Is ethical for parents to refuse surgical treatment for their child?

The principle of autonomy is one of the four guiding principles of medical ethics, the others being beneficence, nonmaleficence, and justice. It means that patients have the right to decide what is done to their own bodies. For children under eighteen, the age of majority, this means their parents decide for them. What happens when parents refuse a treatment that their child’s doctors recommend? (The right of a minor child himself to refuse such treatment is an interesting and knotty related issue.)

If the doctors believe the parents are not acting in the child’s best interest, they can go to court and try to convince a judge that the court should take temporary custody of the child and appoint a guardian who will allow the treatment. I have been involved in cases like that from time to time. Usually they involve parents who, often for religious reasons, refuse a fairly standard medical treatment. A common example is a blood transfusion in a family that belongs to the Jehovah’s Witnesses. The medical treatments at issue are generally standard, well-accepted ones.

But what if the treatment the doctors want to do is a complicated, high-risk one? Perhaps a treatment that was once a highly experimental one, but which is now more mainstream, although not entirely so? What then? Do the parents have to allow the treatment or risk having the courts take custody of their child?

A recent article in the Lahey Clinic Medical Ethics Journal addresses just such a situation — surgery for an uncommon condition known as hypoplastic left heart syndrome (HLHS). This condition is where a child is born missing a functioning left ventricle, a key pumping chamber of the heart. Several decades ago we had no treatment for the condition — babies were kept comfortable, but they all died within a few weeks of life. Then a surgical procedure to treat this condition was devised by Dr. Norwood in 1981. The outcomes from this procedure for the first few years were dreadful, with most children not surviving. Over time, however, heart surgeons got better at doing it and the science of pediatric intensive care advanced considerably, so the majority of children now survive the initial surgery.

But what is in store for them is at least one more major surgical procedure, called the Fontan procedure, which, if all goes well, allows them to live at least through childhood and usually to adolescence at least. Many do well subsequently, although it is common to need additional surgeries. However, for many children with HLHS, their heart fails and they then require a heart transplant to survive. Most children on the waiting list for a heart transplant die before they get one.

The article from the Lahey Clinic Ethics Journal asks if it is ethical for parents, once they have learned all about this complicated and high-risk series of surgeries, to refuse and allow their infant to die. In other words, is the surgical treatment of HLHS so mainstream that doctors should go to court if parents refuse? I know cardiologists who think so, and the author of the article describes such a situation. But I also know several cardiologists who say they would never choose the surgery for their own baby. These are doctors who are in the trenches and know exactly what the Norwood procedure and its subsequent course can mean in suffering for a child. They would not put their child through that. They feel it is preferable to allow a baby to die than to subject a child to years of often painful treatments, only to have a high risk of dying as an older child or adolescent.

I don’t know what I would do. I’m too old to have any more children myself, but I could have a grandchild in the future who is born with HLHS. There is no easy answer to this question. Many medical treatments, bone marrow transplant for example, are now standard after years as experimental treatments. Even if surgery for HLHS crosses that murky divide between experimental and standard, there are others that will confront us with the same question.

For HLHS, I agree with the essayist in the article: I think parents should be allowed to refuse the treatment.

Christopher Johnson is a pediatric intensive care physician and author of Your Critically Ill Child: Life and Death Choices Parents Must Face, How to Talk to Your Child’s Doctor: A Handbook for Parents, and How Your Child Heals: An Inside Look At Common Childhood Ailments.  He blogs at his self-titled site, Christopher Johnson, MD.

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  • http://twitter.com/Visitkarte Kathrina Maier

    Of course they should have the right to refuse this kind of treatment. If they couldn’t, what’s the point in asking for consent at all? Heck, I’d refuse that kind of treatment for myself, if I could.

    • http://twitter.com/ChrisJohnsonMD Christopher Johnson

      Well, that’s the point, really. Adults have the right to refuse any treatment they like. So you could do that for yourself.

      But when parents are acting on behalf of their children it gets more complicated. As I pointed out in my essay, there are cardiologists who believe that surgical treatment of this condition is now the standard of care and who would go to court to ask for a court order to take temporary custody of the child and allow the surgery. Others disagree, believing that surgery is not the standard of care; rather, it is one ethically valid choice, the other being no surgery.You should understand that physicians do go to court from time to time to ask the legal system to intervene to compel treatment that parents have refused. A common example is a blood transfusion. Parents have also been held legally culpable when they have denied standard treatment to their child, such as insulin for diabetes.The reason for my interest in hypoplastic left heart treatment is that it really does stand, I think, in that grey zone between standard treatment and experimental treatment. In that case, I think both choices are valid ones, although some strongly disagree. I have met many parents of children with this condition. More than a few have told me that their child’s doctors did not really give them the option — they simply explained what surgery the child needed, minimizing the enormity of what was to come. Some have regretted their lack of true choice.

      • Anonymous

        >>there are cardiologists who believe that surgical treatment of this
        condition is now the standard of care and who would go to court to ask
        for a court order to take temporary custody of the child and allow the
        surgery>>

        This is why I’d have an abortion if I discovered a child I was carrying had HLHS.  Ugly disease, ugly surgeries.  Those patients who do well are truly miracles, but no one can guarantee a miracle.

        Additionally, given that the U.S. currently has a healthcare system responsible for alarmingly high rates of bankruptcy, how dare a self-righteous physician impose not only suffering for the child against the parents’ wishes, but financial ruin on a family?  Unless a family is well off with excellent insurance, or very poor on Medicaid, the financial impact of a chronically ill child is crippling.  Let’s see some financial consequences for physicians who initiate court orders of this nature.  You think that child should live, regardless of the parents’ wishes, you pay for it, doc.

  • http://www.facebook.com/jonathan.marcus.ca Jonathan Marcus

    Always err on the side of autonomy if there is any question IMO.  Choice is usually the best option.

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    Mortality for hypoplastic left heart syndrome, after reconstructive surgery, is considerable.

    In-hospital mortality: about one out of four die in the hospital.

    http://www.ncbi.nlm.nih.gov/pubmed/16585328

    One-year mortality, one out of two (51% survival) are dead within a year. 57% dead in two years (43% survival). About six out of ten (39% survival) are dead in five years.

    http://circ.ahajournals.org/content/102/suppl_3/III-136.full

    Those that survive, have a hard life of multiple surgeries.

    I agree with the author, it’s better than what it had been in earlier
    days. The majority survive the surgery, yes I agree. However, the
    majority are dead in two years. I’m left feeling the author made this sound
    easier than it actually is.

    This is not like the members of certain religious faiths, like Christian
    Scientists refusing antibiotics for community-acquired pneumonia, or
    surgery for appendicitis. If a parent chose to let their HLHS baby die
    of untreated HLHS, I have to admit, I can see their point.

    I don’t know what I’d do if it were my own child…..all this is easy to say when it’s not your kid.

  • http://www.facebook.com/profile.php?id=734366456 Brenda Adler

    It’s funny that people always question a parent’s right to refuse, but never a parent’s right to consent not matter how risky the surgery, treatment, etc.

    Actually it’s not funny at all.  In some places it seems that pets have more rights against unnecessary surgery than babies.

    Also, how can the courts justify only temporarily taking over the decision making?  When faced with similar situations the parent will continue to make similar decisions, these parents aren’t temporarily ill physically or mentally, and once recovered will be able to go back to “doing the right thing”.    So what’s the court saying?  It seems to me the court is saying that “even though you are fully competent to make this choice, I don’t like the choice you made so I’m going to force my decision on you in this instance”.  Sure doesn’t sound like a great precedence to me.

    • http://twitter.com/ChrisJohnsonMD Christopher Johnson

      Brenda:

      When the court takes temporary custody, the court is saying that, in the court’s opinion, a particular decision by the parent(s) is not in the best interest of the child. This sort of thing happens not infrequently in most large PICU practices — at least once a year or so. The court may appoint a guardian who makes medical decisions for the child.

      I’ve been involved in many situations like this over the years, and I have always been impressed by the way judges I’ve dealt with approach this decision. They do make it reluctantly, and only if the best medical evidence is that the child’s health would suffer. The rare exceptions are the things that make the news.

      As I wrote, I don’t think parents declining surgery for hypoplastic left heart syndrome meets that standard, at least not now. 

    • Anonymous

      The paternalistic health system at play. Allow families the right to make decisions in alignment with their values in these nebulous matters that befuddle even the best & brightest doctors & lawyers.

  • Maurice Bernstein MD

    Christopher wrote: ”
    The right of a minor child himself to refuse such treatment is an interesting and knotty related issue.”  The minor child has from an ethical point of view the autonomy  to provide assent or dissent to the offer of a procedure and should perhaps even have the right to make a final personal medical decision alone, regardless of age and independent of the views of the parents.  Why?  Because some arbitrary age should not be the cutoff point for personal medical decision-making.  The same criteria for determining capacity to make personal medical decisions should apply both to adults and children.  The patient is first educated by the physician regarding the details of the procedure and its possible outcomes. The physician must then establish by questioning whether the patient can repeat what was told and then followed by the patient demonstrating understanding regarding the facts. Finally, with the patient’s decision: the physician must have the patient explain the rationale for such a decision and it should be accepted if logical even if the decision was different than one which would be made by the doctor, parents or others. Thus, in total, If the patient demonstrates the ability to repeat, to understand, to provide a logical explanation of the decision and irrespective of the age of the patient, and finally irrespective of the decision itself, the patient can be said to have the capacity to have made that very decision.  ,,Maurice.

    • http://twitter.com/ChrisJohnsonMD Christopher Johnson

      Your point is a reasonable one ethically. But it is not currently the law.

      However, if you follow the link in my essay you can read about a situation in which a judge decided just as you suggest — that an intellectually mature minor was fully competent to decide his own treatment.

      • http://www.facebook.com/profile.php?id=655523194 Jeanine Satriano-Pisciotta

        My daughter was 17 with a bleeding, bacterial colitis and risk for a blood transfusion. She told the MD she wasn’t taking any blood. ( she donates but refuses it??) Her H&H was dropping, they had fluids and 3 antibotics on board, her BP was also dropping. I told her I would overide her wishes if it came to it. The MD decided on giving her a bag of Venofer, and hopefully she would stop bleeding. He was in a weird position on this. Thankfully , the antibotics took hold in time and she stopped bleeding.
         Years ago, she told me if she was ever really sick with cancer or in a coma, that she didn’t want treatment and she was about 9. She has been like this since then and understands the risks. She had a friend at the time with a brain tumor and saw how sick the treatments made her. But I’m glad we have not had to do this, otherwise I believe I would have gone against her wishes.

  • Anonymous

    What about a case where the surgery is life
    saving and the child is 16 and has an abusive parent who refuses to sign for
    the surgery knowing the child will die without it (ruptured appendix with peritonitis)?
     I was that child and my mother was
    mentally ill and severely abusive. Lucky for me the surgeon got a court order,
    operated and saved my life. Not all parents are loving or have the child’s best
    interest at heart. Thank heavens, the surgeon did have my best interests at heart. After a time in ICU post op and excellent care, I went on to have a long productive life as a nurse.

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