Exit Strategy (#poem)

“… come out of the wardrobe, cross the line of the rainbow and be who you want to be!” Dona Onete

After encouraging him to explore his “other side,”

She said, “If you leave me, I will tell about this,

And you will never see your children again.”keeping promises.jpg

And so it began—a desperate life locked

In a wardrobe guarded by a severe overseer.

Each tentative act of self-expression

Quashed in a confused melee of frustration.

He lived an inauthentic life of duplicity under duress,

With progeny held for ransom in

An unending act of passive aggression.

He lives behind a mask—

A promise keeper and provider—

As a pillar of the community,

A propagator of traditional value.

A leader is born in shame,

As he passes judgment on

His fellow sinners and wanderers,

He builds influence and takes on followers

Until his identity cracks,

And the anti-depressants fail

Along with his attempted suicide.

From hospital, he reads the headlines.

Everyone knows his name.

His warden and manipulator is now moot,

So he lifts himself off the pillow

And squares his shoulders

Before facing the inevitable question:

“If you were so miserable,

Why didn’t you leave?”

In US, Illness is Financial Anxiety

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

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

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

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

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

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

 

 

Payment as Coercion: Researchers Versus Research Participants

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

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

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

And so it goes.

How to Support a Mourning Man

When Olympian gymnast John Orozco made it onto the US Olympics team after recovering from an Achilles tendon injury and, more importantly, the loss of his mother, he wept openly with a mixture of joy and profound grief. We can’t know whether he was trying to suppress his tears, but they flowed freely and he made no apology for them. I was moved by his emotion, of course, but also grateful that he appeared to weep unabashedly and free from shame.

Not many men can do the same. I have been honored and fortunate to be in the presence of men crying on a regular basis. As a volunteer facilitator for a grief support group, I see men seeking support after the loss of their children, spouses, or other loved ones. Although a few manage to suppress their tears, most of the men weep, and almost all of them apologize for crying like a child. Fortunately, other men who have experienced a traumatic loss are quick to offer a reassuring, “Don’t worry, I’ve spent many hours crying my eyes out, too” or something similar.

It is disappointing, though, to learn how many men do not feel comfortable crying in front of their own families and partners. I hear stories of men crying in the middle of the night or in cars, closets, and bathrooms. Some men schedule time to let their tears flow as they try to put on a brave, unemotional face for the world.

I wish I could say their efforts were unwarranted, but too many men have been criticized for their tears. One distraught father who lost his son to suicide told me people at the funeral told him to “pull himself together” for his family. Other men tell of supporting their wives through extended fits of wailing only to receive a cold shoulder when they break down. Often, I hear laments along these lines. “I know I’m a strong person. I have to be strong. But this is too much. Is there nowhere I can get support?”

It is commonly held, even by some therapists, that men naturally grieve differently from women. Allegedly, men process their emotions through actions rather than emotional purging. Men may bury themselves in work, start organizations in the name of the deceased, build monuments, or fight for legal changes to prevent future deaths. Of course, many men do this, and so do women, but this does not mean that men’s biology prevents them from accessing their tears. Men and women both grieve through actions and tears.

If anything prevents men from grieving openly, it is social prohibition, not biology. Whether you are a man or a woman, please know that most men are capable of crying, need to cry, and should not be ashamed of their grief or their tears. If you need to support a man in mourning, please let him cry. If you are a man in mourning, please follow the example of John Orozco and cry without shame or apology. You are not crying like a baby; you are crying like a man.

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:

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.

 

The Problem with Telling Boys to Never Hit Girls

First, I should clarify that I do not think it is acceptable for boys to hit girls, but the admonishment to “never hit a girl” has two problems. 1. It gives tacit permission to hit other boys. 2. It tells boys they have no right to complain when someone hits them. Under this one maxim, boys are certified as aggressors and negated as victims of violence.

If parents and teachers simply told boys not to hit, it would go against everything masculinity represents, unfortunately, in our culture. Fathers would worry that their sons would never toughen up, “grow a pair,” or be able to attract mates. Surely, they say, if boys don’t enter the rough and tumble world of male aggression they will all grow up to be homosexual. Rather, they really mean they will grow up to be “feminine” (I use the quotation marks to show that I do not believe any particular traits are feminine or masculine, but these words are used in stereotypical fashion), which is the real fear. Misogynists assume feminine boys are gay without understanding the difference between orientation and identity or the simple human spectrum of personality traits. It is misogyny that drives the rage against non-conforming boys. It is hatred of who they are more that what they do.

To avoid recriminations, boys with take and give punches and other forms of violence on a regular basis as practice for adulthood. The boy who grows up in this environment isn’t shamed for being violent. Rather, he is shamed when he is passive. If you are a boy who has been told he must never hit girls, when someone hits you, the aggressor has done nothing wrong. In fact, if you don’t hit back, you have done something wrong. You are lacking. Violence is an obligation of masculinity.

If you fail to stand your ground, you will be reprimanded for letting some bully push you around. You will likely be put in self-defense classes. You will likely be told you must toughen up and learn to take care of yourself. While a girl in your position might be given the opportunity to learn self-defense, her status as victim protects her from similar shaming. Violence may be an option of femininity, but it is not an obligation. Boys are denied the status of victim. Boys are told they can only be bullied if they don’t stand up for themselves.

And if a girl hits a boy, the boy is in a double bind. The shame of being hurt by a girl is far greater than the shame of being hurt by a boy, but the opportunity of self-defense or retaliation is taken away. The boy will face shaming such as: “How could you let that happen? She’s just a girl. Don’t hit her! She’s just a girl. Be a man! Just walk it off!” We wonder how adult men become victims of domestic violence, but this pattern is carried into adulthood. The man who is physically assaulted by a woman is rarely recognized as the victim he is. A woman half his size (of course, not every man is married to a woman half his size) couldn’t possibly hurt him. Surely, a grown man can take care of himself? If he strikes back, he earns the label of abuser for himself. His explanations are unlikely to be believed.

In addition to teaching boys that they are acceptable victims of male-on-male violence and that aggression against other boys is expected, it does little to protect the physical integrity of girls and women. Some time back, a video PSA against domestic violence went viral. The video shows boys standing in front of a passive girl as a man off-camera tells them to touch her and caress her. The boys do not hesitate to touch her until the man tells them to to hit her. All the boys refuse, inspiring tears and celebrations around the world. At the end of the video, a boy is told to kiss her. He asks only, “On the mouth or the cheek?” The message, it would seem, is that girls, passive and beautiful beings that they are, should never be hit but should also never have agency over their bodies. They boys say they are against violence, but they appear to have no concept of consent. They are willing to touch her body without her invitation but with the approval of an adult male. Before venturing a kiss, the boy asks the man, not the girl, how to proceed. I find the message of the PSA disturbing.

We could instead teach boys and girls to respect the bodies of all others. Sure, teach the children self-defense techniques but teach them also that aggression is an assault on the bodily integrity of another. Furthermore, this aggression can come in the form of a slap, a kick, or a kiss. We can teach children to respect all bodies and that touching others requires consent, and we can begin by showing respect for the bodies of children. It is not all right to hit girls because it is not all right to hit people. And, as the video below shows, it is not all right to hit animals, either.

Grief Story: Daughter recalls her father’s death in the UK

The following is the recollection of a woman in middle age reflecting on her father’s illness and death some years earlier. I’ve heard many people from the UK who express similar gratitude for the NHS.

Memory is not my strong point. I say that because, when someone is dying, memory can get fuzzy anyway and I will remember some things about my Dad’s dying and death clearly and some things less so.

I guess Dad’s illness became most obvious about a year before he died. I can’t remember whether I knew it was Myelodysplasia – MDS (a form of leukemia in which the bone marrow does not function normally and produces insufficient number of normal blood cells ). What I do remember is that he started to feel tired and listless and started to have regular blood transfusions, at first once a month, then once every two weeks and finally weekly (and it could have even been more often). This trek to the hospital for the transfusions was quite a burden for him and for Mum. I was living 200 miles away at the time so heard about it in our weekly phone calls. Mum would tell me how he was doing. It seemed at first that everything was under control and there was nothing really to worry about. Life went on.

I think the first time I began to realize that something was really wrong was when I went home for a visit and saw the weight Dad was losing and how his mood was really affected by the illness. He was irritable, not his usual cheerful self. Someone had come to visit, a neighbor who, if I remember right, was also going through some illness himself. I Despairremember Dad only being able to tolerate a very few minutes of the social interaction before he had to give his apologies and go back to bed because he was so tired. I think this was a shock to me. This had to be about 6 months in.

I tried to visit more often of course, but a life in another city and a busy job kept me from doing so. I would hear in more regular phone calls with Mum about Dad’s slow deterioration. I marvel at the fact that the intense regime of transfusions and the treatments associated with them were free to Dad – a function of the British National Health Service (NHS). Over their years of working Mum and Dad had contributed their National Insurance contributions and now the NHS was doing what is was supposed to do – support them in their hour of need. Unlike here in the US, my parents never had a moment of worry about having to pay for the treatment – a true blessing at a time when any extra worry would have been overwhelming.

I learned later that Mum really knew what was happening, despite downplaying the seriousness to us (adult) children. I also learned later from her that she had tried to talk to Dad about the inevitable end point that she knew was coming – his imminent death, but, either because of his fear or discomfort for both of them in talking about such a taboo subject, she couldn’t get him to talk to her until a few days before his death and then only briefly.   My heart aches for the lack of this conversation, and I tear up now imagining what more discussions could have meant to them both.

Over the months, I think I had been hearing the stress in Mum’s voice and came to see them more often. However, she never asked for help – a Northern British trait if ever there was one. The first time she did tell me she needed me to come was on the day of the General Election in May of 1997. I will never forget that day. I was volunteering for the Labour Party that day, taking numbers at the polling station. Mum and I talked and she finally told me that she feared the worst – would I come? I, of course, said yes. I stayed up to watch Michael Portillo lose his seat  and got on the earliest train home the next morning.

When I arrived at home, I remember the stress, grief and fear that I encountered in Mum. I also remember seeing Dad, in bed, so tired, exhausted and drained. And thin, stick thin. A shock to me after not seeing him for a few weeks. That afternoon, the doctor came (yes, a home visit – a rarity these days). Dad had also been tended to by the District Nurse (as a side note, my recollection was that he had been looked after by Macmillan Nurses – an amazing free service via the Macmillan Cancer Support charity in the UK. In later conversations with Mum for this article, she reminded me that although they had applied for this help, everything happened so fast in those last days that Dad died before she got their help).   All of us, the doctor, the nurse, myself and Mum sat outside in the garden on the afternoon of 2nd May. I remember that scene so very clearly. I remember the doctor telling us about Dad’s condition and how he had deteriorated. I remember asking the doctor directly “How long does he have? Days? Weeks? Months?” I remember the doctor telling us that we should prepare for Dad’s death in the next hours and days.   It’s hard to convey to those who haven’t experienced this kind of interaction what a profoundly awful, sad and gut-wrenching feeling is engendered by this information. I think that’s why I remember it so vividly still today, 17 years later. There is something good about knowing this though, of course. It gave us just a little time to prepare.

So, with that time, Mum and I contacted my brother and sister who made plans to come straight away. That night I told Mum I would spend the night with Dad to give her some rest. In hindsight I don’t really know whether I regret that decision or not. It was probably one of the most traumatic and harrowing times of my life. I won’t go into details here but suffice to say that Dad was hallucinating on morphine and coming in and out of rational thought. It was a powerful and devastating experience, for both of us.

On Saturday my sister made it in the morning. She spent some time with Dad and then Mum and us girls made it through the day. Dad was in bed, still gravely ill but hanging on. What I now believe is that he hung on determinedly and staved off death until my brother made it home in the late afternoon. What an amazing gift he gave us for us all to be together at this profound moment. All of us were downstairs a couple of hours after he arrived and I heard a noise upstairs. Mum and I went to check on Dad and sat with him a while. Then he died.   Once more, it’s hard to convey the gravity of this experience. I was so glad we were with him to hold his hand and let him know that he was loved as he journeyed out of this world.   Once his spirit was gone and his body remained, we all as a family spent time with him, in his own bed, sitting with him, drinking whiskey and sharing tears and memories. The doctor and funeral directors came later that night and he was truly gone, spiritually and physically. To be honest much of these activities are a blur to me now.

I suppose the reason for putting all of this down on paper is partly to remember that time and have a record so that it’s noted in this span of life when I can still recall some details. Another reason is to remark on my experience of how terminally ill people are supported and cared for in England. Mum will have her own experiences of the National Health Service treatment leading up to this final time. From what I remember it was supportive. My sister reminded me that it wasn’t all great and that sometimes Dad would be waiting on a trolley until he could get a place in a ward and that this experience made him determined to die at home. However, what I do clearly remember is the warmth, care, attention and dedication of the healthcare providers I encountered. And, what I also remember is that all of this amazing care was free at the point it was needed. No-one in this story had to have the additional stress of worrying about which treatments were covered by health insurance. No-one had to worry about co-pays or debt because of the treatment my Dad had to have. No-one had to have the additional stress of worrying about bankruptcy if things weren’t covered. I know the NHS has it’s problems – it did back then and it does now. But, even though problems exist, the fundamental principles of the NHS: that it meet the needs of everyone; that it be free at the point of delivery; that it be based on clinical need, not ability to pay substantially helped my family to experience leukemia diagnosis, treatment and ultimately death in the best and least stressful way possible. I hope you’re listening America.

 

When the hospital refuses to provide treatment

Few things are as horrifying as the idea that a hospital might refuse to treat you or a loved one at a time of crisis. This is so frightening, that many used the specter of “death panels” to terrify Americans from supporting the Affordable Care Act, which had no provision for such panels. All the same, we don’t get to go into hospitals demanding whatever treatments we think are appropriate. Doctors, other medical caregivers, and insurance companies all have a say over what treatments are acceptable for various conditions.

One of the most common issues before Hospital Ethics Committees is futility. In all the cases I experienced personally, a family member demanded treatment for loved ones that threedoctorsdoctors deemed inappropriate as they felt it offered no benefit to the patient. In most of these cases, the patient was either dying or already pronounced brain dead when the conflict arose, but other types of conflict over futility arise from time to time.

For a less grave example, consider people who get a cold or cough and go into the doctor demanding antibiotics to treat what is generally a viral infection. Some doctors might prescribe antibiotics just to appease their patients, but others will refuse on the grounds that the treatment offers no benefit to the patient while carrying both costs and some risks. (If you prefer an even more absurd example just to illustrate the point, imagine someone demanding cholesterol medicine to treat a broken arm.) This type treatment is futile because it will have no effect on the condition being treated.

Another kind of futility is both more common and more serious in its consequences. These cases often, though not always, involve infants on ventilators or elderly patients receiving artificial nutrition (feeding tubes) and hydration. In these cases, doctors and the family or other surrogates agree that the feeding tubes or ventilators are keeping the patient alive, but disagree on the value of doing so. In some cases, the patient may be suffering and medical providers feel the patient’s suffering makes it unconscionable to continue treatment. In other cases, the patient may be in a permanent state of unconsciousness or even be brain dead, and the healthcare providers feel the patient no longer exists as a person in any real sense. All the qualities associated with life (consciousness, will, pleasure) are already gone, so treatment has no use.

Few forces in the world are as powerful as the duty we feel to protect our children or to care for our parents or other loved ones. The one comfort we take in the face of such a devastating loss is that we “did everything we could.” When doctors tell us that doing “everything” is costly, painful, and of no value, it can be more than painful to accept. Complicating matters is that most of us have heard of miracle cases where people recovered despite dire prognoses. When told that no more than one in a million patients survive such a condition, family members often only hear that there is some chance of survival. It is a point of honor that they will “never give up” on their child or parent.

I’ve seen doctors handle futility with great skill and also with awkwardness. In one case, a man was convinced the hospital was abandoning his wife at the time she most needed care. The man felt the doctor was expressing the needs of the hospital rather than the needs of his wife. Once he was reassured that she would be cared for even in the absence of treatment, he felt much better about discontinuing treatment. In another case, the doctor made every effort to assure the parents of an infant that she and the entire staff would stay with them throughout the ordeal and do everything possible to reduce both the suffering of the child and the pain of the parents.

It is impossible, of course, to eliminate all disagreements and conflict, but I think doctors who are able to effectively communicate empathy and concern for the patient and the people who love the patient have greater success at avoiding battles with patients. We all want to know our experiences are recognized and validated. We all want to be heard. We also want the dignity of our loved ones to be promoted and protected, especially as they face death, which strips them of autonomy and self-respect. We want healthcare providers to recognize that we hold our dying loved ones in the highest regard even if they can no longer speak for themselves and show why they are worthy of such respect. When we fight for their lives, I think we are really fighting for their dignity and worth as a person. Doctors will do well to keep that in mind.

Patient Story: University Student Faces Surgery in Wuhan, China

I am hoping that Ethics Beyond Compliance can become a place for patients and caregivers to share their stories of medicine, medical research, illness, and loss. The following post is by a university student in Wuhan, China who had to undergo surgery and spend 12 days in the hospital (for less than $1,000). Here is her story.

Wuhan, China

In the end of May 2014, after few really spicy meals, I had dysentery. A few days later, things became worse, so I went to the eighth hospital of Wuhan, which specializes in anorectal diseases.

Knowing that I needed surgery, I felt very nervous and insecure. Then my dad asked one of our relatives, who is also a proctologist, about this hospital and the doctors here. My relative recommended a doctor for me. I went to see the doctor, and he agreed with the former doctor. At first he said he would perform surgery the day after but later told me he had some other business for the day after, so we had to do the operation that day, which was children’s day, 1st of June.

They gave me an enema first, and then had me do a lot of tests such as blood test, allergy test and so on. Later, a nurse came in and gave me a tranquilizer to prepare for the operation. Then another nurse came in to lead me to the operation room. I signed some paper for anesthesia. After a while, there was an angry nurse for the operation who, I guess, frowned on my skirt. I said “sorry,” but she kept frowning on me, which made me very upset and a little bit angry. During the preparation, I asked the angry nurse why she seemed so unhappy, and she said it was just work, nothing else. Then she tried to give me injection. But somehow she had no luck. She gave me three injections in the wrong place, which hurt me a lot. I tried to calm her and said, “It’s okay, don’t be nervous,” but the truth is deep down I felt I could not bear one more try. My hands were very swollen. Finally, the fourth went okay. During the injection a man gave me anesthesia. I could not feel my legs, and then the doctor came and asked me to kneel on my front.

I could not tell what was going on there, but I could hear what they said. The angry nurse checked my wound and said, “Ew, that’s big wound.” Then the doctor said he didn’t expect such a big one either. And he said he would show me my files later, but I said “No, thank you.” Somehow another nurse came in, made some comments and flirted with the doctor. Then another doctor in, also judged my wound, and said something that was not very nice. I swallowed it all in. I felt so assaulted and humiliated, but I could not do anything. Finally, it was over. They used the bed to send me back to my room.

I guess it’s because of the anesthesia that I still could not feel much. Only tired, exhausted. After having some fluid, I fell asleep. I remember around 3 o’clock, I was awoken by severe pain. I could not even cry loud, but somehow my aunt heard me. She woke up the caregiver, whom we hired that day. The caregiver came and helped me to pee; I felt like peeing but owing to the anesthesia and the pain, I found it difficult. After three painful hours, I finally did it. With the help of two painkillers the caregiver gave me, I fell asleep again.

Every time I woke up, I was in great pain. Still I had four more days of injections. The younger nurse tried to give me an injection but she failed and asked an elder nurse; however, the elder nurse gave me even more pain. Then there came a middle-aged nurse who smiled a lot at me even though she felt nervous while giving me the injection. I think she is the first nurse I met in the hospital who made me feel comfortable.

My dad checked on me from time to time, told me the doctor asked for more money for this operation because of my large wound. I checked the bills and found mistakes. I told one nurse, and she said she would check on it but later, and then I got no response.

I spent 12 days in the hospital, and the whole operation cost me 5,618 RMB ($905.00) not including the caregiver.