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Ethics Rounds—Symbolic Resuscitation, Medical Futility, and Parental Rights

2010; American Academy of Pediatrics; Volume: 126; Issue: 4 Linguagem: Inglês

10.1542/peds.2010-1379

1098-4275

Joel Frader, Eric Kodish, John D. Lantos,

Grief, Bereavement, and Mental Health

What should doctors do when they are caring for a dying child with a complex, chronic condition and whose parents will not agree to palliative care? What if those parents are cognitively delayed and have lost legal custody of the child because of their inability to care for her? This month's Ethics Rounds concerns a child with septo-optic dysplasia and respiratory failure. She is cared for by her grandmother and is legally a ward of the state. The doctors think that a do-not-resuscitate order is appropriate. Her grandmother agrees and is even ready to withdraw ventilator support. Her parents disagree.We asked 2 experts in bioethics consultation and palliative care to comment on this case. Joel Frader is Chief of General Academic Pediatrics and Medical Co-Director of Pediatric Palliative Care at Children's Memorial Hospital in Chicago, Illinois. Eric Kodish is Chair of the Department of Bioethics at the Cleveland Clinic in Cleveland, Ohio.D. K. is a 2-year-old girl with septo-optic dysplasia, microcephaly, seizure disorder, and severe developmental delay who is intubated for respiratory syncytial virus with respiratory failure.Her past medical history is significant for microcephaly and severe developmental delay since birth. Her baseline functioning is minimal—she has no purposeful movement and no speech or comprehension of language. She is unable to swallow and is given nutrition through a gastrostomy tube.Both of her parents are developmentally delayed and were unable to care for her at home. The state placed her with the maternal grandmother. Although the mother and father no longer have custody, they have been in the PICU and at the bedside daily since the patient was admitted to the hospital.The patient was admitted in respiratory failure and intubated. On the second hospital day, she suffered an acute respiratory decompensation on the ventilator and required a high-frequency ventilator at a fraction of inspired oxygen of 100%. Her primary care pediatrician and the PICU team recommended a do-not-resuscitate (DNR) order. The grandmother agreed that a DNR order and withdrawal of ventilator support is appropriate. The state child protection agency agreed to a DNR order if the hospital ethics committee approves it. The patient's mother and father are adamantly opposed to a DNR order or withdrawal of ventilatory support. They are “hoping for a miracle.”The PICU's attending physician called for an ethics consult.Our ethics question is: Is a DNR, with the consent of the grandmother and the state but over the objections of the parents, appropriate for this patient?From a “medical perspective,” a DNR order for D. K. seems to make sense. The child has a critical acute illness and a severe, presumably static encephalopathy, and under the circumstances, cardiac arrest would likely stem from prolonged ischemic damage because of inadequate gas exchange. In that case, cardiac compressions and inotropes probably would not work. If they did, she would likely suffer further brain damage. Pediatric intensivists and the child's primary care physician could well consider a DNR order as part of a “big-picture” view of D. K.'s condition and invoke the child's “best interest” as justification for limiting (further) resuscitation. If the state, as the child's legally authorized decision-maker, and her primary caretaker both agree to a DNR order, then it would be legally permissible to write such an order.However, the matter needs closer scrutiny. First, no such thing as a universal medical perspective exists. If one queried many different pediatricians about this or similar cases, one would find a wide variety of responses. Some would rely on estimates of outcome for which no solid statistical data exist. Others would look at the child's likely limited life span. Still others would draw on their own moral views, whether about resource allocation or the value of each human life. These preferences would likely rely on a complex and typically unconscious mix of scientific information, religion, social philosophy, and so on. Why should the views of D. K.'s doctors, or her grandmother, whatever their basis, automatically trump the views of the biological parents? Does the fact that her parents no longer have legal authority over D. K. mean that they no longer deserve moral consideration, either?The state presumably obtained responsibility for D. K.'s care because the parents could not consistently provide what D. K. needed to continue to live. We are not told that their failure reflected indifference or lack of care for their daughter, only that they could not manage her care. The grandmother apparently accepted day-to-day responsibility for D. K. with the aim of continuing the girl's life. Now the parents strongly endorse that same objective—maintenance of D. K.'s life—albeit at a time the child's life is threatened. Is it clear that the state, or more specifically an overwhelmed case worker who holds the state's portfolio, and the grandmother have greater moral authority to consent to a DNR order than the parents?Before ignoring the parents' feelings and preferences, one should want a substantive clinical assessment of the parents' capabilities and the potential impact that not attempting resuscitation might have on them. Perhaps better communication techniques, using pictures or stories that would allow them to “connect” with their child's condition or the likely failure of resuscitation, would help. Simply disregarding D. K.'s developmentally disabled parents may fail to provide adequate respect for the parents' actual understanding and/or their emotional state. D. K.'s medical and psychosocial care team have more work to do.This case, and all ethics consultations, can be appreciated as narrative. Cases play out over time, and the judgments we make at the beginning may differ from those at which we arrive in the end. Still, ethics consultants must respond to the facts as we know them, hoping that our advice will stand the test of time regardless of the next turn of events. The experienced ethics consultant accumulates a personal casebook, maps each case onto the template created by the ones that came before to predict what might happen next in this case, and draws on that clinical story bank to craft ethical guidance.This case raises a number of questions. First, one must recognize that DNR status and withdrawal of ventilator support are not necessarily linked. The primary care pediatrician and PICU team do not go as far as D. K.'s grandmother in terms of treatment limitation. Does the health care team have consensus around what degree of limitation is in the patient's best interests? The state child protection agency seems to take a process-oriented approach, looking to the ethics committee to ensure thorough review before a decision on DNR is made. But, what would the authorities say if the committee recommended stopping the ventilator? D. K.'s maternal grandmother is in a complicated position. She does not have legal custody, but she has responsibility for D. K. I would want to know more about this family. How long has D. K. lived with her grandmother? Does the grandmother have any help caring for this challenging child? Is she just exhausted? I would also want to know about the paternal grandparents and maternal grandfather, if they are in the picture. Finally, the patient's parents may have no legal standing, but they have important moral significance in this story. It would be cruel and disrespectful to completely exclude them from the decision-making process and ignore their hope.An excellent ethics consultant might help the key stakeholders to use their moral imagination to make a substituted judgment decision from the perspective of D. K. herself, but that would be quite a stretch given her past medical history. The better alternative would be to make an objective assessment of burdens versus benefits of continued support, keeping focus on the objective rather than the subjective to the extent possible. Clarity about the distinction between DNR and stopping the ventilator is paramount: a 1-step-at-a-time approach necessitates these decisions to be uncoupled, and consideration of code status should precede any discussion of withdrawal. Finally, pediatric ethics requires that we prioritize the question “What is the right thing to do?” over the question of “Who gets to make the decision?” Focusing on the latter question would be the easy thing to do but the wrong way to look at this case.The ethics committee discussed several options. Some argued that the grandmother's wishes should prevail, because she has custody and wants to do what the doctors are recommending. Others thought that the parents should have the right to decide because they would bear the greatest emotional burden from their child's death. In the end, a consensus was reached that the ethics committee would recommend that the infant not receive cardiopulmonary resuscitation (CPR). Discussion then focused on how this should be communicated to the family. Some suggested a family meeting with the parents and grandmother present. Others suggested just telling the grandmother and leaving it up to her to communicate with the parents. One doctor suggested that the best solution would be a “slow code” in which doctors would attempt a brief, symbolic resuscitation. This, he argued, would allow the child to die but would not force the parents to acquiesce in a decision to withhold therapy from their child or to confront the grandmother about her complicity in the decision.Is such a slow code ethically permissible?The staff now wonders about “show” or “slow” codes to help the parents cope. In other words, the doctors and nurses would go through the motions of resuscitation without actually conforming to the standards of good medical practice (adequate compression, ensuring oxygenation, medications to support circulation, etc). Can one ethically justify such behavior, recognizing the motivation to help the parents? It's tempting, but it is not right.Such deception fails on a number of levels. As Sissela Bok argued some time ago, lying often goes awry. Humans cannot easily sustain the lie; somebody finds out, and the fact of the deception gets back to those one hoped to deceive. The revelation adds anger and mistrust to the disappointment that the original understanding was mistaken. Regaining that trust, if at all possible, takes tremendous time and effort. The more widely known the deception, the more individuals wonder and worry about whether they should trust their health care professionals. “Will my doctor keep her promise to keep my secrets from my lover/husband/children?” Although this lie seems acceptable, what about the next possible deception? Does that one involve a more serious violation of a prima facie duty to tell the truth?In D. K.'s case the professionals may feel tempted to excuse a show code because of the parents' mental handicaps, but that only compounds the ethical violation. Such reasoning fails to respect the importance of trust and fidelity we owe all persons and perpetuates generally poor treatment of those with disabilities. Finally, the show code seems to be an attempt to avoid having to do the hard work of “owning up” to an institutional decision to put the parents' wishes aside. Although the professionals, institutional officials, the primary care taker (grandmother), and the state may have acceptable reasons for enforcing a DNR order, the decision not to resuscitate does not let them all off the hook of having to communicate the decision clearly and compassionately to the parents. That discussion will be hard. We can all understand the wish to avoid it, but such conversations go with the territory of being a physician. We have to have them, so we should learn to conduct them well. We owe D. K.'s parents honesty and good psychosocial care regardless of what happens to their daughter.Two new questions are raised, and I will dispense with the first and easier one first. Despite the suggestion of a well-meaning doctor, the ethics committee cannot and must not give explicit approval for a slow code. The long-term implications of suggesting that slow-code status would be morally acceptable in this case are untenable. It would lead to an erosion of trust and a cascade of problematic consequences. Patients, families, and health care professionals all need to rely on the good-faith assumption that when CPR is attempted it will be done with vigor and genuine hope for success. If the ethics committee were to provide an imprimatur of ethical legitimacy to the concept of a slow code, that good faith would be shattered for future cases. Doubt would permeate the clinical atmosphere. If you are going to do something, do it right. Charades are not acceptable when it comes to life-and-death matters.The second question is more complex and challenging. Although I generally disagree with those who contend that clinical ethics consultation is really just communication mediation, there is an element of truth to the assertion. What is the best choreography of communication in this narrative? Good clinicians are sensitive to familial burden and seek to minimize the pain in what are always tragic situations. Insisting that the patient's grandmother be the messenger would add insult to injury. I would advocate for a family meeting with all present and frame the decision as agonizing but ultimately in the best interest of D. K. I would also be sure to elicit and attend to the spiritual care needs of the family at this final chapter in the life of their daughter.The ethics consultant recommended that the attending physician inform the grandmother of the decision to write a DNR order and withhold resuscitation. When the attending physician went to speak to the grandmother, the parents were there. In discussion, they all agreed that the infant should get some CPR. The grandmother said, “Okay, but only 3 chest compressions.” The parents agreed. The next day, the infant arrested, and a code was called. The infant got 3 chest compressions and then died.It it important to note that at the time of this discussion both the grandmother and the parents had an opportunity to participate in a discussion of what to do in case of cardiopulmonary arrest. Unfortunately, it seems that the grandmother and, by inference, the attending physician exploited the parents' limited understanding of CPR. An attempt to explain the meaning of an arrest and what might constitute a real resuscitation would have been appropriate. If the medical team and the ethics committee really believed that CPR would fail under any circumstance for this infant, the only harm in a 10-minute effort with adequate compressions and usual medications would have been the “waste” of time involved. The staff could have used that time to teach resuscitation to inexperienced nurses, residents, and others. Professionals need to learn to put their interests—and feelings—aside in many circumstances, and this case provides a good example of such an occasion. Assuming that the physicians take care to ensure the infant's comfort, either by having determined her inability to respond to pain or by providing analgesia, a legitimate resuscitation attempt would not harm the child and would preserve veracity for all concerned.The dénouement of this narrative is disturbing. The ethics consultant must not become the ethics police, but some follow-up debriefing and education might be helpful for the future. Three chest compressions do not a resuscitation make. Although a DNR order would have arguably been the most ethically sound outcome, a full-fledged effort at resuscitation would have been much preferable to the show-code approach that was taken. By acceding to the grandmother's request, the PICU team was practicing “a la carte” medicine, and in this admittedly difficult clinical situation, the team took the easy way out. I would convene a “what can we learn from this difficult case?” teaching session within a couple weeks of D. K.'s death and work with the PICU team to try to understand their approach and to enhance their understanding of why this outcome was problematic from the perspective of clinical ethics. We all need to keep learning from cases.Doctors' primary ethical obligations are to the child who is their patient. They must try to do what is in the child's interest and not cause harm or pain to the child. However, they have ethical obligations to the family as well. Often, those obligations conflict.For this dying child, a full code was too much, for medical and humanistic reasons. For this dying child's family, no code was too little, for emotional reasons. A limited and symbolic code (3 chest compressions) was just right. However, such symbolic codes do not fit well into the either-or dictates of our current ethical or regulatory environment.The grandmother got it. She understood that her granddaughter was dying. She realized that her daughter did not want to give up. She tried to find the best compromise between tragic reality and illusory hope. She recognized that CPR would be symbolic but also that symbols are important.Many arguments can be made against symbolic codes. They boil down to arguments against deception. Such concerns are valid if we tell the family that we are going to “do everything” and then do not. Such deception did not occur in this case.This case is not about deception. It is about the power to decide how to describe what was happening and what would be done. It was about the authority to determine what should count as truth-telling or deception. In a tragic case such as this one, that power and authority properly belongs to the family. They have the right to tell their own story. The grandmother exercised that power and authority wisely. We should learn from her.