COMMENTARY

Parents vs Doctor: Who Is Really in Charge?

Arthur L. Caplan, PhD; Moshe M. Cohn, MD; Christopher M. Johnson, MD

Disclosures

March 21, 2018

Arthur L. Caplan, PhD: Hi. I'm Art Caplan, head of medical ethics at the New York University School of Medicine. I want to welcome you to Medscape's ongoing series, Both Sides Now. Today we're going to take a look at a controversial topic: Should physicians override parental decision-making authority in the case of their sick child?

In the vast majority of cases, medical treatment decisions are made for children without much conflict between families and physicians. However, in an important minority of cases, conflict arises to varying degrees. Several recent cases in which physicians and parents disagreed about treatment decisions have made national headlines.

The case of 11-month-old Charlie Gard is one. Charlie suffered from a very rare mitochondrial disease. He wound up on a ventilator at the Great Ormond Street Hospital for Children in London. His parents wanted their son to receive an experimental treatment. The hospital took them to court, believing that this experimental treatment wasn't really in Charlie's best interest, and that he should be removed from life support and be allowed to die. In April 2017, the United Kingdom's High Court ruled that it was in the infant's best interest for his treating clinicians to remove the ventilator. Mechanical ventilation was withdrawn and the infant died the next day.

In another recent case, 18-month-old Ezekiel Stephan died of meningitis in a small town in Manitoba, Canada, after his parents chose to pursue alternative medicine. The parents were put on trial for child neglect.

Last year, a Michigan couple were charged with involuntary manslaughter. Their baby, Abigail, was delivered by a midwife who didn't see any problems when the child was delivered, but the next day the midwife saw that the baby was severely jaundiced. She urged the parents to take the baby to the doctor or to a hospital. The parents didn't do that and the child died.

The issue of overriding parental authority for a sick child is clearly not black and white. There's plenty of grey.

Today we have two guests who can shed light on the pros and cons of this complicated topic. Dr Moshe Cohn is assistant professor of pediatric critical care and pediatric palliative care at the Hassenfeld Children's Hospital at NYU Langone Medical Center. He feels that in certain circumstances parental authority should be overridden by physicians. Dr Chris Johnson is medical director of pediatric intensive care at CentraCare Health System and clinical professor of pediatrics at the University of Kansas. He supports parents having decision-making authority in certain circumstances.

Let me welcome both of you and thank you for being on today's program.

Moshe M. Cohn, MD: Thanks, Dr Caplan.

Christopher M. Johnson, MD: It's good to be here.

Caplan: I saw a statement from the American Academy of Pediatrics not too long ago that said that you have to be a little wary about the ability of parents to make decisions for their kids in high-stress situations. It's a generalization; there are all kinds of parents, all kinds of stressful situations. But generally speaking, what's your view about their ability to even participate in decision-making for a very sick child?

Cohn: For the most part, we want to assume that all parents are thinking about what's best for their child in every situation and even in the most stressful situations. The issue really is in the extremes. There are data from the world of psychiatry about adult patients, in particular in terms of their capacity to make medical decisions in their own best interests. I think that does apply in the case of parents who are at the extremes of stress, whether it's anxiety or depression—especially in parents who may have a history of mental illness, but also in parents who are suffering from grief or even denial. Severe denial of their child's condition can really impact their ability to make even adequate decisions.

Caplan: When you say "denial," you mean they're not recognizing [that the child is] sick or they're overly optimistic about the chances of recovery?

Cohn: Denial in the sense of the severity of their child's illness, especially in the likelihood that the illness is terminal. I think that presents an extreme situation that, for any parent, is horrible and can really tax their ability to make decisions.

Caplan: Chris, you've been in a pediatric ICU setting for many years. You've dealt with lots of parents from different backgrounds—different cultural, economic circumstances. With a very sick child, what's your view about the ability of parents—I'm not trying to say that every parent is like this, but generally speaking—to engage and be involved in decision-making?

Johnson: My experience after doing this for 35 years is that they are surprisingly competent. It's interesting, when you first meet a family and you see them. Sometimes the parents are very young and you think that there are going to be problems, and for the most part you're astonished at how well they do.

There is a large cultural component. In several places where I have practiced, you certainly see differences, particularly if they have a supportive extended family to help. I'd have to say that I've only had a few instances in my career where we've been at a terrible impasse. It's astonishing to me how little that happens.

Talking and Meeting With Parents Is Key

Caplan: Are there things that can be done to help the parents along, to make them less stressed or get them to be more engaged, or even, as Dr Cohn said, maybe to make them more realistic? Are there ways that we should be thinking about in dealing with any parents, whether it's to get a vaccination or something that's going to happen in the pediatric ICU, about how are they best engaged?

Johnson: I think this is something that pediatric intensivists as a group do a very excellent job of. I have colleagues in adult intensive care who get into these sorts of conflicts all the time. I think the difference in pediatrics is that in pediatric ICUs, the physicians are much more involved in the day-to-day, even minute-to-minute interactions with the families. Now, of course, there is variability there; if you practice in a larger medical center with large numbers of layers of trainees and residents and so on, it can be more complicated.

I found, in my career, that just coming in a lot and engaging in the sort of thing that psychiatrists do—nondirected questions, just conversation to try to get a feel for where they're at—and then dealing with them multiple times throughout the day and even into the night [helps the parents gain trust]. I've had many experiences of parents who are initially quite suspicious or even hostile, and with persistence and patience, you can break through that.

The key is that they have to come to trust you, so that when they ask your opinion—and one breakthrough question I often hear is, "If this was your child, what would you do?"—you have to deflect that a little bit. It's hard to generalize, but mainly you try to get to know them as best you can over multiple times during their admission, day or night.

Caplan: Do you agree with that?

Cohn: I think, for the most part, that that's true. I do think that it probably varies by region. I suspect that despite my experience locally in the New York metro area—and I've practiced elsewhere—that it does make a difference just being there, being present. Traditionally, I think intensivists in particular were not always in house, and in pediatrics that's changed. Yes, being around, being available, can certainly engender trust.

At the same time, I think that the nature of how we practice has changed so that it's much more team-based than it used to be. Gone are the days of the solo practitioner and the savior-of-the-world physician. We rely heavily on our nursing staff, nurse practitioners, physician assistants, and residents to a large extent, and they also have to be involved in the same way.

Consistency of Message Among Clinical Staff Is an Issue

Caplan: One thing I've noticed with adult intensive care over the years is that not everybody's always on the same page on the team. Somebody can send a message from nursing to the patient's family during the day and they hear something else from a nurse who comes in on the weekend or at night. Do you see that problem arising? Is there a way to make sure that everybody is consistent in what they're telling the parents?

Cohn: Yes, we do see that. Unfortunately, it's hard to know sometimes what the exact cause is; it requires some investigation. Sometimes there are issues of communication, like we were just talking about, where the loop of communication hasn't been closed among the practitioners, nurses, physicians, etc.

Sometimes, however, it is an outgrowth of nurses' training, much more so than we see in physicians, in having empathy and identifying with the families and being at the bedside the whole time. Sometimes that results in the nurses potentially disagreeing with the overall plan—let's say, from day to night and bringing in their own value set that may be in line with the parents'. Sometimes, it also has to do with a different level of understanding which the nurse may actually know better. Having been at the patient's bedside the whole time, they may actually have information that the team is not aware of, so that can also complicate things.

Caplan: How about consistency of message, Dr Johnson?

Johnson: I've certainly seen that. I've practiced most of my career in a very large unit with fellows and residents, and now I'm in a somewhat smaller unit. Sometimes there's a problem of people choosing sides on the team. The parents are very good at picking up on that tension if there is disagreement. It's not just the intensivist and the nurses. I think the larger problem with that is with consulting services.

Personally, I try to go in frequently so that even though there is a team, the family knows who is in charge of the team. I also want to make it clear to them that I'm happy to talk with them at any time, no matter what I'm doing in a day. They don't have one shot at me at rounds, I'm happy to come back and I usually do. Even in the night I'm happy to talk on the telephone if I'm not physically in the hospital.

Caplan: How do you manage requests for, let's call it, both the alternative and the experimental?

Cohn: It happens all the time. We're fortunate at our hospital to have an integrative health service, where you have the availability of complementary and alternative medicines or procedures in addition to standard medical care. Probably the most frequent in this era is marijuana. I see that more in particular because we have an epilepsy center at our institution. We see a lot of patients who, unfortunately, have really bad seizures, but we also see it in our oncology population, for beliefs that it's curative of cancer but often for pain as well. Practicing palliative care, obviously I'm going to see that as well.

Those things, whether it's marijuana or other herbal [preparations] that people can obtain over the counter, unlike marijuana, I think are quite reasonable.

When there are [treatments] that are either outside the realm of possibility, either for our facility or for any facility, or especially when it's something that is untested and likely has no relation to what we're trying to treat, that's when I would get concerned and we would need to have a different conversation.

Caplan: Yes, what about that, Dr Johnson? You get somebody who's seen or heard a report of something, they're mixing up the fact that this drug looks promising for X, but their child actually has Y. But they're demanding [the drug for] X. How far down the road are you willing to go to maybe open a door for them?

Johnson: I think the background comment to me is that most people don't realize what intensive care is. They don't realize to what extent intensive care is really just supportive until a person heals. If I were to walk into the unit now and look at the litany of things we're doing—a child on a ventilator with influenza, for example—very little of what I'm doing is actually curing anything. What I'm doing is supporting the body systems until they recover.

The bigger issue is when they, as Dr Cohn is mentioning, demand therapy that is experimental-like. I saw a case most recently in a child with a malignancy for which the hematologist-oncologist had nothing further to offer. They investigated around the country with phase 1 trials and there was nothing available. The family wanted to continue chemotherapy, which was clearly causing suffering in the child. We declined to do that.

When a Child Is Suffering

Caplan: Do you think that's an issue of conscience or is that an issue of saying, "Look—at some point, I as the physician have to set a limit over what's just too dangerous or not in the child's best interest"?

Johnson: I think that we have an ethical standard in medicine that we cannot cause suffering that has virtually no prospect of a benefit. There are some treatments that you can think of that would not necessarily cause suffering but still have a dubious benefit, if any; that's a different category. When I evaluate requests for what parents want, that plays a very large role in my mind.

Caplan: What about you, Moshe, when you have a parent who's adamant: "If this kid's got a glioblastoma or an end-stage blood cancer, I want you to continue aggressive intervention"?

Cohn: Obviously I can't necessarily speak for other subspecialties, but I think we would want to be open to at least having a discussion. My bias in being a palliative care doc is that communication becomes key to all of these conversations. Remember that we're living in an age where whatever we say in the hospital is going to have some website or Doctor Google that's going to trump what we say.

If we are not experts in using rocks and pebbles from my driveway to treat cancer, and the parents aren't either, then perhaps we bring in someone who might have something to say and then maybe come to an agreement. If it's simply the push because of some underlying reason—which I think psychologically, emotionally, culturally is usually the case—then we have to take a step back and reconsider whether we should even entertain the possibility.

Caplan: I'll ask both of you this: Have you been asked whether you would pray with a patient or a family?

Cohn: All the time.

Johnson: Yes, although I'm a Quaker, so praying consists of saying nothing.

When Religion Plays a Role in Parents' Wishes

Caplan: Some of the cases that we began the show talking about involved [situations of parents thinking that] God doesn't want this child to live or prayer might be more effective than medical intervention. How do you manage that when faith is the driver for the parent?

Johnson: The answer to that is fairly clear-cut, I think, as these cases have shown. That is that an adult of 18 can do anything they want, but we have an interest in the child. About 10 years ago, there was an interesting case of a child in Minnesota who wanted to forego cancer therapy. After extensive interviews, the judge basically certified him as an emancipated minor and able to make his own decisions.

In general, a request like that to forego a known effective therapy—ultimately, I think we might have to go to court, but we have to take a stand against that.

Cohn: We do see the religious objections to treatment sometimes or a religious request for treatment, such as the classic cases of blood transfusions and Christian Scientists, and in terms of diabetes and famous cases of insulin refusal. But cases where religion is specifically used to push for experimental treatment because [the parents] believe that God or another deity is going to make a cure possible, are definitely more challenging. Meeting parents on that plane requires outside help, because inasmuch as we want to allow them to advocate for their child, it may harm the child if we allow it to go that far.

The flipside is when there is not a consensus in the medical field about certain treatments—the risks versus benefits; outcomes; and perhaps most contentiously , brain death. And that becomes much more complicated.

Ethics Committees Can Provide Assistance

Caplan: Do either of you feel comfortable going to an ethics committee to get help or assistance? Have you ever done that? Has it proven useful in these rare but contentious cases, Dr Johnson?

Johnson: Yes, I do that not infrequently. Partly because like most ethics committees, ours here and the one that I had in the past involved a fairly diverse group of people, a good chunk of whom are not even in the medical field. I think I've had several instances where that's been extremely helpful. I'm only aware of Texas, where they have the right to completely overrule on the basis of an ethics committee. I have found that to be useful. It tends to diffuse issues and also depersonalizes them if there is some personal animus between us and the family.

Caplan: Do you use them?

Cohn: I have and still do, in different capacities. I've had the experience of training in an institution where there was a clinical ethics committee. Ethicists could come to the bedside and do an actual consult the way a subspecialist would. Currently, we have both a clinical ethics aspect but also a more philosophical or committee-based ethics committee. Where I am now, we also have a clinical service, including a committee-based ethics service. Both of them can be beneficial.

Caplan: The question I want to push to you is, when there is maybe a battle, do you follow up? Can we be sure that even if something is done which the parents might not be comfortable with, can we make sure that we don't draw some kind of division in the family, or between the mom and the dad, or the family and the kid? We may win that battle but could lose a war. Moshe?

Cohn: Yes, I had a very similar situation when I was training. It was very complicated and involved multiple committees. A young child ended up having necrotizing fasciitis and had to have multiple amputations. The mother refused the surgeries. We ended up going to court to get the surgery done. One of the challenges for us ethically was that the child remained on a ventilator awaiting the surgery, with a ventilator he didn't necessarily need until such time as he could have the surgery. There were multiple aspects to it. He had the surgery and, ultimately, the mother did disengage from the child because culturally the child was then seen as less than human, despite the fact that, subsequently, the child had state-of-the-art prosthetics and was doing fabulously well. But that disengagement happened.

Caplan: Ever had a follow-up problem like that, Dr Johnson?

Johnson: Not exactly like that. It's a risk. It's a risk we have to take in working in the best interests of the child. I guess the most analogous thing we had is a very tight-knit family with a mother, a grandmother, and a child who had new-onset diabetes. Diabetes is a pretty standard, ordinary thing; but for several members of that family, having to take insulin every day was a disability that made them not exactly shun that child but swerve. Of course, we had to do what was best for the child. It was one of those unfortunate things that can happen, but something like that can happen anyway.

The most difficult ones are where the risk-benefit ratio is not so clear-cut and the parents are reluctant, such as a situation in my career that has evolved about how we manage hypoplastic left heart syndrome. I saw a poll some years ago among cardiologists, and something like half of them would not have recommended that their own child go through the procedure.

Caplan: That's the one with the big surgeries and the Norwood procedures?

Johnson: Yes; some would say that the Norwood is the heart transplant.

Those are the more difficult ones, or ECMO [extracorporeal membrane oxygenation], for example—the statistics aren't very good, but the physicians recommend it and the parents are more reluctant. Those are always the tough ones.

I have only really had one occasion where we reached a total impasse. I think part of this debate, unfortunately, about children who are disabled, kids on chronic ventilation , is that we have a compulsion to reach decisions sooner. I think that if there's an element of suffering in the child, then that does compel us; but if they're not suffering we have time.

My feeling about the parental role in this is that—maybe it's because I'm a Quaker, but—most people are going to be reasonable. We need to give them some time. I often tell families, I want them to be happy, or at least content, with the decisions we make now and in 5 years. You have to have that element in all of these discussions.

Caplan: If you were trying to suggest ways to avoid battles, avoid these clashes, are they any words of wisdom that you would want to impart?

Cohn: I would agree with Dr Johnson that time is certainly your friend—most of the time. That allowing those discussions to happen, communication, letting parents adjust, is certainly important.

When we do make these decisions or have these conversations, each party, whether it's physician, family, ethics committee—whatever it is—has to have the information appropriate for them at their level that will enable them to participate.

Caplan: It's been a real pleasure to have both of you here.

I hope that you took away from this discussion some of the wisdom that our experienced practitioners have had grappling with these ethical and moral dilemmas. Thank you for watching Both Sides Now.

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