PEDIATRICS Vol. 118 No. 1 July 2006, pp. 393-397 (doi:10.1542/peds.2005-2655)
COMMENTARY |
Answering the Question: "Doctor, if This Were Your Child, What Would You Do?"
Department of Pediatrics and Program in Bioethics, University of California at Davis, Sacramento, California
Tommy* was only 2 years old when he was admitted to our ICU. He was a bright toddler, full of joy and laughter. His parents loved him dearly, and they cared for him with great affection. Tommy's family did not have a pool, but they did have a small fishpond in the backyard. No one ever thought about putting a fence around the fishpond; how dangerous could such a small pond be? Well, it seems it was quite dangerous, and one morning Tommy's mother found him face down in it. She called 911, and Tommy's heart began beating after prolonged cardiopulmonary resuscitation. He was admitted to our ICU unconscious and unresponsive. Two days went by, and Tommy showed no sign of neurologic recovery. Although his other organ systems improved, he had no purposeful movements. I had been meeting with the parents every day in anticipation of our discussion that day. I explained to Tommy's parents that without some recovery by 48 hours, there was no hope of meaningful recovery after such an event. I explained that we had 2 options: discontinue support, and he would likely die relatively quickly, or continue the ventilator, and his brainstem would regain enough function that he would continue to breathe but would surely remain in a vegetative or minimally conscious state for the rest of his life. Then it came—the question: "Doctor, if he were your child, what would you do?"
In 1999, Truog1 wrote a thought-provoking essay in which he distinguished differences between giving advice based on medical facts and giving value-laden advice. Truog also drew our attention to the "gray zone" between these extremes. He argued that although it is appropriate for physicians to give strictly medical advice, it may be less advisable to give advice that is based on personal values. Truog eloquently explained that a physician's personal preferences do not necessarily represent the values, believes, and preferences of parents, and therefore physicians must use great care when doling out such counsel. Truog argued for a facultative, rather than directive, approach. Because of the differences in physician and parent values, Ruddick2 and Gutgesell3 make similar arguments and also caution physicians about carelessly divulging their own values. Unfortunately, however, these authors did not clearly advise physicians how to respond when asked this most difficult question, leaving many to believe that we should simply not answer when it is asked. In a recent issue of the Journal of Clinical Ethics, Truog clarified some aspects of his previous statement and gave more guidance to pediatricians who care for sick children and are asked "the question."4
Several other notable authors also weighed in on this discussion because of the general sense that simply not answering parents is inappropriate. Ross5 made several important points. First, she argues that when parents ask "the question" they may be assessing physician bias. This may be extremely important for parents because, at times, physician recommendations to parents may be significantly different from the choices they themselves would make, and at times physicians do not even present to parents the options that they might choose for their own child.6 In addition, Ross argues that "the question" compels the physician to put the choice in a broader context of the effects on the entire family, which can be most helpful. Ruddick7 also agrees that physicians should answer "the question"; however, he argues that physicians should answer "the question" as a physician-parent rather than attempting to put themselves in the parents' position, because any choice they would make is necessarily influenced by their position as a pediatrician. Halpern8 argues that "the question" is most ethically relevant when a child is seriously ill, and when answering, physicians must consider primarily the best interest of the child rather than the interests of the family as a whole. She argues that empathy is extremely important in these situations. Finally, Quist9 remarks that "the question" generates an opportunity for intimacy between parents and physicians that may strengthen and deepen the bond and trust between them.
Unfortunately, however, I believe that none of these experts fully analyzed this problem, and therefore their responses do not completely match the clinical situation. In my work as a pediatric intensivist, I am faced with "the question" several times each week. I have long struggled with how best to respond to "the question" and have gained some insight through talking more extensively with parents who ask it.
I have found that, in general, "the question" is asked in 3 different situations. In the first situation, parents are given a great deal of technical information with mortality statistics and likelihoods of various outcomes, both good and bad. The myriad facts and figures can be overwhelming even to the most sophisticated parents when they are worried about their critically ill child, are likely more tense than they ever have been, probably have not had sufficient sleep or food in a long time, and may well be removed from their home and their normal support network. Often, the treatments that hold out the greatest hope for recovery also pose the greatest risk to a critically ill child. Sometimes, when parents are unable to fully comprehend the ramifications of the decision at hand, they ask the doctor what he or she would do. What they are saying is that they are too overwhelmed with stress and information to make a reasonable choice. They view the doctor as an expert who fully understands these choices, and what they really want to know is "what will give my child the best chance of getting better?"
In the second situation, parents are making very difficult choices and they merely need support. Particularly when parents must make life-and-death decisions about do-not-resuscitate status, escalation of care, or withdrawal of support for their treasured child, they look to others to validate the choices they make. What they are really asking is, "Doc, am I making the right choice?"
The third type of situation is perhaps the most difficult. Parents are faced with very difficult alternatives, often revolving around life-and-death choices. Should we continue life support for a child who has suffered a near-drowning event? Should the parents of a child who suffered a vertebral fracture at C-2 during a motor vehicle accident withdraw support from their toddler or pursue aggressive care so that she can live with a tracheotomy, ventilator dependency, and complete quadriplegia? In such cases, parents are overwhelmed and have a difficult time making such choices. What they may be asking is, "I cannot choose whether my child should live or die; would you please choose for me?"
"The question" in each of these 3 situations requires a different response, but each certainly deserves an answer. The first task for the clinician is to better understand what is being asked. Because each question must be answered differently, responding appropriately requires one to have a clear understanding of what the parents need and want from their child's doctor.
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RESPONDING TO THE FIRST QUESTION |
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When parents ask "the question" and mean, "What will give my child the best chance of getting better?" it is appropriate for physicians to answer clearly with their best judgment. Physicians have specialized knowledge that allows them to weigh the options with more complete understanding and insight than parents. For example, Julia was a 13-year-old girl in our ICU who was admitted after an intracranial arteriovenous malformation bleed. The neurosurgeon was recommending an operation, whereas the interventional radiologist recommended an embolization procedure. The parents asked the ICU attending "the question" because they were receiving conflicting information and felt unable to make an informed, reasoned choice. They felt that this doctor would be better able to judge which intervention would give Julia the best chance of a full recovery. In such circumstances, parents frequently ask "the question." It is appropriate to honestly answer the parents' question, because this is a medical judgment, and the physician is better able to interpret the medical literature and may have significant personal experience with caring for children in this condition.
Whenever a physician says "I would do ___," however, it is important for the physician to acknowledge that their own assessment of risks and benefits might be different from that of the parent. Pediatricians should explain not only what they believe is the best option, but why it is the best option. As such, if parents have different values (eg, more or less risk aversion than the physician), they can make an informed decision. Physicians, however, must stress that parents have the right and obligation to act as the child's advocate and surrogate decision-maker, and as such the physician will support any choice they make (with the exception of decisions motivated by neglect or abuse), even if it is not what the physician would personally choose.
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RESPONDING TO THE SECOND QUESTION |
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When parents ask "the question" and mean, "Am I making the right choice?" it is appropriate for physicians to answer clearly with their best judgment. As Truog4 states, when it is the case that a physician believes that he or she would make the same choice that the parents have made, sharing such information can be very helpful. This is not to say that physicians should be dishonest. If the physician would not make such a choice, he or she should not lie. Even in such cases, however, the physician can lend a great deal of support. Compassionate statements include: "Other parents in your situation have made the same choice that you are making now," and "It is normal to feel uncertain when making such a decision, but you are doing a great job of weighing the pros and cons, and I think you have come to a good decision for your child that you can feel comfortable with." When parents ask "the question" as a way to gain validation for their difficult choices, such statements are usually well received and help the parents feel more confident in their decision.
In general, such supportive statements resonate with parents, and they are comforted; however, this is not always the case. What then should one say if after giving the above answer parents say, "Thank you for those supportive comments, they do make us feel more comfortable with our decision, but we still want to know; what do you think you would do if you were us?" As Truog states, if the physician believes he or she would likely make the same choice, saying this can be quite helpful to families. If, however, the physician believes that his or her personal morality would lead to a substantially different choice, and the parents truly want to know this information, it would seem that giving this information can also be appropriate. As Quist9 argues, the relationship between parents and their child's physician is highly intimate and is build on mutual trust. Physicians who feel comfortable doing so should explain that their own values and beliefs may be quite different from those of the family and that their own beliefs and morals are no more "right" than those of the parents. They should acknowledge the uncertainty of their own answer and discuss the limitations of their own experiences. In addition, they should explain why they believe that they would make such a choice so that parents can understand the motivation behind the decision. In the end, however, if parents are asking for honesty, physicians should be honest.
There are others who would disagree and have valid arguments to support their position. If parents cannot rely on the honesty of their child's physician, however, they lose trust in the health care team. Personally, I have seldom given this response and have known that it was not what the parents wanted to hear, but families have generally responded by saying something like "thank you for your honesty." It is imperative, however, that parents understand that the physician and the other members of the health care team will continue to support them and their child fully, even when parents make a choice that the health care providers might not make themselves.
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RESPONDING TO THE THIRD QUESTION |
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When parents ask "the question" and mean, "Would you please choose for me?" physicians must take great care. Clearly, the values and beliefs of the physician may be fundamentally different from those of the parents. Many factors play into life-and-death choices. Societal norms, upbringing, religion, education, personal beliefs, and one's own life experiences are all paramount in decision-making, and often the background of parents and that of their child's physician are radically divergent. Even in such cases, however, physicians must give honest answers and be as supportive of parents as possible.
What, then, should one provide as an honest answer without being coercive? Research has demonstrated that people's predictions of how they would act given a hypothetical situation is not well correlated with their actual responses to such circumstances.10 As such, if a physician has never been in the predicament of the parents, the physician's estimate of what he or she would likely do is unreliable. Furthermore, because the background, education, religion, and life experiences of the physician are almost certainly different from that of the parents, the physician could never truly be in the parents' position. Physicians must first acknowledge these issues and explain that for such reasons they cannot predict with certainty what final choice they would make if they were in the position of the parents.
What I have said to parents is that I cannot accurately predict what final decision I would make but that I have an idea about how I would attempt to make such an agonizing choice: "I would first sit down with my wife and talk. Then I might talk to a social worker or therapist to help my wife and me further understand our own fears and beliefs. I might ask a chaplain to help also. I would probably also talk to my family and friends to get their thoughts and support. In the end, I am not sure what choice I would make, but I think that after I went through such a process, I would have a better idea about what to do. That's the honest truth." I have said this to parents frequently, and I have always gotten a good response. I also try to say things such as "I can only imagine what this must be like for you" so that they understand that I recognize that I do not know what they are going through and how hard the situation is for them. Such statements also reinforce my inability to predict what I would do in their situation. If parents, after such a conversation, still want the physician to guess what choice he or she might ultimately make, physicians should be honest. This is not to say that physicians must discuss their own personal preferences; indeed, physicians have the right to their own privacy. However, if physicians feel comfortable sharing their own values with families, such intimacy is appropriate. Physicians must be careful, however, when disclosing personal values so that parents do not feel coerced. As noted above, without honesty between parents and their child's physician, there is little foundation for trust.
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SHARED DECISION-MAKING |
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It should be noted that many practitioners believe that parents have the authority and obligation to act as autonomous surrogate decision-makers for their children. Recently, however, some have argued that a shared decision-making model is more appropriate, particularly when decisions involve life-and-death choices. A recent international consensus statement on end-of-life care, which was the product of a conference sponsored by several international critical care societies, states that a shared decision-making model is most preferable.11,12 Under such a model, physicians and other care providers express their own views in a give-and-take discussion with parents so that a shared decision can be reached. The notion that physicians should not express their views because such views will overly influence parental decisions presupposes the legitimacy of completely autonomous parental decision-making, which is not universally accepted, even within the United States.
Indeed, when parents ask for the physician's personal preferences and the physician chooses not to answer because he or she does not wish to be coercive, this may be viewed as a form of paternalism. When forbidding physicians from answering "the question," are we saying that, despite the parents' belief that they would like to know what the doctor would do, we know better? Because we believe that such information could be coercive, we choose to shield parents from it. In observing clinicians share their own personal beliefs with parents, their opinions have not appeared to me to be coercive when the clinicians take care to reinforce the validity of parental beliefs and have discussed that their own beliefs are not more "right" than those of the parents. When I have felt comfortable disclosing my own value-laden preferences, many parents have made choices that were different from the choices I might have made, and parents have felt comfortable making those choices with the knowledge that my team and I would continue to support them and their child regardless of the decisions they make. Physicians should not assume that they know what is best for parents.
Under a shared decision-making model, health care providers must strike a delicate balance between giving control to parents and voicing their personal opinions as the authority figure. Often, ancillary staff (eg, social workers, chaplains) can be extremely helpful in such discussions. Although health care providers should consider such a model, it is imperative to remember that it is the parents, not the hospital staff, who will live with any decision on a day-to-day basis for the rest of their lives. As such, practitioners should strive to create an atmosphere that focuses on the interests of the child and will allow parents to feel at ease with current treatment decisions in the future.
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CONCLUSIONS |
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Whenever parents ask a physician, "What would you do?" they deserve an answer. Physicians must first clarify the meaning of "the question" in each circumstance and then strive to be supportive and give appropriate, relevant, and noncoercive information. Determining what information parents seek when they ask "the question" may be difficult, and, indeed, parents may be asking more than one of the questions discussed above at the same time. Health care professionals should take the time needed to determine what information parents desire before giving an answer. If parents need an expert judge of copious technical information, the physician should provide such assistance while explaining why they judge the options as they do and while explaining that parents may make different choices with the full support of the physician. When parents merely want confirmation that they are making sound decisions, physicians should be generous with their time and support, and if they believe that they would make a similar choice, there is no harm in sharing such information. Finally, if parents need guidance in decision-making, physicians, with their colleagues in social work, psychology, chaplaincy, and nursing, should give parents the opportunity to discuss their feelings and help them develop a method for making decisions that is most comfortable for the parents. Physicians must be cognizant of the many facets and nuances behind "the question" and should be cautious when answering. Pediatricians must strike a delicate balance; we should give parents honest information that they request but must not coerce parents or give the impression that our values are in any way "better" than their own. Physicians should facilitate rather than direct parental decision-making.
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ACKNOWLEDGMENTS |
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This work was funded by a grant from the Greenwall Foundation through the Faculty Scholars Program in Bioethics.
I am very grateful to Ben Rich, Bernard Lo, Robert Burt, and Jim Curran for their keen insights and assistance with this work.
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FOOTNOTES |
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Accepted Jan 5, 2006.
Address correspondence to Alexander A. Kon, MD, Pediatrics and Bioethics, University of California at Davis, 2516 Stockton Blvd, Sacramento, CA 95817. E-mail: aakon{at}ucdavis.edu
The author has indicated he has no financial relationships relevant to this article to disclose.
Opinions expressed in these commentaries are those of the author and not necessarily those of the American Academy of Pediatrics or its Committees.
* Names have been changed to maintain patient confidentiality. 
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REFERENCES |
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- Truog RD. "Doctor, if this were your child, what would you do?
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- Gutgesell HP. What if it were your child? Am J Cardiol. 2002;89 :856[CrossRef][Web of Science][Medline]
- Truog R. Revisiting "Doctor, if this were your child, what would you do? " J Clin Ethics. 2003;14 :63 –67[Web of Science][Medline]
- Ross LF. Why "doctor, if this were your child, what would you do?" deserves an answer. J Clin Ethics. 2003;14 :59 –62[Web of Science][Medline]
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[Abstract/Free Full Text] - Ruddick W. Answering parents' questions. J Clin Ethics. 2003;14 :68 –70[Web of Science][Medline]
- Halpern J. Responding to the need behind the question "Doctor, if this were your child, what would you do? " J Clin Ethics. 2003;14 :71 –78[Web of Science][Medline]
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[Abstract/Free Full Text] - Carlet J, Thijs LG, Antonelli M, et al. Challenges in end-of-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003. Intensive Care Med. 2004;30 :770 –784[CrossRef][Web of Science][Medline]
- Thompson BT, Cox PN, Antonelli M, et al. Challenges in end-of-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003—executive summary. Crit Care Med. 2004;32 :1781 –1784[CrossRef][Web of Science][Medline]
PEDIATRICS (ISSN 1098-4275). ©2006 by the American Academy of Pediatrics
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