Stop infantilizing old people, please

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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:

The Mirror: Reflecting on Reflection

—Whatever happened to that thing you wrote?

—Thing I wrote?

—You wrote something many years ago.mirror-800px

—I wrote many things many years ago.

—But this was a thing. Someone asked for it.

—Oh.

—A thing. For a movie?

—A movie? Yes. Or a play. Or something.

—What happened to it?

—I don’t know.

—Did they like it?

—Who?

—The people who asked you to write it.

—I don’t know. Someone said they did.

—Who said they did?

—I don’t remember.

—What was it about?

—About?

—Yes, what was the plot?

—Plot? It was words.

—But all writing is words. What did it mean?

—What do you mean what did it mean?

—What was it trying to say? What was the story?

—It didn’t mean anything. It was just words.

—But what was it about? Where was it set?

—It was just words. It wasn’t about anything.

—How can words not be about anything?

—Words aren’t about anything. They don’t mean anything.

—That’s not possible. Who were the characters?

—Characters? You don’t seem to understand.

—No, I don’t understand.

—It’s a puzzle.

—Puzzling, anyway.

—Were there people in it?

—What? People in what?

—The thing you wrote.

—It was words.

—Did someone speak the words?

—Someone could.

—Or not?

—Or not.

—What about images?

—What kind of images?

—Illustrations.

—Nothing to illustrate.

—To help readers understand.

—No one understands the meaning of words and images.

—But they must understand something.

—Why?

—Art and language are forms of communicating.

—So you say.

—Everyone believes it is true.

—Most people seem to.

—How else can we let people know what we are thinking?

—I don’t know what you are thinking.

—But you have an idea?

—You will never know.

 

 

Sparkle, Autonomy, and the Right to Die

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

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

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

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

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

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

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

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

Book Review: The Experiment Must Continue by Melissa Graboyes

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

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

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

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

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

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

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

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

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

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

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

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

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