bioethics

Essay: A Non-Capitalist Approach to Biomedical Consent

R. Horton

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.

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Poem: To All The Young Queers

R. Horton4 Comments

When the police made a routine visit
Next door, they arrived in full-body
Hazmat suits, as unneeded as they
Were insulting. It wasn’t AIDS then;
It was GRID (Gay-Related Immune
Deficiency). Well-educated people
Actually believed just being gay
Would kill you, and the police seemed
To have a database of everyone with
The Gay Plague. Actually, they just had a
Database of their own prejudice and
Paranoia. And we watched in horror
As they spread indignity like butter on
Toast, fear and hatred choking their arteries.

Of my neighbors, Roger went first.
He was already sick when I met him,
And I never had the opportunity to know
Him. Mark was still working, though he had
Some early signs of sarcoma, so his future
Was already written. His partner, Don, appeared
Healthy. He was a landscape designer, responsible
For the most striking gardens of Houston’s
Most prominent residents, a celebrity gardener,
Treated like sewage by Houston’s finest.

When Mark died, his family showed up at Don’s
House to clear out their son’s belongings. They
Gave nothing to their son in life, but took
Everything in his death. Don had a right to nothing
But loss, shame, and seemingly infinite grief.
And Mark’s memorial service was just another
That week. Another loss and another step to an
Inevitable conclusion for the survivors.

That’s how it was, see? Calendars were not
Marked with birthdays, parties, and holiday
Trips. They were filled with funerals, memorials
Medical screenings, blood tests, hospital visits,
Learning the vernacular of T-Cells and viral loads,
And no fucking time left to just sit down and cry.
Grief was a luxury no one could afford, and
Activism was a necessity no one could ignore.

They say the community came together, but it
Was forced together by hatred, fear, and indifference.
When you hear public officials say the solution to AIDS
Is to “shoot the queers,” you bury your friends and lovers,
Cry and scream, and come together to Act Up. We went from
Being gay, lesbian, bi, and trans to being a Queer Nation.
We argued about what words, what language, would work
Best, but we never forgot our common cause: Survival.

adult aged care caucasian
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Don’t bother saving the world

R. Horton

In the grand scheme of things, worlds, suns, and other fabulous celestial bodies come and go all the time, so the loss of one more wouldn’t really make any difference at all, so you can relax. And, the Earth isn’t really under any serious existential threat at the moment, anyway. I mean, it’s getting warmer, but planets do that from time to time. It quite literally is not the end of the world. Hear George Carlin explain here.

[youtube https://www.youtube.com/watch?v=VNxNgfVzAvo&w=560&h=315]The world will go on for some time, I would imagine, unless it collides with something or some other heretofore unimagined accident occurs. I mean, I guess it is possible the Earth will spontaneously break up into tiny particles and become another ring around Saturn, but the chances of that seem infinitesimally small.

But you’re still worried about the state of the world (aren’t you?) because you’re selfish. Only you don’t think you’re being selfish. You’re just worried about all the pretty flowers, the coral reefs, the poor people in other countries, and the cute animals that will disappear, severely affecting your enjoyment of travel documentaries. To be fair, if the plants and animals on the Earth are capable of wishing anything about you at all, I’m sure they do wish you would either go away or at least clean up your mess, so the anti-litter campaign is probably well received by the non-human inhabitants of the planet.

Somewhere deep down, you must fear that if the world ends, or even just changes slightly, you might also end and leave the world to fight for itself, which it could certainly do better without you, anyway. So, let’s face it, you’re really just fighting for your own survival. Don’t worry, you’ve got this. Humans always seem to find a solution to every problem.

Most inhabitants of the Earth are congregated near large bodies of water such as oceans. If the sea levels rise, you’re thinking you may have to move further inland. It might help a little. The folks who already live inland will most likely welcome you with open arms and give you plenty of food and fresh water as most people have already proven to be extremely concerned about the plight of immigrants and refugees.

Your arrival in the new place isn’t likely to cause too much disruption. They may have to expand the hospital a little, but it shouldn’t take too long. Tax revenue is sure to be increasing, so building more roads, schools, power plants, water processing centers, and so on will be easy enough.

As people like yourself travel around, you will carry germs with you. Things you may have become accustomed to may or may not cause problems for your new neighbors. It’s possible everyone will stay healthy. Of course, animals will also be moving and changing their migration patterns, but that should be all right. It’s not like anyone has ever gotten a serious disease from animals. I mean, whoever heard of bird flu or pig flu or anything like that? It’s absurd.

And no one worries about plagues, anymore, because they haven’t happened in a long time. The viruses that caused great epidemics in the past are long dormant. Who could imagine them being reintroduced into human society as a result of thawing ice or something? Preposterous. New bacteria aren’t likely to emerge, either, as we’ve already dealt with them. Scientists these days develop vaccines and new antibiotics at the drop of a hat. Infectious diseases are simply no longer a matter of concern. It’s hard to imagine a pandemic wiping out billions of people, certainly. That kind of thing doesn’t happen where you’ll be living.

As you travel, you may meet fellow travelers moving away from wildfires, drought, inland flooding, failed crops, and so on. Everyone will be understanding and work together to divide the available food as equitably as possible. The police and military might be called in to help smooth over any disagreements. You may see a few skirmishes crossing borders and so forth, but new drones and fortified structures will offer substantial protection to the good immigrants, like yourself. The people who die in conflict should have been more careful.

It’s possible extreme conditions could lead to occasional power failures, which might impact travel and communication. Some flights may be grounded. Some traffic signals might not work as expected. I guess there is a slight chance it will affect rail transportation. Navigation might be a little difficult. If you have a good signal, you can upload a funny meme about it. I mean, really, global warming shouldn’t affect satellite communication, should it? It’s not like airport runways could get too hot for planes to land, rail could warp under extreme heat, or roads could become impassable from melting or buckling. That kind of thing only happens in movies.

So don’t worry about the old Earth. She’ll keep spinning as long as she is destined to, with or without you. And don’t be too concerned about yourself, either. You’ve survived this far. Surely your good luck will continue. It’s a shame about the animals going extinct, though, and the poor people who have lost their homes. And you’ll always have your memories of how things were.

 

Climate Catastrophe: Pandemic and Pestilence (#poem)

R. Horton

skull-208586_1920Epidemiologists and public health ethicists have been grappling for some time with the near certainly of widespread disease pandemics resulting from climate change. Changes in non-human animal migration and human migration will bring extant pathogens to new populations as warming releases long dormant pathogens on the world once again. Large swaths of the population could be wiped out in an incredibly short amount of time. Addressing climate change isn’t a matter of preserving the beauty of the plant. Rather, it is a matter of promoting human survival.

A dying planet is a
Planet that kills.
Rising temperatures raise
The spectre of pestilence
In the form of pathogens
Newly released on
Unsuspecting vectors
As other pests breed
Vociferously and march
Into new territories
In a murderous stampede.

The migration of
Pests and pestilence brings
Pandemic and pandemonium.
Rising waters drive life from
Coasts as rising temperatures
Dry the plains; bake the deserts.
Human refuse scatters into
Constant conflict, seeking refuge
Away from the water or away
From the drought, the ice, the disease.

The oceans killed the fish,
And the sun killed the crops.
Infrastructure fails,
Transportation halts,
Medical care is a memory,
And society is preserved
Only in bits and bytes
Scattered to the sands.

The few who remain
May be resilient enough
To restart the madness.

Pain in the Membrane (frivolous essay on the brain)

R. Horton

They say the pain is all in your head, but where else could it be? I mean, some people do complain of pain in their hands or elbows or knees or whatever, but really the experience of the pain is in their heads as a matter of perception. That’s why some people can claim to have pains in hands or legs that don’t exist. Or exist separated from phrenologythe rest of the body. The pain is in the head, or really the mind, which is probably in the head.

At least we think of our thoughts as being in our heads. When someone does something crazy, we say, “What got into your head?” or something like that. And our thoughts really do seem to be in our heads, except when they are thoughts of the pain that is in our feet after a long day of standing—or maybe the pain of anxiety.

Or the head might not have that much to do with it. Maybe thoughts and pains are in the mind, but the mind is nowhere near the head. Stranger things have happened. I mean, no one doing brain surgery ever found a mind sitting in a skull. You just find brains and stuff in there. And fancy brain scans give colorful and delightful images of brain activity, but not too much info on where the mind is. Pretty interesting things brains are, maybe interesting enough to make minds, but who knows? Honestly, the question never crossed my mind before (this is an obvious lie).

As a young philosophy student, a professor asked if I thought the mind was in the brain. I answered affirmatively. He asked why I thought that, because that is what philosophy professors do. I’m embarrassed to say I answered in a way that seems typical of young men—with a violent example. I said that if you smashed someone’s skull with a steel bat you would witness significant degradation to that person’s state of mind.

Without relying on violent examples, you have to admit that it is often hard to see a mind capable of pure reason in a person whose brain is seriously damaged. Brains really seem important to this discussion, you know? So perhaps all pain is in the head because all pain is in the brain, but what of my arthritic hands? Surely something in my hands is related to the pain in my brain (or my mind for the people still holding out hope for that).

When someone says the pain is all in your head they mean it is in your head and does not correspond to any injury outside of your head (you know, like a stubbed toe or something). The pain is in your brain and nowhere else. Some doctors, of course, will think this fact is enough to justify denying your pain all together and, more importantly, denying you any treatment for your pain. Because of that, your pain gets no sympathy, no consideration, no attention, or anything.

And that creates a pain in your heart, and by that I mean an emotional pain. We say emotional pain is in the heart, partly because our chests often hurt when we feel emotional pain, but I think emotional pain is also in the brain or the mind, wherever it is. Pharmaceutical companies seem to agree; antidepressants aren’t heart medications, are they?

No matter where the pain is, it is most definitely real, even if we can’t be sure the mind is real. You know the pain is real because it is hurting you, and you can’t be wrong about whether you are hurting. Show me where the pain is in your body.

Impossible. The pain just is. The pain is part of the universal pain. The pain is in stardust. The pain is free-floating. The pain is in the neurons. The pain is in the gluons. You are hurting. I share your pain. We are real. Suffering is infinite, and it is all in the mind.

 

 

Uses and Abuses of Autonomy

R. Horton1 Comment

If you’ve studied bioethics, you know that the principles of bioethics are autonomy, beneficence, non-maleficence, and justice. You also know that autonomy, especially in the early days, got most of the press. I was one of the people who saw bioethics and autonomyethics generally, really, as a matter of respecting autonomy. And I still think it is typically wrong to do things to people that they wouldn’t reasonably want done.

As it often happens when changing points of view, I first began to question the value of autonomy in the most extreme cases—those where someone had no autonomy at all. How do you show the proper respect to a cadaver for example? How should we go about respecting the autonomy of someone who is no longer conscious and may never regain consciousness? It seems that showing respect for a person’s life may not always mean respecting the person’s autonomy.

Even in those cases, though, we still try to preserve the notion of autonomy by calculating what would have been correct for that person if that person were a conscious being with autonomy. To what would a rational person want or be entitled? And here is a bit of muddy water already. Kant described respect for autonomy as respect for universal laws, not respect for individual wishes, for respecting someone’s wishes might only be to help them use themselves as a means (see: physician-assisted suicide). For Kant, respect for autonomy would mean that no one could morally choose to die, so certainly no one could morally help someone to die.

But we don’t adhere to Kant so closely, do we? So, respecting someone’s autonomy has come to mean respecting that person’s wishes by getting their consent before doing anything to them or not doing anything to them, as the case may be. But even having someone’s full-throated consent does not make it okay to do whatever we please, and we mostly recognize that. We have laws against doing things to children, for example, or to people with limited cognitive abilities because we recognize that some people are extremely vulnerable to exploitation.

We spend a lot of time trying to identify vulnerable populations, but my problem comes with trying to figure out who might not be subject to exploitation. It seems to me that even the most mature and intelligent people in the world are subject to exploitation at least some of the time. I can think of many examples, but one example is certainly whenever anyone gets sick.

I would say that anyone with even a minor illness has lost a degree of freedom. If I have something as simple as a stuffy nose, I will make decisions I would otherwise not make. You know, I may decide to give money to some stranger who promises that some chemical or other might make my breathing easier. If I will give away my money to avoid slightly congested breathing that will likely correct itself in a short time, what might I do to avoid rapidly approaching death?

If I’m frightened enough of dying, and most of us do want to avoid an early death, I might agree to almost any treatment dangled in front of me, and I might go to extreme measures to procure the treatment. Getting my consent to give me my only chance of relief seems a little strange, which is why neither healthcare providers nor their clients pay much attention to the whole informed consent process in routine cases. We generally go to healthcare providers with the intention of making use of the services they provide.

Yes, I know patients do need the information that makes up the “informed” part of informed consent, and sometimes genuine decisions must be made in collaboration with the doctor or other caregiver. Even in those cases where decisions must be made, most patients assume the doctor is in a better position to know what choice is best. Which is why so many of us respond with, “What would you do, Doctor?”

What we don’t say, though, is, “No, I don’t want any treatment. I only came in because I had a bit of free time and thought I’d spend it in an examining room.” It is only suffering, whether minor or extreme, that drives us to see a doctor. And it is that suffering that makes us vulnerable to exploitation, and that vulnerability renders the concept of free consent or undiminished autonomy questionable.

So I don’t think autonomy can shoulder the moral burden it is expected to carry. In fact, autonomy may not mean anything useful at all. Respecting a person’s wishes, especially in situations where wishes are so easily manipulated, may not be of any moral value at all.

In US, Illness is Financial Anxiety

R. Horton

In August 2016, I moved from Texas to the northwest of England. Last summer, I while walking in the local park I slipped on a stepping stone and sprained my ankle. As the pain pulsed through my body and my ankle began to swell, I began to wonder whether I needed an ambulance, an x-ray, or possibly even surgery.

I did not think about the cost of an ambulance or whether my insurance might refuse to pay for it, the cost of an x-ray if needed, the price of surgery, or even co-pays for medication or any possible treatments. I was worried only about my condition and getting better.

I enjoy hiking, cycling, dirt bike riding and other sports with risk of injury, so I’m not unaccustomed to dealing with the occasional injury. With similar injuries in the United States, though, I always thought immediately of the cost. Mind you, I was never uninsured, but even with insurance proved by the college where I taught, a shattered tibial plateau in 2001 that required two surgeries and months of physical therapy left me with surmountable but daunting bills long after I had recovered. Since 2001, prices have risen dramatically along with higher deductibles, narrower networks, and higher copays for treatment.

In the United States, illness or injury means an immediate calculation of costs and threats to financial security even for working people securely in the middle class. For others, the situation is much worse. Of course, long-term illness or injury can throw middle-class workers out of work, which means they will lose their insurance, unless they can afford COBRA payments to maintain their insurance for a limited time after employment. In my experience, COBRA payments are much higher than people expect or are able to pay.

As a student in medical humanities, I read many narratives of illness. They all focused on suffering from the condition, facing mortality, finding or making meaning in the face of prolonged pain, but not so much about what truly horrifies Americans when they fall ill. Illness or injury should be a time to focus on healing, if possible, or confronting or preparing for prolonged pain in the case of a chronic condition, or to prepare for death in the case of terminal illnesses. It should not be a time to worry about financial ruin for oneself and one’s family.

The study of medical ethics offers many opportunities to contemplate challenging philosophical problems with rich and varied intellectual interest. However, access to healthcare is by far the most pressing problem in the United States. Anyone concerned about illness, suffering, and medicine must assume the obligation to relieve the suffering created by unaffordable healthcare.

 

 

Payment as Coercion: Researchers Versus Research Participants

R. Horton

In the world of medical research, ethicists say it is unethical to pay a substantial amount of money to research participants. If you give a hefty sum for participation, people might sign up for risky research that they would otherwise avoid, so they can only receive minimal compensation for their time. Large payments exploit them and violate their autonomy by removing their ability to refuse participation. Of course, people with little money and few resources will sign up for risky experiments, anyway, because they need the money, even if the sum is paltry. Poverty reduces one’s autonomy and makes one ripe for exploitation, unfortunately.

The other way to look at it, of course, is that individuals are participating in research that may yield lucrative products, may cause unpleasant or harmful side effects, and may be quite inconvenient, indeed. For loaning their bodies to this unpredictable, but likely profitable, enterprise, it might make sense to compensate them more generously for their time and willingness to risk their own health. After all, it is common for workers who engage in other types of risky work to be compensated above normal pay scale. So, I say the industries should compensate their research participants in ways that are commensurate with the risk and inconvenience they are accepting.

Finally, if payment is coercive for research participants, surely it is coercive for researchers as well. Even workers with six-figure salaries can be exploited and manipulated with large sums of money and other favors. Without large payments, doctors and researchers might well be doing the work they are doing, but surely large payments (much larger than any research participant ever gets) must compel them to conduct their research in ways they would not in the absence of such large payments. We might say they have, in effect, had their autonomy stripped from them through coercive payments.

And so it goes.