They never ask, the old ladies.
They just hug, pinch, kiss and
Cuddle at will. Babies are theirs,
You know, and they do love them
So much. I guess it isn’t their fault,
No one ever told them they aren’t
Free to touch at will. I once told
A woman to get her hands out of
My hair, and she said no man
Had ever asked her to stop
Touching him before. As an old
Lady, I’m sure she became another
Of the baby grabbers, the snogglers,
The unwanted snugglers, making
Babies turn away and stretch
For Daddy’s protection and loving
Embrace. And the Daddies will say,
“Don’t touch the babies. They are not
Yours to soil with dry lipstick and crepe
Paper skin. You may have thought your
Hands were never unwelcome, but
My babies know the master of their fate.”
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 ethics 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 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.
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 person 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.
As I write this, I am 55 years old. Like most people my age, I like to think I am a “young 55” or that I look good “for my age.” As I get older, I think I have become a little more patient, more accepting, less doctrinaire, and, yes, sadder and wiser. However, I have not become more adorable, precious, charming, or sweet.
Although I am not yet extremely old, I’ve already noticed that younger people I hardly know sometimes refer to me as “sweetheart” or “sweetie.” This seems to be a particular problem in healthcare settings. Some call it “elderspeak,” which is characterized by treating older people more as children than as fully functioning adults (I personally feel this demeaning language is often inappropriate for children as well, but I will take one thing at a time). For some reason, when people talk to older patients, they tend to slow their speech, raise the volume, and sing their sentences. In addition, every statement seems to become a question and second person pronouns are replaced with first-person plural pronouns ( e.g., “you” becomes “we”). You can read more about this phenomenon here. At a time when nursing home workers are sharing explicit photos and videos of older adults on social media, complaining about “sweetheart” seems almost quaint, but both the diminutive terms and the more extreme demeaning media rob patients of their dignity and personhood.
Other people seem to think they are honoring older adults by treating them as mascots. Many videos on social media feature adults who are “adorable” or “precious” dancing, singing, or doing other activities they have no doubt done for their entire lives. The videos are presented with the exact same attitude behind videos of kittens, puppies, and babies. Samuel Johnson once said, “A woman’s preaching is like a dog’s walking on his hind legs. It is not done well; but you are surprised to find it done at all.” Videos of the elderly seem to take the same attitude: it is amazing that older people might still do the things they love. If they make the attempt to engage in the activities that make them happy, the are “so cute.”
The consequence of assuming adults become children once again in later life can have serious consequences. For instance, healthcare providers often ignore the sexual health of older patients. As this article states, “prevailing misconceptions among healthcare providers regarding a lack of sexual activity in older adults contribute to making elders an extremely vulnerable population.” The result of this ignorance, is that STD rates among the elderly are increasing at an alarming rate. Although about 80 percent of adults aged 50 to 90 years old are sexually active, they are infrequently screened for STDs.
I am more concerned, though, about the basic harm of a society that treats its elders as mascots for amusement. As we age we lose the respect of our fellow beings and we lose our status as persons. For the most part, younger people don’t mean any harm, even if they are doing harm; they are acting out of ignorance. That being the case, I am here to help. The following are things you should know about your elders:
They have and talk about sex. In a movie, it is always easy to get a good laugh by having an old person, especially an old woman, make any kind of statement that indicates she knows what sex is. Apparently, many young people believe that when you hit a certain age you become an innocent and naïve virgin, completely unaware of how people reproduce.
They curse. This is related to the first point, but it slightly different. If you curse now, you will probably curse in 10 or 30 years. At what point do you think it should become funny or cute? Old people have the same right to words that everyone else has. Language is a human right.
They still know how to do things. It isn’t amazing that someone who has danced since he was seven still likes to cut the rug when he is 80. Our abilities may diminish over time (some do and some don’t), but we don’t suddenly forget everything we’ve learned over a lifetime.
They are still rational and intelligent. I realize we all suffer some cognitive decline as we age and some are affected by diseases that accelerate or accentuate that decline, but young people also suffer brain injury, disease, and other limitations on cognitive ability. Age is not a sufficient reason to believe someone is stupid.
They’ve won the battles you are fighting. Somehow, your elders have survived. If you can manage the same, you should be honored, as you should honor them now. Any old person can tell you it isn’t easy growing old. Someone who has survived had the wits and strength to overcome many adversities. They could teach you a thing or two.
They are persons. Here, I am using the word “persons” in a philosophical sense of someone who bears human dignity and value. It does not diminish as you age. If anyone has value, you do.
In case you haven’t seen any of the videos I described above, here is an example:
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 Guardiandescribed 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 way 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.
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 in 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 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 rational 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.
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 advised 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)?
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 defined 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.
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.
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.