilator on hand or whether it is okay to lock up healthy people to prevent the spread of a deadly virus. All the boring stuff suddenly got real and real fast, but maybe it’s not that interesting.

You should give the ventilators to the people with the best chance of surviving, right? I think that is how triage works. And, oh, was it all right to tell people to turn off their lights when bombers were flying overhead in the middle of the night? Sometimes even the rugged individualists have to work as a group. The problem is that some of our rugged individualists have never really been put in a position to make tough decisions, so they aren’t prepared.

And that gets us to the real ethical issues here. It is really unethical to be unprepared for emergencies. Experts in many fields have been warning of coming pandemics for at least 15 years. Even George. W. Bush, bless his tiny heart, knew he had to prepare for pandemics, and he at least took at stab at it. And the ever financially minded Barack Obama prepared for pandemics and even dealt with one on his watch. His didn’t get quite so out of hand, of course, and no one should have to tell you why.

So, the important ethical decisions were made years ago, and many of them had to do with the most attention-starved principle of bioethics, justice. The failure to prepare for a public health emergency affects everyone, as we now see, but too many people have always seen efforts to protect public health as efforts to protect “people not like me.” This isn’t always a sign of racism; sometimes it is just pure classism. Some people just don’t hate based on skin color, religion, sexuality, or any of that stuff. They hate poor people of all types.

This is also not a matter of choosing between the “economy” and the needs of working people. Preparing for a pandemic would have meant having mechanisms in place for extensive testing, tracing, and isolation that would have prevented the need to shut down almost all business activities. With proper preparation, the world would have suffered but could continue functioning.

And I guess a lot of Americans really were satisfied with their employer-provided health insurance that they are now losing, because it turns out their employers really never valued them as much as they assumed. It would seem that intelligent and hard working people should always be able to get healthcare, and that’s what we’ve been trying to tell you. You can be hardworking and intelligent and also poor, and maybe it is good that more people are learning this rather difficult lesson right now. Maybe it will help in the future.

But public health isn’t all about health insurance, though turning infected people away from a hospital because they can’t pay is certainly not a good way to protect the public from a pandemic. No, protecting the public health, which is really protecting national security (and global security) is about being able to deal with emergencies, which would require not selling off all the equipment you might need. Most homeowners have never used a fire extinguisher, but the ones who used them successfully were pretty happy they had invested in buying one and taken the time to learn how to use it.

So, yes, more than a decade ago, epidemiologists, virologists, climate scientists, public health experts, public health ethicists, and environmentalists were warning that the world was becoming much more hostile. How do we prepare to ensure our own long-term survival isn’t really as much fun as debating who gets the last ventilator, maybe, but it can save many more lives.

And maybe you’re saying there’s no point in going on about this now as it’s too late. What’s done is done, you’re saying, but this ain’t over, folks. One way or the other, COVID19 will be resolved, but other pandemics will follow along with drought, flooding, mass migrations, and a host of other public health crises that aren’t that hard to imagine if you only try. You may think I’m crazy, but I’m not the only one. Plenty of experts in relevant fields are already imagining the worst and best case scenarios. Maybe it’s time to listen to them.

Pandemics, Climate Change and the Threat of Innumeracy

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Among other things, this pandemic has shown the danger of innumeracy. Over the past few weeks, many have tried to minimise the effects of the pandemic by posting blogs and memes listing absolutely accurate statistics that are also terrifying to the specialists tracking the number of infections. Just for example, many people said a fatality rate of 2.0 (or even 1.0) was about the same as that for influenza. Of course, a fatality rate of 2.0, would be 20 times as bad as the seasonal flu, and even 1.0 would be tens times as bad.

Among those posting information to minimise the effect of the pandemic were healthcare providers, including doctors who work with infectious diseases. Doctors trained in medicine and not risk assessment are not better at assessing risk and probabilities than the general population. The 1982 book, Judgment Under Uncertainty: Heuristics and Biases, edited by Daniel Kahneman, Amos Tversky, and Paul Slovic, examined the ability of people, with several chapters devoted to medical professionals including doctors, to assess risk based on probabilities. People in general, including doctors, just aren’t that good at it.

Subsequent research in medicine has shown similar results. Without specific training in assessing risk based on statistics and probabilities, doctors are no better than the general public at making decisions. We all need a more robust understanding of statistics, probabilities, and risk assessment.

It would help us better understand the risk of pandemics, and it may help us better understand the risk posed by climate change. Many people still think it isn’t a big deal to have the average global temperature increase by 1 degree.

Essay: A Non-Capitalist Approach to Biomedical Consent

Ask anybody about bioethics in the old days, like forty years ago, and they’ll talk all about autonomy and consent. It was all about how people didn’t have to do what you thought was good for them and how you couldn’t touch patients, even to help them, without it being some kind of battery or something. Everybody talked about all these famous examples where people were treated without wanting to, but most people only go to the doctor when they want and need to get treated. Most people these days only refuse treatment because they can’t afford it.

I’m sure a lot of them can’t afford the treatment but also don’t need it. It’s hard to argue with a doctor about that, though. If you want to feel better, stay healthy, live longer, or whatever; you’re going to listen to the doctor. You are paying the doctor to know more about it than you do. And the doctor may or may not be making money off every service you buy. It’d be good to know who makes money off what, wouldn’t it? It would also be good to know in advance exactly what everything would cost. It would be even better to be able to prepare costs.

In the early days of bioethics, it wasn’t all about costs, because most people could afford their healthcare bills. Money was a concern, of course, but people didn’t panic from fear that their life savings would be wiped out anytime they got sick. It wasn’t at the front of everyone’s mind, so when someone refused treatment, it was because they didn’t want to live longer, didn’t think the treatment worked, or something like that.

But now it’s all about costs. Can a doctor ethically prescribe you treatment knowing you can’t afford it? Can a doctor ethically not tell you about treatments you can’t afford? Should doctors help patients set up Go Fund Me accounts? How can anyone just stand by and let people die because they can’t afford insulin?

In the past, we didn’t notice how much autonomy and consent were tangled up in financial concerns. Most patients didn’t know doctors received so much money from industry. Most patients trusted their doctors, hospitals, and so on to have their best interests in mind, not to be focused on profit front and center. But things have changed, and bioethics can’t afford to have many debates that don’t deal with patients’ ability to access needed care.

So, if you are dealing with public health ethics and planning for pandemics, you might want to consider how many patients will walk around shedding viruses simply because they can’t pay for a visit to the hospital. And if people are forced into quarantine at hospitals, you might want to consider who will get the bill for that. It’s the same with vaccines. At least some people are opposed to vaccines because they think, right or wrong, that they are just being made to create more profit for pharmacy companies, clinics, and doctors. It’s just another way, they think, to get in people’s pockets.

I’m not saying that no one writing in bioethics is dealing with these topics. Great work is being done. What I’m saying is that all work in bioethics must include a discussion of economics and an expressed concern for how access to medicine can be guaranteed for everyone who needs it. You can have lots of detailed and technical disagreements over how much medicine is actually needed and what are the best ways to deliver needed medicine without bankrupting an entire country, but the focus should be on creating a society of healthy, financially secure people. That’s all anyone wants, I think, and anyone who doesn’t want it isn’t really worth my trouble.

adult doctor girl healthcare
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Dangers of Anthropomorphism in Medicine (#poem)

chimpanzee sitting on gray stone in closeup photography during daytime
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It is most important, he said, to never
Ascribe to your subjects the feelings,
Intentions, and desires of humans.

You must make assiduous reports
Of behavior devoid of motive or
Explanation. The maternal adult screamed

But never wailed in sorrow, for
We cannot assume she is capable
Of sorrow. We cannot assume

Her frantic clamoring expresses
Either desperation or lamentation for
The infant stolen from her hours before.

We cannot assume she feels what
Humans feel or, indeed, is capable
Of thoughts or intentions at all.

But do remember that our work
Is important, as these specimens
Are perfect subjects for the study

Of human medicine. Their biology
And neurology is so similar to human
Biology that we can safely assume

That any treatments developed
For them will have similar effects
On their human counterparts.

What is safe for your subjects
Will be safe and beneficial for
Humans. Any deleterious effects

Must be recorded, of course,
As you have an obligation to humanity.
Your aim is to improve human well-being.

Review: John Gluck’s Voracious Science and Vulnerable Animals

The entire medical research enterprise is built on a foundation of intense and immense animal suffering. Most of the effective treatments we have now were previously tested on non-human animals before they were ever used on humans. On the other hand, most non-human animal research does not lead to an effective treatment or even publishable results.

In Voracious Science and Vulnerable Animals: A Primate Scientist’s Ethical Journey, John Gluck describes his glacially slow transition from primate researcher to animal welfare advocate. Early in his career, Gluck worked on the infamous monkey social-isolation experiments that provided the earth-shattering news that separating infants from their mothers and rearing them in isolation harms their emotional and intellectual development. Thanks to img_0327this ground-breaking research, mothers have learned not to raise their babies in small wire cages and occasionally perform painful surgeries on them.

In approximately the same amount of time it took for humans to evolve from other species, Gluck began to realize the great harm he was causing to his beloved monkeys. Gluck apprehended the harm he was doing after personally observing the excruciating suffering of the animals he was studying, seeing the shock in the eyes of non-scientists when he described his work and realizing that he could only describe his work to fellow scientists, having a student present him with Peter Singer’s accurate description of his work, having his lab broken into by animal rights activist, and, finally, talking with philosophers about the rights of animals.

The brilliance of his account is that he illustrates why it was so difficult for him to acknowledge the pain he was causing and why it is next to impossible to engage animal researchers in a debate over the welfare of research animals. Typically, animal researchers say they turn to non-human animals when it would be unethical to test on humans. When pressed, they will agree that animals should be used only when their use benefits the pursuit of scientific knowledge, should be given clean living quarters, should be fed appropriately, and should be given medical treatment when needed. Unless, of course, the scientist is studying the effects of food deprivation, lack of medical treatment, and so on.

The research is further justified by the fact that non-human animals have similar biological and neurological structures that ensure that results in non-human animals can be replicated in human animals. The human who doubts the similarity is scoffed at for being scientifically illiterate. Paradoxically, suggesting that non-human animals, similar to humans in other ways, are also similar to humans in terms of suffering or moral importance is accused of anthropomorphism. The argument is either that animals are not capable of suffering in any meaningful way or that their suffering is of no moral significance.

Gluck describes these arguments and explains that he himself held such seemingly contradictory views because they are taught and repeated ad nauseam until they become ingrained beginning with undergraduate study. Anyone who questions these basic beliefs is either met with laughter or denied entry and participation in research programs. People within the system become so closed off from contrary opinions that they are often surprised when descriptions of their work shocks and offends outsiders. The only explanation for the outrage many scientists will consider is that outsiders cannot understand the importance of their work.

One of the more fascinating events that led to Gluck’s change of heart concerned a human patient who was thought to be severely cognitively impaired. Staff in the patient’s room talked about the woman as if she were an object. Gluck was trying to solve a particular problem. At times, staff could feed the woman from a spoon but at other times she could not swallow. It turned out that she could swallow but was refusing to because she did not appreciate the way certain staff treated her. It was the only form of protest she had at her disposal. When Gluck realized how robust the conscious life of this patient was despite the appearance of minimal cognitive activity, he realized also that he could not say with certainty what thoughts, beliefs, or emotions non-human animals might experience.

Gluck eventually decided to get out of animal research and began teaching courses on research ethics that covered a variety of topics but included discussions of animal welfare. (If you care about the suffering of the animals in his lab, you will be disappointed by what happened to them.) Gluck’s educational programs on research ethics were successful in the sense that they attracted students from a myriad of disciplines and engaged both students and faculty in interesting and enlightening debate on the use of both human and non-human animals in research. Looking back, he is proud of his accomplishment to begin these discussions but admits that animal researchers were the one group that never engaged in the discussions.

Ethicists can attempt to change practices from inside or outside of institutions. Outsider ethicists have more freedom to make bold declarations of misconduct, express outrage, and threaten established practices. Insider ethicists have greater access and opportunity to speak directly with the people who have the power to change practices. Both kinds of ethicists are needed. Gluck is an insider whose thoughts and arguments were enhanced and supported by outsider ethicists. He says he was unable to effect a great deal of change inside research labs, but he was able to speak to researchers as an equal to engage in an ethical discussion. Sadly, insider ethicists who raise ethical alarms are often forced outside. It takes a great deal of courage to risk losing a privileged position inside the castle, and it also takes a great deal of courage to storm the castle gates.

If you are looking for a book with a detailed and comprehensive review of philosophical theory related to animals, you will be disappointed in Voracious Science and Vulnerable Animals; however, if you are looking for an insider’s perspective on the views and outlook of animal researchers, you will find Gluck’s insights and introspection fascinating, even if depressing. The book shows that it possible for researchers to be moved and gain compassion and understanding of the harm they are doing, but it also shows that such progress is slow and infrequent.

 

 

 

 

Our Bodies, Ourselves and the birth of bioethics

The first works of academic bioethics I read were by notables such as Peter Singer, James Rachels, and Bonnie Steinbock, but that is not where my interest in bioethics actually began. In the 1980s, I ran across the book, Our Bodies, Ourselves, and I was immediately captivated by the book and the movement it represented, even if I wasn’t part of the particular movement.

The book began as an outgrowth of the feminist movement when 12 women met in 1969 to discuss their experiences with doctors. They began compiling and disseminating their stories and information to empower women to take charge of their own healthcare decisions. Bioethics as a professional field developed in the 1970s, but the authors of Our Bodies, Ourselves were ahead of professional bioethicists by a few years. In 1970, these authors released a booklet titled “Women and Their Bodies.” While professional bioethicists focused on the role of autonomy in healthcare, these women were creating autonomy by giving women information and the courage to take charge of their own healthcare. You can read more about the history here.

At the time these women met, abortion was illegal and most doctors were male. As the authors explained in the preface to the first edition of the book, “we wanted to do something about those doctors who were condescending, paternalistic, judgmental and noninformative.” To combat the attitudes they found common in doctors, they presented information on birth control, abortion, menstruation, masturbation, and sexuality in frank and shame-free language. As a outcome of the approach, they said, “Our image of ourselves is on a firmer base, we can be better friends and better lovers, better people, more self-confident, more autonomous, stronger and more whole.”

Our Bodies, Ourselves, the book, continues to be published (now in more than two-dozen languages), and the organization, Our Bodies Ourselves (OBOS), continues as a nonprofit organization promulgating information on girls’ and women’s health and sexuality. Their efforts now extend globally through the Our Bodies Ourselves Global Initiative (OBOGI).

These women approached bioethics from the ground up and changed the world.

This is how I feel bioethics should be conducted for the greatest impact. Patients, ideally, should drive the focus of bioethics and inform both ethicists and healthcare providers of what issues are important. The only way for this to happen is for patients to tell their stories of how they experienced healthcare, medicine, illness, and even death.

To that end, I am inviting patients to submit their own stories of illness and medicine to Ethics Beyond Compliance. If you would like to submit a story related to your experience of illness (either as a patient or as a caregiver) or grief, please send it to me. I will have a story coming up in the next few days, but I hope to make it a regular feature of the blog.

See also: O is for Our Bodies, Ourselves

Thought experiment: Financial Conflicts of Interest

Believe it or not, many people see no problem with financial conflicts of interest in health care. People who receive payments say they are only doing the same job they would do otherwise, except with more resources. This, they say, enables them to provide better health care. People who make the payments will claim that they are only trying to ensure that their beneficial products are able to improve the lives of as many consumers as possible. Even patients defend conflicts, saying they don’t mind their doctors making a few extra dollars in order to provide efficient, state-of-the-art service. Patients see these financial ties as a way to ensure groundbreaking treatments reach consumers.

Slippery Slope
A rather beautiful example of a slippery slope.

I’m not a doctor, but there are analogies for me. If we look at financial ties in another industry, it may be easier to see the problem. In education, the stakes are lower, but some parallels to the medical industry remain. I will begin with actual practices and then ask you to imagine further practices that parallel the medical industry.

First, instructors are commonly asked to review books for publishers seeking feedback on manuscripts or new textbooks. This gives the publisher an opportunity to get feedback from potential customers while also enabling instructors to provide input to publishers. Instructors get better books, and publishers are able to improve both their products and their marketing. The instructor is, of course, paid a small honorarium for the time invested in reading and reviewing the book.

Second, once instructors have given feedback, publishers may invite them to be more involved in the production of the textbook. They may be asked to write an instructor’s manual to accompany the text or participate in developing workbooks or online supporting materials for students. (Disclosure: I know that these first two items are practiced because I have reviewed textbooks and written an instructor’s manual for pay.) Instructors, of course, know the most about what instructors need and how students may use various materials. Improving the product benefits publishers, instructors, and students.

Now, imagine that an instructor sees an improvement in students’ success rates and general aptitude. The instructor begins to collect data and may even present at a teaching and learning conference on how these materials have benefited students. A publisher might (I don’t know of this happening in real life) offer to pay the instructor to give the same presentation at additional conferences. On the surface, this does not seem harmful. After all, the students really did improve using these materials, and the presentation was not developed with the aim of getting payouts from the publisher. Certainly, no students will be harmed by these presentations.

Finally, imagine this instructor begins to accept regular invitations from the publisher to present on the benefits of the products and encourages others to adopt the same materials for their classes. The instructor notes that most of her or his students are now earning A’s and B’s when the class averages were usually a B or C before the materials were adopted. To reward the instructor for this amazing success, the publisher begins to pay the instructor $100 for each A awarded and $80 for each B awarded. Soon, this instructor is widely hailed for improving student success and completion rates at a college that struggles with generally high rates of failure and incompletion.

Now, these payments to the instructor come to the attention of the student newspaper, which publishes the amounts paid to the instructor and the increase in high grades in the classes. The public is outraged, but enrollments in the class continue to increase. The instructor counters that no one has shown that even one student who received an A did not deserve an A. Further, the instructor says that the improvements in student success were documented even before the payments began. The publisher responds by saying that the materials it produces are of the highest quality and that it is proud of the success rates of the students using the products. Without the relationship between the publisher and instructor, fewer students would have benefited from these outstanding educational materials and that would be a real tragedy.

Questions to consider: 1. Did students really benefit from the relationship? 2. Were cheaper alternative materials available that were equally beneficial? 3. Is it possible that students received inflated grades, even if proving it so is impossible? 4. What would it take to identify this relationship as a moral problem? 5. Are all financial relationships with industry unethical? 6. If not, when does the relationship become unethical?

I think it is extremely rare for someone to go into a job with criminal intent to capitalize on the system and take home as much money as possible regardless of possible harm. No, everyone begins with the best intentions and becomes blinded to the possible effects of their actions. And, precisely because each person has no malevolent intentions, each person feels insulted by even a hint of judgment and defends her or his practices vehemently. Because good people do X or Y, it is easy to think it is impossible that X or Y is a bad thing, especially when we can show that many people have benefited from these practices.

åIt is easy to be blinded by the fog of good intentions and financial influence, and ethicists are not immune. The job of the ethicist is not to be perfect but to be on guard. The job of the ethicists is to constantly strive to get a clear view through the fog and to help others stay on the paved path running alongside that slippery slope.

 

Do all ethicists have a messiah complex?

Last May, Nathan Emmerich wrote a column warning that bioethicists must not become a “priestly caste.”In the column, he warns that giving bioethicists moral authority over all practices in medicine and healthcare will have an anti-democratic effect and hinder public discourse.

He may have overstated the authority that bioethicists generally have, but it is true that some see their job as handing down judgment on various practices in medicine and research while others, frankly, would be happier to just accept the opinion of “experts” in order to avoid having to take full responsibility for their ethical decisions. The ethical expert has arisen because of rising demand. After making a thorny decision, who would not want to be able to say, “My decision was reviewed and approved by experts in ethics”?

Ethicists will do well to resist a priestly role. If you begin to believe that something is morally correct simply because you believe or say that it is, then you should apply for sainthood, not a position as an ethics consultant. When Euthyphro is asked if he knows he is doing the right thing, he replies, “The best of Euthyphro, and that which distinguishes him, Socrates, from other men, is his exact knowledge of all such matters. What should I be good for without it?” Euthyphro considers himself an expert on matters of morality and dismisses any suggestion that his opinions might be challenged. As he attempts to explain himself, his logic breaks down. Ethicists as experts would do well to open themselves to challenges from all corners as Emmerich suggests.

All this is further complicated, though, by Eric Schwitzgebel’s finding that ethicists are no more ethical than non-ethicists. Comparing ethicists and other professors, Schwitzgebel and his colleague, Joshua Rust, found that both ethicists and their colleagues reported that the ethicists were no more ethical than their colleagues. This is not terribly surprising. I may think I am a pretty ethical person but not be willing to say my colleagues in metaphysics are a bunch of thieves and charlatans. By the same token, they may think I am pretty ethical but have enough self-respect not to sell themselves short.

Of further harm to the reputation of ethicists, Schwitzgebel says ethics courses do not appear to have much affect on the ethical behavior of students. He notes that many of us who teach ethics do no claim that it will make our students behave more ethically. This is probably true in most philosophy departments, but ethics courses in law schools and business schools, for example, are designed to prevent unethical behavior down the road.

It isn’t likely that any type of ethics course can cause an unethical person to become more ethical, but courses can have an effect on ethical behavior. Courses in specific disciplines can provide a framework for codes of behavior in a particular field such as law, business, psychotherapy, or medicine. Through such courses, students can become well versed in expected norms as well as actual regulations from laws or professional codes of behavior. In addition, students can learn to examine cases and apply accepted principles of their fields to various situations they may encounter during their careers.

Theoretical courses give students a larger ethical toolbox to examine conflicts that arise in their careers and also in their daily lives. Few ethics professors have had students say that, thanks to the ethics class, they have stopped lying and cheating, but most of us have had students tell us that they now see questions in a new light. Rather than simply relying on instinct or prior teaching, students learn new ways to frame ethical problems and new approaches for identifying possible ethical harm. If nothing else, we give the students who are already ethical a greater vocabulary for articulating their actions and beliefs.

With any luck, ethicists, ethics instructors, and students will all leave the class with a bit of humility. The ethicist who believes his or her own hype as a moral authority has passed into dangerous territory. At best, the ethicist has the tools to examine ethical problems with greater detail and nuance. In the end, people eventually have to act, and a thorough ethical analysis can help guide them.

But ethics courses have a greater importance. Imagine a society where no one ever studied or discussed ethical theory or ethical decisions. It is impossible to imagine such as society, I think, because we do have to make decisions, and that requires thinking about them in detail. Some people would always rely on their “gut feeling,” but others would worry and ponder and ruminate. And they might seek the counsel of others who have spent time worrying and pondering and ruminating. And soon we would see the rise of a priestly caste and a separate group of committed but imperfect thinkers devoted to analyzing ethics in both theory and practice. We would make many mistakes, and many people would be hurt, but at least we would be trying.

At least we are trying.

Patients’ Rights Survey

Patients’ Rights Survey

Please take my patients’ rights survey. I am trying to learn about how patients (and potential patients: everyone) feel about informed consent, financial disclosure, medical research, and end-of-life decisions. There are only 20 questions and it is anonymous.

I will be most appreciative of all responses.