February 23, 2010

Ethical Dilemma: Do the right thing or keep the patient?

Robert is one of my troubled teenagers.  To him, his parents seem outrageously restrictive and inflexible.  No particularly innovative insight is needed to recall the times in ones life when parents seem less like a tugboat, pushing and pulling us ahead, and more like an anchor, holding us behind.  He came to me for an ADHD evaluation, in the course of which I noticed his itchiness, and thought he should get some allergy testing.

For most of his 15 years, his family moved every few years as dictated by his father’s diplomatic career.  Now stationed here, his European parents have lived all over the world.  They had just begun a stay in Thailand when Robert was born.  He was scrawny then (as he is now) and became jaundiced.  I have written previously about jaundice in a newborn.  Though his parents didn’t remember the levels in his blood, they were told that his jaundice was quite serious and that the baby needed a blood transfusion.

The idea behind transfusion for this problem is simple enough.  If we take out the blood that’s packed with bilirubin--the natural breakdown product of hemoglobin that can build up in the blood--and replace it with blood without bilirubin, then it’s much less likely that bilirubin will get deposited in the baby’s brain.  It’s the treatment of last resort, and his mother was told that it was necessary at the time.  This is 15 years ago, remember, and technology has improved since then.  Even so, I’m not experienced enough in international medical practices to know the level of vigilance used to screen donated blood in most of the world.

When I proposed doing some blood tests for allergies, given his history of itchiness and runny nose, his mother asked if I could do a test for Hepatitis.  She told me about the tranfusion in Thailand, and I added the blood test to the laboratory order form.  His test result indicated that he had been immunized against Hepatitis A and B.  The test was ambiguous for Hepatitis C.  I looked up his specific test result, and the references I looked at said that he should get a follow-up test or two to be sure he didn’t have it.   This didn’t seem ominous to me, just something that needed to be done to be thorough.

I called his parents to discuss the tests, and mailed them copies of the test results and a printout of the reference interpretation that indicated the necessity of another test.  I tried not to make a big deal out of it--but I was clear about what needed to be done.  I asked his mom if she wanted me to mail her another lab form or if she’d pick one up in the office.  She said it would have to wait.  She explained that it would have to wait until we do another round of allergy or other blood tests.

She asked me not to tell him about the test.

Huh?  It’s not like the lab sucked a half-dozen tubes of blood out of his arm without him knowing about it.  She told me that he doesn’t know anything about the transfusions, the jaundice.  Somehow, she said, it never came up.  I was confused--wasn’t he there when I filled out the lab form?  Where was he when his mother told me the story about the jaundice?  I couldn’t remember.  During the long visit, he got up to go to the bathroom.  Was that when she told me the story about him as a baby in Thailand?  She never told me not to tell him anything, and I just assumed….

I was silent for a long time on the phone, and she asked if I was still there.  I do not withhold anything from my teenage patients.  Already struggling with trust issues (parents usually try to convince their teenagers that sex is lousy and nobody should think about it), I have found that the only dependable way to establish trust with a teenager is to be 100% open with them all the time.  If they want to keep something from their parents, I try to use my best judgment to support them or to explain why I disagree and push them to do the right thing.  I am always very clear about the secrets I cannot keep, such as those making me fear for the child’s safety.  It doesn’t work the other way around:  when I am occasionally asked by a parent to keep something from the teenager, I just say no.

Many times, for example, I have been asked by a parent to test a child for drug use.  I tell them that if they want to find out if their kid is using drugs, ask the child directly.  Perhaps surprisingly, many teens will be quite honest about it.  If they aren’t, the parent might want to try another tactic.  But I am the child’s physician, not parole officer.  [There are circumstances, most of which occur in emergency rooms, in which a drug test is sometimes done without consent.  That’s true for adults, too, by the way.]  I have never tested a competent teenager for anything without telling them about it.  I felt manipulated by the mother.

I told her that I thought this was a bad idea.  If he had hepatitis and she (and I) knew about it, surely she would tell him.  She agreed with this but noted that if he didn’t, why should he have to worry about it?  There’s usually only a few days between lab test and result, I pointed out.  That didn’t seem like a lot of worry. 

I looked at it a different way.  If he didn’t have the disease, yet found out that we had tested him for it, the trust I had built with him would be gone, and could never be re-established.  And the trust of his parents would be a mess.  I told his mother that this was a dangerous plan from the point of view of her relationship with her son.  She said that he was already unhappy, and didn’t think he could handle the anxiety.  That upset me.  Many studies on adults clearly show that the paternalistic witholding of bad news is universally counterproductive.  Paradoxically, it increases patient anxiety (we tend to fear worse scenarios than the actual bad scenario), and damages the relationship between patient and whoever it is who was supposed to be telling them the truth.  Often that’s a doctor, but it might be a family member.  So her assumptions about how this bright, sensitive teenager would take the news either way was simply misinformed.  Inevitability is the elephant in this room.  Even if I don’t tell him, he’s going to find out.  Maybe not today, not tomorrow, but someday he will.  And when he does, she may lose him over this.  Who is she really protecting?  His delicate sensibilities or her denial of a lifelong lie that she would now have to confess to her teenager?

Getting to the point, I am  screw ed.  If I take it upon myself to tell him, she’ll fire me and the damage to the relationship that his mother fears will come about.  If I don’t tell him, I am facilitating this lie and being bullied into doing the wrong thing.  And when he does find out, I’ve lost him just the same.

I did my best to convince her to have a heart-to-heart with this nice boy and apologize profusely for her mistake.  With the troubled kids I see, they get themselves into this same situation all the time.  They don’t do the big project for their least-favorite class, but say they did it, thinking that they will catch up in a few days.  Then it’s a week overdue, then a month, then suddenly mom and dad get a call about summer school.  Maybe we’ve all been there, maybe there’s a MasterCard with our name on it about which this all seems hauntingly resonant.  It’s the human condition, and I was sympathetic to her situation.  But I was angry about being pulled into it unawares.  I was tricked.  How can I trust her in the future?  How can her son?

Now what do I do?

Please comment and let me know what you think I should do.


  1. Dr. Wolffe, you have a very pro-child approach to your practice and to many parents your advocacy for children is a foreign concept. It seems that upon accepting patients that you should be very transparent about your policy. I understand that a rational person can infer this information after a meeting with you, but many others may not unless you spell it all out. I would stand my ground and through this action maybe the parent will learn something from your passion for treating children with respect.

  2. Tell him. Kids need to be able to trust their doctors. You'll know you've done the right thing and something positive will come out from it. And, they'll both have a good example of being truthful.

  3. Do the right thing. Whether the parent likes it or not, she sought you out for your wisdom and help. Just like I and your other parents/patients we come to you for your honesty, integrity, wisdom, kindness and your principals. You must remain true to yourself, and do the right thing.



Please let me know what you think. Do you know a child or situation like this?