Problems with Medical Ethics: The Elephant

Fifteen years ago, I did part of my first pediatric training in the pediatric clinic of St. Raphael’s Hospital in New Haven. It was a nice hospital, well-known at the time for their excellent cardiac care. It was run by the Sisters of Charity of Saint Elizabeth, an amazingly generous order that really practices charity every day by helping those who need it most. Some of the nurses were in the order. The exceptional physician who ran the pediatric clinic was kind and really smart. I still use his home-made guide to pediatric neurological exams. We got along well.

When Reyna came into the clinic, she didn’t look particularly sick, just in pain. She was clutching her abdomen. She saw one of the medical residents, higher in the feeding chain than a lowly medical student like myself. Abdominal pain is one of the most studied of medical symptoms, especially because it’s so common. One by one, the resident and I ruled out some of the things it could be. The girl was 16. We needed a pregnancy test. Oddly, there was some sort of a problem requisitioning one. In fact, the clinic didn’t have one on hand. Her pain got worse, and she was admitted to the hospital. That night, her pain worsened considerably. Blood tests showed no signs of infection. The head of the clinic told us that a pregnancy test wasn’t needed. Within a couple of days, she needed an enormous amount of intravenous morphine. Eventually, if I recall correctly, she was taken by ambulance to Yale-New Haven Hospital for emergency surgery that fixed—and ended—her ectopic pregnancy. Maybe the doctor in charge knew a lot more than me about pediatrics. But I am still affected by my memory of this girls pain. Where was his ethics committee?

Every hospital I’ve ever entered had an office for chaplains. I think this is a good thing. Not meaning to joke about it, my post about lollipops discussed my rationale for using a partly physiological and partly placebo intervention to make a child feel better. I have described my use of hypnosis to help with an anxiety disorder. I think that if a child, if any patient, will feel better after an intervention of some sort, I’d like to use it if it’s safe. For the devout, the counseling of a religious guide can make an important difference in their quality of life. I respect it and recommend it when appropriate.

There is no bigger elephant in the room in which medical ethicists sit around and sip their lattes than religion. The topic is deeply taboo, and I can’t help but wonder if my email address will be unceremoniously ripped from the bioethics listserv database.

At a major national meeting a few years ago, I went to all the sessions given in ethics. In one, a discussion was promised concerning the ethical issues of contraception counseling and prescribing for teenagers. One side brought up the sobering statistics we all know about teen pregnancy and STDs. The other side argued that since condoms only work 95% of the time, that’s a 5% failure rate. Since that’s not acceptable, the only reasonable counseling for physicians to be doing is to tell teens is that abstinence is the only effective form of contraception.

More than a decade ago, I attended Georgetown University’s Intensive Bioethics Course. It was well-organized and I learned a lot. After the first couple of days of lectures, I asked why every lecture on any topic, with no exceptions, included mentioning what The Pope had said on the subject. It was Georgetown, and I was not naive about who ran the place. But I didn’t think it was an insulting question. I really wanted to know why my patients—atheists, Jews, Hindus, and Wiccans—might be affected by this*. Are religious leaders, whether laypeople or divinely chosen, gifted in unraveling of ethical complexities by their career success?

In what way, exactly, does holding a title of religious training qualify a person to sit at the medical ethics table? Are they guided by their training or constrained by it? Do their opinions apply only to their flock? What about the rest of us?

A rigorous principle of contemporary medical ethics involves disclosure. It might be in a grey area that all the objects in your doctor’s office—the post-it notes, the clipboards, the pens, even the magazines—have the name of a drug or drug company on them, but as long as the doctor discloses all the side income, then it’s OK. (They usually don’t disclose unless required to do so. Next time you’re in the doctors office, look around. How many of these ‘gifts’ can you spot?) Do we ever disclose religious affiliation? Should we? Should doctors disclose this? Should the hospital tell you that their ethics committee which has set the policy for pregnancy testing of unmarried teenagers is made up entirely of clergy handpicked by somebody who has a whole different set of values from you? What would happen if they did? Would parents of 16-year-old girls with abdominal pain bring their daughter there for evaluation? Here’s a scary thought: maybe they would prefer to bring them there.

If there is some basic foundation of ethics based on truths we hold to be self-evident, what exactly is added by expertise in dogma?

The case I described above is a real one. It was a horrible experience for me, the resident, and of course the patient. She did fine. It was one of the most unethical events I have ever witnessed.

*I really asked the question. What was I thinking? Like Peter Riegert walking into the Dexter Lake Club in 1978's Animal House, suddenly, the huge auditorium fell completely silent. The lecturer awkwardly dismissed my question without answering it, and I was too humiliated to insist.

Problems with Medical Ethics: Perimortal Obsession

Some of the most wrenching and difficult issues for us humans to resolve occur in circumstances near the end of life. The animal world has, I think, a pragmatic approach to leaving the crippled zebra behind for the lions as the rest of the herd runs away. It’s not so easy for us. It’s important to bring these difficult issues out into the open air. The current world of medical ethics continues to do an excellent job of figuring out what the issues are and helping the rest of us find rational ways of looking at these problems.

I did a search on PubMed, the National Library of Medicine online medical research reference source. I searched:

ethics AND death

and got 12,416 publications.

In pediatrics, there are grave and important decisions to make when babies are born with such severe developmental problems that their survival is in doubt. How much should we do? What interventions truly help this baby, and what interventions just prolong the suffering? Should we treat every such afflicted baby the same, or will it matter what State the baby is in, or what doctor it has? There’s a lot of healthy discussion in the bioethics world about babies on the edge of viability.

Likewise, it is partially to the credit of bioethicists that we now have ‘living wills’ and ‘advance directives’ which can guide our loved ones and caregivers if we cannot. This is a genuine advance in medical care, and has prevented a lot of suffering. (More on this in a later post.)

Despite this help with some of our most difficult choices in life, the bioethics field, in some ways, has chosen the easiest path. It’s true that one thing we all have in common is our mortality. Perhaps we also share a reluctance to deal with it, talk about it, and plan for it. About 65% of Americans die without a will.

This is the easy path because there are no right answers. The case will eventually end in a concrete way. Was the right thing done? Academically speaking, it doesn’t matter, since the focus will have shifted to the next edge-of-survival case.

I’ll say again that I’m glad that smart, literate people are concentrating on this. If I were ever pregnant with a severe brain injury and a fetus hovering at the age of survival, separated from my husband and father of this fetus but with a new live-in partner who doesn’t get along with my parents who are divorced because one of them is a fundamentalist believing in predestination and eternal afterlife so thinking that my demise will result in relief from suffering and ascent in grace and the other a devout believer in the sanctity of all life who insists that every possible intervention should be exhausted, then I’m sure I’d be happy there was an Ethics Committee at the hospital. That way, the burden would not fall on just one doctor to populate the daytime talk shows.

In fact, these cases do occur, and they highlight important topics we might never have thought of.

But they aren’t common. It’s also an easy path for professional bioethicists precisely because the situations are so vanishingly rare. The very fact that a medical case has made it onto the news, that bioethics bloggers are blogging about it, means a priori that it’s a rare bird. For every case like this, there must be thousands and thousands of problems that occur every day for which doctors receive no guidance but their own gut feel. There are ethical questions that arise every day, but publications and debates on these issues are few. Nobody gets interviewed on TV for this.

Hank, a very bright 15-year-old patient, came to my office a few months ago to talk to me. He was sent by his mother because his unstable moods and erratic actions were a serious problem for him both at home and at school. His parents were divorced, and both had new partners. He came to the office by public transportation, after school. After we talked about what had been going on, I told him I thought he needed a mood-stabilizing medication. He thought that would be OK, and we talked about possible side effects. I asked him explicitly if he would be willing to try the medication, and take it just as prescribed. He said he would, but only if I didn’t tell his mother.

Though he moved between his father’s and mother’s homes, he was aware of differences in his life at each place. Mom had better food, a well-stocked refrigerator, and was easy-going about bedtimes and curfews. Dad had better video and video games, and was more lenient about computer access but stricter about curfew. His mother, he told me, had sometimes used his previous medications as a threat or as a crutch to explain his behavior. She’d say ‘you need a higher dose’ or ‘I liked you better when you were on….’ This hurt his feelings. If he was arguing with her, he figured, maybe there was a good reason for it. Maybe she was actually wrong about something. His dad never did this. As he told me this, he was completely calm and rational. I believed every bit of his description—and I thought he was right.

1. Should I have seen him without a parent there in the office?
2. Are there topics of discussion that are off-limits?
3. Should I insist on telling his mother?
4. What if his mother calls and asks me what we talked about? Am I required to tell her the substance of our conversation?
5. What if she asks about my diagnosis and plan for him? Doesn’t she have a right to know that?
6. What will happen to my relationship of trust with this teenager if I say I won’t tell his mother but then I do?
7. What will happen to the teenager’s care if he stops trusting his doctor? He is my patient. I am responsible for his care. What’s best for him?
8. If I tell the father, and he pays for and picks up the medication, is he obligated to tell the mother (with whom he hardly ever speaks)?
9. If I want to monitor the patient once on medication, I will want him to return weekly for at least the first few weeks on medication. Who makes these appointments? Do I have to cover up the fact that the kid was even seen?
10. Even if I agree not to tell his mother, do I lie to her? If she asks if her child is on medication, do I say no? (OK, this is an easy one, since I am not willing to lie.)
11. In fact, California law does permit a minor to consent for certain mental health services without a parent. Other states vary, but many have similar provisions.

These are just some of the questions that arise from this one actual encounter.

From this single visit, the questions, I think, can be grouped as follows:

• What are the doctor’s legal obligations?
• Of the legal obligations, which are subject to interpretation and judgment? (Would my license be in danger if I did tell the parent, but not for a day or two?)
• What are my obligations to the patient?
• Do these obligation vary by chronological age?
• What about developmental maturity? (Surely a mature 12-year-old should have more autonomy than an immature teenager?)
• Are the obligations to the patient more important than the obligations to the parent?
• What should I write in his chart? Should I document things he tells me that he doesn’t want a parent to know when they can request the chart at any time?
• Is this mix of obligations changed when medication is involved? Is it changed when psychotropic medication is involved, as opposed to antibiotics, for example?

I did a search on PubMed, the National Library of Medicine online medical research reference source. I searched:

ethics AND “primary care”

and got 837 publications. That’s about 1/15th as many as when I searched for 'ethics AND death.' I know the situations I’m in are common and happen every day, to me and thousands of doctors.

Of course this is the tip of a very big iceberg. There will be more dispatches from this ice field soon.

Epilogue: Here's what I did. I took the time to convince him to inform his mother. I told him that if he didn't and she found out he was on medication--and the chances were good that she'd find out somehow--she could use against him the fact that he wasn't honest with her. She could also stop trusting me, as part of this deception. That could change his access to me. I offered to call her directly, and explain in medical terms why I thought medication was a good idea at this time. Hank liked this and jumped on it. I told him that the next time she said something about his medication that he didn't like, he should say "Talk to Dr. Wolffe," and not argue with her about it. I would contact him directly and keep him informed about any conversations I have with either of his parents about his medication. I got a portable phone and took it into the exam room. I called his mother right then, with him there, and told her that I'd like him to start some medication. She was OK with that. Hank was visibly relieved.

Fever -- 8 hot days

In my last post, Fever, I urged parents not to ask a doctor 'What could it be?' The list of possibilities is invariably a long one, and includes some extremely scary diseases that your doctor—like most doctors—has never seen in person. Good physicians always have in mind that if it walks like a duck, quacks like a duck...it's probably a duck. Any sound of hoofbeats is much more likely to be from horses than from a herd of zebras.

So when Matthew's mother called me to say that her 21-month-old has had a fever for about 4 days, I wasn't particularly worried, and told her that. I cared much more about how the child was doing—how sick was he?

Not very, she said. He had a fever pretty much continuously, up to the mid 104's (40°C). He felt lousy at those times, but his mother said that he perked up right away when the Tylenol kicked in. He was eating, keeping up with his fluids, acting like his usual self when the fever was kept down. I didn't need to see him—what was I going to do for him? If he was OK, then I was OK.

On day 5 of the fever, I called the family to check on him. Nothing much was new. Still had high fevers, but nothing in particular was hurting. I told the parents that as a rule-of-thumb, I usually order some basic tests if a child has about 5 days of fever without giving us any clue of what its from.

Most of the time, we don't find anything when we do these tests. And very often, the tests come back normal just as the rash is starting. One of the most interesting and sometimes frustrating common diseases of toddlerhood is Exanthema Subitum, also known as Sixth Disease, also known as Roseola Infantum. It's probably a deep truth about medicine that if you or somebody you know has a disease which has 3 different medical names, it's a good bet that medicine doesn't know much about it. In the 19th century and earlier, the cause of most diseases was completely unknown. So the classification system was based not on the cause of an illness, but on how the physician would witness it progressing. These days, we think of illness as either from a cause of some sort. Back then, there were 6 numbered rashes of childhood. First Disease, for example, is measles. Sixth Disease was a longstanding mystery until 1988 when the viral cause of it was discovered. Luckily, it seems to be the least dangerous of the numbered diseases. What makes it frustrating, and often results in lab tests that turn out to be unnecessary, is the high fever for day after day. Just like Matthew, the kids aren't very sick when we control their fever, which can last for days—usually 3 to 5 days, but I've seen it go a week. Then, mysteriously, the fever goes away and the child gets an awful-looking red rash over their whole body in a matter of hours. The rash doesn't hurt, doesn't itch, and goes away in 1-2 days without a trace and without treatment.

So I knew it was just a matter of patience. The parents, both scientists, were fine with that when I explained the plan. We'd take it day by day, and wait for the rash to appear.

On the morning of day 6, I called for a report. Nothing much was new with Matthew. But in the back of my mind was the fact that this was a boy, with a father is of Asian descent. The longer he went without getting the rash, the more I needed to question if I was right. While I was on the phone, I asked his parents to look at him and tell me if he had any rash of any kind, or if his tongue looked odd or if his eyes were red. I made them describe to me the skin on his hands and fingertips.

About 6pm on day 6, I called and was told that his eyes were a little pink. I drove to their house to look at him. Matthew was watching TV with his older brother, eating a banana. The boys didn't look up when I came in. His eyes were, in fact, a little pink. He wasn't rubbing them, and there wasn't any goopy stuff in the eyes. Everything else looked just as usual. I told the parents that I could wait no longer, and insisted that they take him for a blood test first thing in the morning.

On the evening of day 7, his fever still going, I got the lab results. There wasn't any particular evidence of infection in his blood, but his platelets were about 550, about twice the normal level. That was enough for me. I told them to take him right then, as soon as we got off the phone, to the emergency room at Children's Hospital Oakland. I called the ER and spoke to the doctor in charge so they'd be prepared for him. I told them he had Kawasaki Disease.

I came to the hospital later that night. The treatment was just getting started. We give an intravenous product of filtered, donated human blood called IVIG [Intravenous Immunoglobulin]. It's a liquid packed with all the antibodies and immune cells and chemicals from lots of people, with all the other blood components removed. It's like an immune-system sponge, which vacuums the system of illness-causing agents. We also give them aspirin, the ancient concoction originally from willow bark. It keeps platelets from sticking together (which they are supposed to do in order to help stop bleeding and form blood clots). By day 8, the next day, his platelet count was 750. If it kept going higher, he could be in danger from so many platelets clumping together, making the blood sludge in narrow vessels and potentially causing damage to major organs or a stroke. Matthew was about 26 pounds or so, and we were giving him 4 adult aspirin a day.

Kawasaki disease has yet another mysterious feature. It can cause coronary aneurysms in children. Usually only seen in older adults, these can be serious. They are weaknesses in the walls of the blood vessels that provide the heart muscle with blood. They form bulges in the vessel wall. If the weakened vessel breaks, part of the muscle will not continue working.

This disease is baffling, and reminds me that in past generations there were always those who wondered why they didn't know the cause of some illness even with their incredibly sophisticated 'modern' technology. The disease was only really identified (by Dr. Kawasaki in Japan) in the 1960s. With every technique of current molecular biology, no one has any idea of what causes this.

Because it has occasionally appeared to occur in clusters, it might be something infectious. But if it is, it's very hard to get. It's a rare disease. Maybe some people have a genetic predisposition to be susceptibility to it—it's more common in boys than girls and about 10 times more common in children of Japanese ancestry than in average American children. It's more common in children of other Asian descent than Caucasian children, but less common than in Japanese. Some people think that it's a lot more common than we know. Maybe those old people with aneurysms had unexplained fevers when they were kids, and nobody made anything of it at the time. But it weakened their vessel walls and 60 or 70 years later, they come to the attention of a cardiologist. Maybe adults are getting this disease too, but their symptoms are different. Maybe in adults they're just tired, feel run down, and keep forgetting where they put their keys....

Matthew never got all the symptoms of the disease. Since we don't know what causes it, there's no test for it. By the time I saw him on the evening of day 8, his eyes were very red. Within 12 hours of starting treatment, his fever was gone and he felt fine. Fortunately, the examination of his coronary arteries showed no aneurysms. Who knows how his disease might have progressed if treatment had been delayed by a few days? It's remotely possible he could develop heart-related problems later on, and he will be getting follow-up from the cardiologists. He seems to be fine for now, and he takes a chewable aspirin every day.

Don't ask your kid's doctor what it could be. Just try to find a doctor who knows that there are zebras out there, and who might recognize one at a distance.

Toddler Makes Friends with the Doctor

This was a great day and a great visit.

I had my first visit with a 16-month-old girl today. Her mother interviewed me a week or so ago. When her mother called today, I told her that I was surprised I passed the audition.

I didn't think she'd pick me as she looked for her new pediatrician. My practice is very grounded in practical science, and in general I am reluctant to intervene unless necessary. This is a luxury of good access to the physician and a willingness to see patients whenever they need it. It's a luxury of good follow-up. So I don't routinely give a prescription to every kid with a cold. This parent liked that, but I know she would have preferred a doctor who was ambivalent about vaccination but a cheerleader for something more alternative. It took a lot of humility for her to return to me with her child when it would have been easy to find a practitioner here in Berkeley who could meet every litmus test for alternative medicine. But her daughter had a cough for a few days. When she called, I suggested she bring her daughter in today.

During the interview last week, the girl was exploring the toys I have in the office. They are there for a reason, after all. She was reluctant at first, and didn't know what to make of the balding giant with the tie. It is an anxiety-provoking situation at her age. I saw she was not comfortable, so I took the basket of stuffed animals, turned it over, and let them all fall into a big pile on the floor. I laughed when this happened.

Today it was the first thing she did. She knew just where to go and didn't ask permission. She picked up the fabric basket and dumped out all the stuffed animals. She really laughed. Then she put the basket over her head. For the first 10 minutes or so, I sat on the floor and did silly things with her. When her mom and I were talking, she would sometimes seem bored, so I got up and fetched her a new toy from another room. Her mother looked a little concerned when the floor was covered with toys. I reassured her that this is exactly what will help the child be comfortable.

Eventually, of course, it was time for the exam. As I approached, the child backed away into mom's lap. I kept talking to her in a soft voice. I offered her my stethoscope to handle and check out, just to make sure it was OK and nonthreatening. I picked up a stuffed dinosaur. First I listened to the dinosaur, then her mother's leg, then the dinosaur. Back and forth right in front of her just to show that neither her mother nor the dinosaur minded even one bit. Back and forth she followed the movement as if she were watching a tennis match. Then I made a quick stop on her chest--just for a moment--and then back to the dinosaur. Then a longer pause on her right chest, dinosaur, left chest, dinosaur, right back, dinosaur, left back. I took off the stethoscope and handed it to her. She gave a big smile and put it on her ears. I took out my little otoscope and handed it to her. She knew right away! She put it in her own ears and I held on briefly to give myself a quick view. By this time she was laughing a lot and I as able to use one of those opportunities to get a good look at her throat. I felt her neck and we were done.

That was the first time in her life, her mother said, that she ever had a doctor visit in which she wasn't screaming throughout. Her mother said she'd start screaming when they approached the doctor's building.

I've seen doctors examine children who are screaming. Sometimes that's what has to be done and there's no way around it. But I've never met the 1 to 3-year-old who lets a non-parent adult get right into their space and poke around the way a doctor does. I have sometimes read exam notes that say that a kid's heart sounds were normal or their lungs were normal when the only exam was while the child was terrified and wailing. It takes practice and patience, and both only come when the doctor is willing to take the time to let the child come to him.

Medically, a child's uncooperative demeanor is a potentially serious confounder of physical exam findings. Crucial and subtle observations, such as sounds of the heart and lungs and abdomen, are easily eclipsed by the glare of screaming. Indeed, the gestalt of the child is an essential observation of the skilled examiner (ie does the child look sick?). Is the child in distress from the illness or from the situation? The good doctor needs to know these things and figures out how to get the information needed. It may look like play, but I take it very seriously and work very hard at it.

Just as with adults, some kids are a lot more anxious than others. But just as with adults, it's a lot less stressful to have a doctor you like. I believe that this results in better care. The exams are better, the communication is better. Even the communication between 16-month-old and pediatrician.

The kid had a cold, I thought. No need for medicine, I told the mother. Some home-made nose drops might help with the congestion. Nothing for the cough unless it gets to be a problem. And of course, call me anytime if you're worried or if she's not better in a few days. The only time the child was upset was when she was leaving. Her mom and I agreed to make another playdate soon.



The photograph: photographer Arnold Eagle is most famous for documenting the Lower East Side, a tenement area of New York City. In the 1930's he took a series of photographs he called One Third of a Nation, referring to children living in poverty. He made up a book from the prints of this series, and gave it to his wife as a gift. There are no other copies beyond the one that was in my collection.