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.

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Uses and Abuses of Autonomy

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.

Reid Ewing and the Failure of Autonomy in Bioethics

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.

 

Ethical Codes: Moving beyond autonomy

Ethical theories can be divided in a number of ways, but one easy way is to separate the rule-based theories from theories that are not rule based. If you happen to be writing a code of ethics for your organization, you are going to drift toward rule-based theories because, in fact, you are writing a set of rules. These rules are important to ensure and protect the professionalism of your organization or profession. Ethical codes, made up of rules, establish a system of accountability for your members. Ethical codes are useful and often essential for professional organizations and vocational fields.

The rules in professional codes tend, whether stated or not, to focus on autonomy as begging devildefined by Immanuel Kant. His advice is generally interpreted somewhat loosely to say that we should only do to others what they have chosen to have done to them and use them only in ways that help them achieve their own ends. We should not use others only as a way to achieve our personal goals.

Based on this thinking, we would only provide people with treatment after receiving their fully informed consent, we would use people in our research only if they wanted to participate, and we would always be honest with clients and work in their best interest. Some would be a little shocked by the full implications of Kant’s views. For example, to have sex without the intent to procreate is to use both yourself and your partner as a mere means to pleasure. Lying to a murderer in order to save a child’s life would lead to you being charged with a crime in the event of the child’s death.

When it comes to integrating ethics into your professional practice, however, you may find rule-based systems too limiting and seek a theory that feels more inclusive of your entire professional life. It may help to look at two other groups of ethical theories: 1. Theories that focus on what kind of person to be. 2. Theories that focus on how to relate to others. This isn’t a neat division as these two types of theories overlap in significant ways, but it can be a useful starting point.

Virtue Ethics

Friedrich Nietzsche rejected rule-based systems of morality, which he referred to as forms of “slave-morality,” for morality aimed at character, which he called “master-morality.” He said, “It is obvious that moral value distinctions everywhere are first attributed to people and only later to actions.” For Nietzsche, it is the powerful who will see moral behavior as a by-product of being a great person while the weak will seek moral rules to protect their interests from others. Nietzsche suggests we should all strive to become great people rather than subjecting ourselves to the rules and will of others.

In a similar vein, Aristotle saw morality as a process of becoming a good person rather than following a set of rules, though he did say that things like theft, adultery and murder are always wrong, allowing for the existence of some moral rules. In general, though, a person becomes good, not by following rules, but by developing a virtuous disposition. This approach does emphasize activities, as it is through our actions that we develop our character. By choosing the actions a good person would choose, we become a good person, and by being a good person we tend to choose actions that are also good.

Relational Ethics

If you work with people on a regular basis, you may find a theory based on relationships conducive to moving beyond rule-based systems and ethical codes.

In the past, I didn’t really think of existentialism as a good foundation for a relational ethics as many existentialists focus on subjective experience, but Simone de Beauvoir’s “Ethics of Ambiguity” changed my mind. Beauvoir specifically tackles the problem of making ethical choices in an ambiguous world. Contrary to Immanuel Kant, she says it is not possible to arrive at certain rules to guide our behavior, but this does not mean we can shirk our obligation to act with concern for others.

Beauvoir says we experience life through our own experience by exercising our own freedom, but we do not experience it in isolation. If we do experience it in isolation, she says, “The saving of time and the conquest of leisure have no meaning if we are not moved by the laugh of a child at play. If we do not love life on our own account and through others, it is futile to seek to justify it in any way.” Our authentic self is expressed through free acts, but “[The individual] exists only by transcending himself, and his freedom can be achieved only through the freedom of others. He justifies his existence by a movement which, like freedom, springs from his heart but which leads outside of him.” Though our actions can’t be pinned down by a set of rules, we find meaning in life by seeking, willing, and nurturing the freedom of others in the world. In a sense, our affirmation of freedom is an exclamation of love.

Love may not seem an appropriate emotion to mention in a discussion of ethical relations with clients, but we don’t have to think of it in romantic or sexual terms. Love may be a matter of valuing others. Philosopher Martha Nussbaum argues that love is an essential feature of a liberal democracy. Some might quibble over how she defines love, but certainly it is a concern for others that drives both the ethics and political struggles of some of us. For example, she notes that we all live in a state of dependency at one time or another (childhood, old age if we are lucky to live long enough, and periods of impairment). Some of us live in states of dependency for our entire lives. Protecting the dignity of all requires us to recognize the value in others, and love for others is sufficient motivation to remove the shame and stigma of dependency. Our concern for others motivates our most basic moral impulses.

In this sense, both Beauvoir’s and Nussbaum’s views can be seen as forms of an ethics of care. If you are familiar with care ethics, though, you probably heard of it through the work of feminists such as Carol Gilligan and Nel Noddings. Care ethics was introduced as an alternative to theories seen to value men’s experiences over women’s. Feminists pointed out that women’s experiences have largely centered on care. Some will say caring is natural to women and others will say women have been forced into caring roles.

Over time, care ethics has become somewhat less gendered, meaning both men and women may recognize the value of care in their ethical lives. Noddings says our moral obligations arise between the “one-caring” and the “cared-for.” The response of the “cared-for” drive our actions. The most debilitating kind of existence, she says, is to care for someone who is unable or unwilling to respond to care. Controversially, she says, “We are not obliged to act as one-caring if there is no possibility of completion in the other.” This means are have no obligations to “the needy in the far regions of the earth.” Philosopher James Rachels objects, saying, “A more sensible approach might be to say that the ethical life includes both caring personal relationships and a benevolent concern for people generally.”

Some philosophers see narrative ethics as a logical extension of an ethics of care. Narrative ethics emphasizes the role of stories in our moral lives. Most of us grew up hearing “didactic stories” about foxes and wolves and so forth that left us to learn “the moral of the story.” This is an important feature of narrative ethics but stories need not be didactic to aid our moral reasoning or impulses. We may also learn from both fiction and true personal narratives.

Fiction can help us broaden our imagination of what life is like for others. It helps us to understand feelings and motivations outside our own experience. It gives us a way of testing different points of view and outlooks. Similarly, listening to or reading the accounts people give of their own lives gives us greater insight into their emotional lives and helps us to develop an empathetic response. Our moral obligations and intuitions look quite different when we are better able to “read” the minds and motivations of others. Those who work intimately with clients on a regular basis are immersed in their stories. In this sense, ethics is integral to the practice. I personally think it is helpful to think of ethics as being embedded in our work rather than a separate function that requires attention outside of our “real job.”

Again, autonomy plays an essential role in developing ethical codes of behavior. If we fail to respect the autonomy of others, we violate them in ways that are always wrong and often illegal. Still, other ethical approaches can expand the role of ethics in our practice and help us pursue ethics that really is beyond mere compliance.

The limits of client autonomy in psychotherapy

In the movie, Analyze This, a psychiatrist has to deal with treating a criminal whose anxiety interferes with his ability to do his job, which includes killing people. The movie is a preposterous and rather horrifying scenario, but it doesn’t challenge accepted ethical guidelines on client autonomy—clients do not have a right to request treatment to enable them to harm others. Such demands are well outside of the scope of client autonomy.

While no one (all right, so I can’t promise there is not some sick exception out there) thinks clients should have unlimited autonomy, maximizing autonomy has been particular focus of bioethics since its inception in the 1970s. This, combined with movements in psychotherapy and feminism to empower both clients generally and women in particular, gives way to some perplexing situations. This is particularly true, to my mind, in cases of so-called “internalized oppression.”

In the 1980s, feminist philosopher Dale Spender rejected the idea of singular truths as being too oppressive, claiming instead, “Only within a multidimensional framework is it possible for the analysis and explanation of everyone to avoid the pitfalls of being rejected, of being classified as wrong.” Spender was specifically advocating a multidimensional view of reality as a way of empowering women.

Similarly, collaborative therapy intends to empower clients by rejecting preconceived notions of truth and meaning, or even of therapeutic goals. In her 1997 book, Conversation, Language, and Abilities, Harlene Anderson writes, “A therapist is not a detective who discovers the truth, or what is true or truer, false or falser.” She goes on to say, “A therapist does not control the conversation, for instance, by setting its agenda or moving it in a particular direction of content or outcome. The goal is not to take charge or intervene.”

So, what is to be done with a client who embraces and fails to question a system that is oppressive, hierarchical, and one-dimensional? If a client has embraced a system that devalues the worth of the client, it would seem honorable and right for the therapist to guide the client to question a system that is degrading and demoralizing, rather than helping the client explore ways to function more effectively within that system. Of course, a therapist may simply open a conversation and hope the client with find liberation on his or her own, but this is a disingenuous respect for multiple truths.

Commenting on the goals of multidimensional feminism, Jean Grismshaw said, “The fact that one group has power over and exploits another, cannot be reduced to anyone’s belief that this is so; nor does the fact that someone does not understand their own experience in terms of oppression or exploitation necessarily mean that they are not oppressed or exploited.”

A belief in moral progress entails a conviction that some truths are better than others. We must believe that changing what we believe can make the world better. In Plato’s allegory of the cave, the philosopher who has become enlightened will not want to return to improve the affairs of men, but it is a duty to do so. If those who are in chains do not realize they are in chains, those who are free must help them.

William James, who I believe is one of the greatest psychological theorists of all time, also rejected the certainty of truth, but he noted that when we give up certainty, we “do not thereby give up the quest for truth itself. We still pin our faith on its existence, and still believe that we gain an ever better position towards it by systematically continuing to roll up our experiences and think.” James also believed in progress—epistemic progress and social progress. A commitment to truth does not demand that we discount the knowledge or experience of others, but it does demand that we constantly seek what is better in our lives.

While we may not pass judgment on someone who does not share our values, the values we hold most deeply must remain important to us. If our own values mean nothing to us, our lives have no meaning. The postmodern therapist has values and wants others to share them; otherwise there is no point in seeking healing. If we don’t seek more valuable lives, there is no point in living.

My question for Ron Paul: Autonomy and health care

Earlier this year at the Tea Party debate, Wolf Blitzer asked Ron Paul if a person who chose not to buy health care should be left to die. Paul responded that this person’s friends and community could support him and pay his bills. Many in the audience seemed to be all right with letting this person die.

Conservatives and libertarians both express a strong commitment to autonomy, which they sometimes refer to as freedom. The new health care law is unacceptable they say, because it requires individuals to purchase insurance. People should not be required to purchase insurance, but they should be responsible for the consequences if they do not have insurance. Of course, this scenario is rarely a problem for anyone, and Blitzer asked the wrong question.

I would want to ask a different question. I want to know about the person who has worked all her life and been successful. After 20 or 30 years, she decides to expand her opportunities by starting her own business. Remarkably, her business is profitable in its first year. She can afford to buy insurance, but she cannot buy adequate coverage because she has preexisting conditions that every major insurance carrier refuses to cover. When she contracts a serious illness, she is driven into bankruptcy because of medical bills that are astronomical but quite common. Should our country let her die? Should she be permitted to slide into bankruptcy?

Autonomy is not quite as simple a question as it apparently seems to Republicans and libertarians. Philosopher Isaiah Berlin described two types of liberty: one is negative and the other is positive. For conservatives, it is imperative that individuals not be forced to do something they may not want to do and no government intrusion is acceptable. This is negative liberty. For liberals, such liberty is meaningless if one is unable to make the choices he or she desires, which is positive liberty.

Describing the liberal view of positive liberty, Berlin says,

“It is true that to offer political rights, or safeguards, against intervention by the state, to men who are half-naked, illiterate, underfed, and diseased is to mock their condition; they need medical help or education before they can understand, or make use of, an increase in their freedom. ”

While conservatives will not force someone to purchase insurance, liberals want to ensure that everyone has the option to have health care. Everyone who needs health care and cannot obtain it becomes a liberal in an instant.

The number of uninsured in the United States is said to be around 50 million, but many more than that have inadequate insurance. Unfortunately, most people do not realize they are underinsured until it is too late. Many people only learn that their treatment will not be covered by insurance after they have received the treatment. What kind of autonomy is this? What is the value of liberty if it leaves one with no options to avoid bankruptcy, untreated illness, and death? Is this really what we want to be?