Anxiety—College Boy Problems

Before I met with Peter, the 21-year old college boy with anxiety, I asked his parents if there was anything they were concerned about. He said, “Well, it would be great if he were a little more outgoing.” I hadn’t seen the boy in a couple of years and didn’t really know him well since he didn’t go to the doctor much. Was he shy?

An hour or so later, with them waiting patiently outside the exam room, I knew he had a full-blown anxiety disorder. Many people have some anxiety in certain situations, like public speaking. Some people have more focused anxiety about specific things, like spiders or heights. Some have anxiety about things that they themselves know intellectually to be fairly harmless to most other people, such as a fear of balloons. Some fears are so unusual that the person is able to talk about them freely, and knows that they are not an issue for everyone else they have ever met, but the fear is quite real to them. Perhaps a great thing about the internet is that it can give this last group of people the ability to connect with the 1 or 2 or 5 other people who share their unusual problem. By example, there is a community, of sorts, for those with a fear of buttons.

He lived at home with his parents. There’s nothing wrong with that, of course. His parents were nice people and nice to him. And they never threatened to kick him out. They probably never would. That’s a nice thing, too.

But he never indicated that there might be advantages to living away from his parents. More than that, he couldn’t fathom why anybody his age would want to move away from home. It wasn’t like he was so emotionally tied to his parents. I had spoken with them, though not about him. They went on vacation, sometimes camping. They went out to the movies sometimes. Most of the time, I learned from Peter, he never wanted to go. I could picture a dysfunctional relationship in which he didn’t want them to leave, but he never objected. He was most comfortable just staying at home. Alone.

He wasn’t psychotic about his anxiety. He didn’t believe (or say he believed) that if he rode the bus then the world would end by a volcano emerging under his suburban town just as a meteor hit the earth causing an rip in the space-time continuum which would provide an attack opportunity for the Monsters from the Id.

Still, I had a bad feeling about where this was heading. Unlike the College Girl I had seen just a day before, he was not tortured by his anxiety. He knew that others weren’t as concerned as he was about many things, but the way he thought was obvious. Every unusual fear was completely reasonable, and he was almost bemused about the mad foolishness he witnessed around him. To him, our riding in vehicles of all kinds appeared like those who walk tightropes over great gorges. He saw that people did it, that they could do it regularly, but you’d have to be positively nuts actually to try it.

This is also how he saw the pursuit of human relationships. This was another big difference with the College Girl. She didn’t have a boyfriend and wanted one. She absolutely did understand why her peers were in or wanted to be in a relationship. She also understood what was keeping her from achieving this goal. She perceived her anxiety as a handicap that she hated, a roadblock she was desperate to overcome and was so far unsuccessful at doing so.

Was he really forthcoming with me? Like every patient, he was entitled to his privacy and owed me no explanation. Some doctors, I know, think that if a patient isn’t open about something, or if a patient fabricates something, then they can’t or shouldn’t help them. It’s certainly an impediment to treatment when a person doesn’t seem to respond to medication that they say they are taking but aren’t. But mostly if patients want me to give them my best advice and they want advice based on some hypothetical situation, that’s what I and they will be stuck with.

Is this denial? Once I saw a child who had been in and out of emergency rooms at least 4 or 5 times over several months. Every time the family went in with him, he had trouble breathing. He was given breathing treatments and medication and sent home to follow up with his primary care physician. They didn’t give him the medication, didn’t make the follow up appointments. They needed a form filled out for school, and the doctor told them that the child had asthma and would benefit from better control of his symptoms. They changed doctors, and came to the practice where I used to work. I told them their child had asthma and would benefit from better control of his symptoms. He went to the ER again, then they asked for their records to be transferred to another practice.

Is it my job to puncture his denial, if it is? Is it my role to judge his life decisions as somehow inadequate, as incompatible with happiness? Is my definition of happiness and success as an adult a reasonable goal? There are societal norms, of course, and he was aware of these. Marriage, family, work, kids, and so on. Certainly here in one of the epicenters of alternative lifestyles, there aren’t a lot of choices that wouldn’t be tolerated. Besides, I lived in Utah for 3 years. In ways that I appreciate more from a distance—topographical, chronological, and metaphorical—some of those people were very much willing to do a lot to live outside of the mainstream. Whether in shallow swamps of consanguine genes or in isolated heavily-armed bunkers waiting for the race-war end-of-times, they were going to do it their way.

Let me be explicit about some of the ethical issues associated with this case.

1. If the patient doesn’t think it’s a problem, is it a problem? Before there were Wall Street executives who didn’t take any responsibility in their congressional testimony, there was a panel of Tobacco CEOs who swore under oath that they didn’t believe that smoking caused health problems. That seemed sleazy and dishonest. But if a patient says that they are just fine with what they are doing, does it matter if they are in denial or are out of touch with reality?  Does the doctor have an obligation to do more than educate, inform, and offer help?

2. Is Peter hurting anyone else by his inattention to his anxiety disorder? Sure, his parents had dreams for him that might be difficult to achieve. But who among us has parents who have always thought that we would be exactly who we are now? I am, to be blunt, worried that what appears typical enough at the moment—a college kid living at home while attending a decent and popular local institution—could become more cumbersome as the years go by. Do his parents deserve a life of their own, without their kids? Do their kids owe them the freedom gained by moving the heck out of the house at some point? And the parents aren’t my patient, so should I care what they need?

3. I want to repeat that last part. The parents aren’t my patient. This is an easy issue for some of the patients I see. I have a patient who’s nearly 30 now, severely developmentally delayed. I have autistic kids who are technically autistic adults. It’s an easy issue for them because they have legal guardians and decision-makers. Not Peter—he’s warm and smart and going to college. But in some ways, obviously from these essays, I think of him as having a handicap. It’s not politically-correct, I know, to use that term at all. But there’s something about him, that is with him in every setting, that often interferes with his achievement of some of his own goals. It interferes, in my professional opinion, with his ability to meet some criteria of independent—if not happy, perhaps—adulthood. The Americans with Disabilities Act of 1990 says a covered disability is a physical or mental impairment that substantially limits a major life activity. What, if anything, should I tell his parents? That their kid is sick and needs to have medication spiked into his orange juice? I want to tell them everything. They are his best advocates, they know something isn’t right. He gets along well with them. Shouldn’t they be there to encourage him to seek the help I think he needs? A lot of parents read this, and would probably agree. But what about when you were 20—would you have wanted your doctor calling your parents?

Anxiety--College Boy

Peter was at college here in Berkeley, and needed a physical exam form filled out for a summer job he had applied for. He came in with his parents. I asked them if they were worried about anything in particular and they said that he had been very healthy. But they wished he'd get out more. Maybe be a little more...outgoing. He looked very relieved when his parents left the room.

"Gosh," I said, "I thought they'd never leave!" He smiled briefly. I asked how college was going, if he had a major.

He said, politely enough, looking at the floor, "It's going OK. Don't have a major." Didn't I recall that he was interested in Economics? "Yes, but I didn't get a good feeling from those people." Meaning, I took it, from those in that department. How about people in other departments? I told him I thought there was a lot to be said about finding a group where you feel like you fit in. "Maybe, but I don't fit in." Still no eye contact.

"You haven't made a lot of new friends?"

"None, really."

"Are you in touch with your friends from high school?"

"I had two friends in high school but they are going to college in Hayward [Cal State]." It is a sad fact of suburban life that the logistics of socialization are often very cumbersome for children. (This is very different from my experience growing up where public transport was great and cheap.) But he was 21, not 14. What about borrowing a car from his parents? "I don't drive."

"Why not? Didn't they have driver education in your high school?"

"Yes but I stopped taking it after the first day. It was just too dangerous." But his mom and dad drove, I pointed out. "But I won't drive with them at night. Anything could happen. No," he added for emphasis, "I definitely don't want to drive."

Most 16-year-olds have, at least in their minds, cut from magazines the photos of the cars they want to have. A car, or access to one, or even without access but having a driving license, meant adulthood, liberation from the control of their parents, freedom. Most American teenagers have much clearer dreams of owning their own car than they have of owning their own home someday. I think that this is less prevalent among those growing up in urban settings. (A wealthy high-school classmate of mine had his own car, but I don't know where he drove it (let alone parked it) and neither I nor most of my other classmates were envious.) But this is California, where having a car or wanting one is or should be considered an essential developmental milestone, like walking or potty training. When he said that he didn't want to learn to drive, whatever alarms were not already ringing for me started to go off. "What about going to Hayward on BART?" [Bay Area Rapid Transit--a not very extensive system, but fast and reasonably comfortable and clean.  And ] I knew he lived in a town with a station.

"That goes under the Bay!" he explained as if I has somehow been misinformed about this fact.  But it didn't between Berkeley and Hayward.

At some point, I stood up to wash my hands and examine him. I went to put my stethoscope on his chest, but stopped. "Gosh, Peter. Have you been gardening? Working with paint solvents?" His hands were red, very dry-looking and irritated. He denied this but said that he washed his hands a lot. Mine were not so raw, and I typically washed them 20 times a day, sometimes more.

"I know. I'm a bit of a germophobe."

He was attending college locally. So I asked him if BART was uncomfortable for him, why wasn’t it a problem taking the public transit bus to school?  He told me that he walked to his college campus, about 3 miles or so from his home. He admitted that not using public transportation was a real barrier to making and sustaining new friendships at college.

Continuing in this line, I was worried about what would come next. As I would ask any patient his age, I asked if he was dating anyone. I assumed that this would be logistically difficult for him, given his transportation constraints. He said he wasn’t in a way that concerned me. Sometimes I get a disappointed response, when the college kid wished they were dating somebody. Sometimes it’s a blissful yes they are. He looked at me at me with an odd expression of confusion. Now I was confused about why he was confused. I asked him to clarify what he was thinking.

He told me that he wasn’t dating and convincingly claimed not to know why people did. Let me be really clear here:  I asked about just dating, nothing more intimate. Yes, he knew classmates in high school went on dates or wanted to and talked about it.  He knew they did in college. I asked if he knew how his parents met. Like most of us, their relationship started with dating. But he didn’t really see why people did this. There were so many obstacles that he pointed out. Getting together in a certain place and time, which is a key part of the definition of a ‘date,’ is very difficult if one of the people has to be within walking distance of their home. Holding hands seemed unappealing to him, and kissing appeared positively unhygienic. I asked if he would like someday to have a family of his own and a mate. He said that he would but he didn’t know and couldn’t picture what kind of a person that would be or how he would get to there from where he was.

I spent about an hour with him, much of it trying to figure out the level of isolation to which he was willing to subject himself.

I told him he had anxiety. I recommended many things, including trying some medication. I was willing to work with him in any way that I could. He was willing to commit only to think about these choices, or if he wanted to do anything at all. So deeply did he see his perspective as an accurate view of the world that he didn’t see it as a problem in his life. I asked about continuing to live with his parents, and he didn’t see a problem with that, or limiting for school or work to a walking-radius around his parents’ house in Berkeley. Gently, I tried to point out that it might be difficult to meet somebody under these circumstances, but he was blind to this. He didn’t try to reconcile his dream of having a family with his disinterest in looking for somebody with whom to start that family.

Honesty vs.. Hope: An Ethical Dilemma

Lupus pilum mutat, non mentem

At our last visit, Franklin spoke to me in private.  “Will it get better?” he asked

“Will what get better?”

“My parents.”  His parents had recently been suggesting to him that his antidepressant medication cost should come out of his allowance and if he were more like his two younger brothers, star athletes and students, he would be costing them a lot less.  He needed to get away from them any way he could.  He played X-Box video games.  Given his ADHD, this was the perfect escape, and would hold his attention for hours.  But this bothered his parents quite a bit.  They didn’t feel like they were being responsible parents if they let him play video games for hour after hour.  So they decided that he was to play no more than 1 hour.

Most parenting authorities would agree with this restriction, I think.  I, too, think that it’s reasonable for parents to restrict the amount of time a kid is playing video games.  It’s reasonable to limit the time to 1 hour. 

But I know something else:  it’s completely arbitrary.  Yes, there are studies that show that increased screen time is correlated with obesity, social dysfunction, and other problems.  But at what duration do those problems suddenly occur?  Nobody knows or has looked at that.  Is 15 minutes safe?  What about 120 minutes?  Because I believe television is a drug, how much of a dose will cause some effect, and what dose will cause trouble?  Franklin may not have been familiar with the research in this field, but he know in his gut that the 1-hour limit was arbitrary, and that his parent picked it out of thin air.  He also knew that he was unnaturally thin, didn’t snack, got plenty of exercise, and that whatever social problems he had weren’t caused by his screen time.  His parents made another mistake.  They insisted that he reduce his video game time by hours.  They didn’t offer him any alternative ways to spend those hours.  He was doing well in his classes, and keeping up with his assignments.

When he spoke to me in private, he told of many little remarks made by his parents.  They weren’t directed at him, they weren’t meant to hurt his feelings.  They weren’t insults or denigrating.  They were, however, part of the family lexicon.  He recalled this statements in precise detail, and I don’t doubt him at all.  Sometimes they came when a parent was talking on the phone to a friend or relative, sometimes it was a statement between the parents, and sometimes it was something said sotto voce to one of his younger siblings.  Franklin heard them all, and he knew what they meant.  ‘We can’t go because Franklin….’  ‘Why can’t Franklin be more like you?  You never cause us any trouble.’

Families have a jargon all their own.  Big companies have this, the military has this.  Sometime restaurants do, too:  Adam and Eve on a raft famously meant poached eggs on toast.  And wreck ‘em was added if you wanted scrambled.  When his brothers fought, sometimes one would call the other Franklin; a parent would smirk.

So he asked me one of the hardest questions I have been asked.  He asked if it would get better.  The easy way out would have been to say one truth, ‘I don’t know.’  I can’t predict the future, so I would have fallen back on that dependable standard.  But he wasn’t really asking me for a prediction, such as the dates and times for the coming apocalypse, for example.  Just as so many parents do, he was asking my professional opinion.  Based on my training and experience, my intelligence and intuition, what did I really think?  Would it get better?

This is an ethical problem, too.  Do I make him feel better or do I tell him the whole truth as I know it, not just a statement that happens to be an accurate ‘I don’t know?’  When I ask my own doctors if something will get better and they say they don’t know, is this the whole truth?

I knew a more substantial truth than ‘I don’t know.’  I knew from my own life and from the families I have known since childhood, from the families of my parents’ friends in their retirement community.  And I knew from the children I have seen grow from babies to high school students.  Most parents have told me that their teenagers ‘were the same way’ when they were infants, maybe easily frustrated or easy to comfort, restless or relaxed.  In this way, personalities can be surprisingly stable.

In Franklin’s life, I had become about the only person he opened up to.  It was a great privilege and he deserved more than facile answers.  I told him once that I would always be honest with him.  I said, “No, I don’t think it will get much better.”  I don’t know if this was what he wanted to hear.  If I had sounded upbeat and tried to assure him that it was going to get better, would he have believed me?  How long would he give that prediction to unfold if it didn’t get better?  I suspect he expected the easy answer, ‘I don’t know.’ 
Though this was my best professional assessment, rolled into a single No, it wasn’t the whole truth, either.  Dealing with some of the most difficult kids, I can say confidently that even when we can’t change the difficult child, we can change how we understand them and deal with them in ways that make those interactions much less frustrating.  This increasingly educated and empathic approach often helps a lot in reducing the number and intensity of explosions.  In Franklin’s case, I found myself with a type of role reversal.  I told him what I often tell parents of particularly problematic kids.  Pick your battles carefully.  If you know that something will provoke an explosion, then whose fault is it when the inevitable happens?  Change your expectations of them, and that will cause you to change your expectations for yourself.  Be the grown-up.

I reviewed with him the situations most likely to cause battles.  I asked him the same questions I ask parents of difficult children.  What was your last fight about?  Did you win?  If you did, was it worth it?  Did the child learn a lesson and now won’t do that ever again?  (The answer is always no, by the way.)  Do you feel good about it?  Does the child feel good about you because of it?  I ask the same follow-up questions if they didn’t win the fight.  If it wasn’t worth it, if nothing was learned or gained by it, would you like to do it again?  If not, then don’t fight about it.  It takes two to make an argument.  Be the grown-up, be the first to walk away and say you’re sorry.  You may lose a fight but gain a child.

In Franklin's case, I counseled him to play the grown-up.  I suggested that he try to predict what the battles will be about, and decide carefully if they will be worth it.  I'm hoping that just having a plan will empower him and help to stabilize his relationship with his parents.

The Latin proverb at the top of the page means The wolf changes his coat, not his disposition.  Readers need only look as far as their own aging parents.  Are they very different from when you were a kid?  Do they treat you or talk to you so much differently?

Kyle’s ADHD, Part 2

At our meeting, Kyle was, at first, reserved. He wasn't angry at me, I don't think. Nor at his mom, exactly. But he wasn't happy with her for bringing him or having to have this conversation with a doctor. Clearly, this is something that his mother had brought up with him before and he had made his feelings on it clear to her.

I describe meeting Kyle, 13, in the last post. His mother was frustrated with him for underperforming his capabilities at school. His standardized test scores were generally much higher than his grades. While not in serious trouble, he had a lot of detention last semester for talking in class and lapses of attention. These lapses included failing to hand in some assignments, forgetting work and exams, and not paying attention in class. By all accounts, however, he was generally well liked by students and teachers.

Especially when doing homework, as the effort dragged out, his mother would watch him stare into space, tapping his pencil and leg in complicated rhythms.

She assembled data on his attention issues from teachers, from his father and from herself. She also secured for him some tutoring which focused on organization and study skills.

I clarified my position to him as soon as I asked his mom out of the room. I told him that I would tell him exactly what I thought, and that I would tell him first whatever I was going to tell his mom so that there would be no surprises.

What I learned when she wasn't in the room was apparent in the teacher comments. He didn't pay attention in class like he should, and was often socializing. He admitted not handing in some assignments, saying that he kind of lost track of them, not that he had real difficulty doing them. None of his teachers mentioned the pencil-tapping. He said he never really did that in school, it was just at home during the tedious homework time. He also pointed out that in the last couple of weeks he had been engaged in an after-school program, during which he nearly always finishes his homework. He doesn't socialize so much there because most of the other students aren't in his class or aren't even in his grade. And they want to get their homework done, too. For these reasons, he felt that his problems were largely solved.

As promised, I told him the truth. According to the teacher and parent questionnaires, he met the arithmetic criteria for an ADHD diagnosis. His mother, he and I agreed, would probably like me to say that he had it and needed treatment. But there was no way I was going even to suggest treating him when he didn't think there was a problem. And I didn't want to suggest to his mother that it was necessary if I didn't believe it and that would only increase the amount of conflict between him and his mother.

But I didn't want to lie to his mother, either. So when she returned, I told her that Kyle definitely does have some traits in common with people who have ADHD—as we all do. He meets the numerical criteria according to the questionnaires that were answered about a month earlier. But I explained that many intelligent people with short attention spans and occasionally annoying habits have other skills that help them compensate for these weaknesses.  In Kyle’s case, he has now gone a full two weeks without a missing assignment or detention. He’s getting homework done after school, before he gets home. That alone will cure him of most of his school underperformance as well as the dreaded pencil tapping.  (Which seemed to bug mom more than anyone else.  In the previous post, I included a video of a high-school student whose peers appreciated his talent.)

Yet this was clearly an optimistic scenario given what has been going on earlier in the school year. The compromise I struck with Kyle in private was that he would agree to return in 6 weeks and revisit the issue. If his optimism were justified, he’d still be current with his homework and assignments and not spending time in detention. His grades wouldn’t have been lowered by penalties for missing and late assignments. If somehow things didn’t turn out the way he was anticipating, he might have to admit there’s a problem. His mother appeared pleased with this plan (I haven’t spoken to her in the few days since the visit, however). Kyle seemed OK with it, and I think he knew it was about as good a deal as he was likely to get.

Does he have ADHD? In some ways, yes. Last semester, definitely.  But if you have a problem that’s fixable with the diligent use of a day planner and some coaching, do you need medication? Should you get a diagnostic label?

Off the record, just between us (I didn’t tell him or his mom any of this), I have a different take on this. I don’t know if it’s right or not, and I only met this mother twice and the boy only once. I think it’s mostly his age and developmental stage, mentally and physically. I think 7^th and 8^th grades are difficult transition years. The teachers try really hard, but the boys are discovering more interesting distractions. Yes, the obvious. But also new and confusing rules of social standing. (For boys, the only typical constant is sports. Those few boys of nearly any age who are good athletes often have a natural peer group and image among their peers that is reasonably stable.) Kyle was like the majority of boys, perhaps. Searching for a place among his group, finding his people. This is also the age when aspiring to be part of the wrong group can be ominous. But that wasn’t him. The highest priority for him is his friends that will be his companions into adulthood, at least for this part of the journey. Bright as he was, he was still developmentally-stuck in concrete thinking that prevents him from seeing that the homework for 7^th-grade History—that would only take him a half-hour and he should just get done, for goodness sake—will be dust under his feet long before he forgets the beloved friends he got in trouble with. When he told his mother that listening in class just wasn’t that important to him, she was shocked…but he might be right.

Looks Like an Attention Problem: Part 1

The official diagnostic criteria for ADHD require that symptoms start before age 7.  In boys, particularly the hyperactive ones, they usually show up in my office while still in elementary school.

So I was skeptical when I met Franklin, 15 years old and brought at his own request for an ADHD evaluation.  Most kids don’t think there’s something ‘wrong’ with them.  Parents are reluctant to think this too, and most don’t want to think that their child might benefit from medication.  So in the context of both patients and parents reluctant to get this diagnosis, I couldn’t help but wonder if this teenager had a substance problem.

Indeed, his mother admitted that he had been requesting this evaluation since 7th grade, but his grades had been good and his mother couldn’t imagine that something could be wrong.

But I have to admit he looked the part.  Rail-thin, and constantly in motion.  When his knee stopped moving, his fingers would tap.  He fidgeted constantly in his chair.  I asked about what his classroom work was like and found the same classic answers.  He could do the work, but often forgot that there was an assignment, forgot to hand in assignments he did, and never knew when there was going to be a test.  His mother bought him an organizer.  Then another and another as he lost them in series.  When asked about a family history, she took the opportunity to  tell me that his younger sibling had no such troubles, and excelled in school.

In his favor, he hasn’t been a conduct problem.  He wasn’t constantly being sent to the principal’s office.  I sent them home with questionnaires for parents, teachers, and Franklin.  But before they left, I told his mother that I wanted to talk with him privately.

As fidgety in private as he was with his mother in the room, he told me that he was frustrated by attention issues.  He wanted to do his homework, but every time he sat down to do it, he’d end up in another part of the room, doing something else—within just a few minutes.  But the more he described the attention issues, the more his voice changed, and his face changed.  I asked him about depression symptoms, and he paused.  He thought he was depressed.  I asked if he thought about suicide.  He said he did, but didn’t everybody?

The questionnaires came back with a clear concentration of attention problems.  When I asked them about his attention symptoms, they clearly did start long before he was 7.

Though I think ADHD is too casually diagnosed and managed too haphazardly, it has been treated and studied for decades.  So there are really good data showing that careful medication improves just about everything.  Unmedicated teens with ADHD have higher rates of dropping out of school, substance abuse, suicide, failed relationships, teen pregnancy, and many more interactions with the criminal justice system.  So for the right person, in the hands of the right doctor, these medications are life-changing and are extremely effective.  Franklin’s core attention symptoms were so focal that I thought he would really benefit from a medicine that addressed these symptoms directly.

But I told him directly that the fact that he had been able to get by in school so far made me very optimistic that we’d figure out the attention part at some point.  But at this moment, I was most concerned about his depression.  I told him that I wanted to treat that first, and when the depression was under better control, I’d focus on the attention.  With his permission, I explained the plan to his mother.  He looked tremendously relieved.

In Franklin’s case, his attention symptoms were quite specific.  He was impulsive, forgetful, disorganized, hyperactive, and unfocused.  It would have been easy to treat this directly, and probably would have helped him feel better.  But I was worried about him, and that makes all the difference.

Depression, unlike Franklin’s attention problem, is not a focal problem.  It’s a pervasive stain that taints all the aspects of a persons life.  When you’re depressed, things planned for a couple of weeks in the future just don’t matter.  So they lose their importance.  If you don’t think that your life is going anywhere in 5 years, what possible meaning could the test in school have for you?  Why would your homework matter?  And if your class lapses even momentarily into boredom, paying attention to anything else seems like a perfectly logical choice.  As depression gets more severe, this time horizon gets closer.  When it doesn’t matter what happens that day or that hour, there’s not much that will motivate you to organize a whole semester of assignments.

I prescribed an antidepressant, which fortunately took effect within days.  If his mood stabilizes, I’ll start him on an attention medication.







The photograph at top is a portrait by Felix Nadar, the finest French portrait photographer of the 19th century.  It's of his son.  Except, perhaps, for his clothing, it is certainly a completely modern photograph.  It is in my collection, and used to belong to Andre Jammes.

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.