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Parents who wish no further treatment for their child
  1. Mirjam A de Vos1,
  2. Antje A Seeber2,
  3. Sjef K M Gevers3,
  4. Albert P Bos4,
  5. Ferry Gevers5,
  6. Dick L Willems1
  1. 1Section of Medical Ethics, Division of Public Health and Epidemiology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
  2. 2Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
  3. 3Department of Health Law, Division of Public Health & Epidemiology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
  4. 4Department of Paediatric Intensive Care, Emma Children's Hospital/Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
  5. 5Egmond, The Netherlands
  1. Correspondence to Mirjam A de Vos, Section of Medical Ethics, Division of Public Health & Epidemiology, Academic Medical Centre, Meibergdreef 9, Amsterdam 1100 DD, The Netherlands; m.a.devos{at}amc.nl

Abstract

Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents.

Objective To discuss who can best protect a child's interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership.

Methods We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians.

Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team.

  • End of Life Care
  • Minors/Parental Consent
  • Right to Refuse Treatment
  • Allowing Minors to Die
  • Family

https://doi.org/10.1136/medethics-2013-101395

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    In children with severe acquired brain damage the decision if and when treatment may be foregone is never simple. Because scientific research is scarce in this patient group, knowledge about the correlation between type and degree of damage, on the one hand, and duration and level of recovery, on the other, is still lacking. Accordingly, physicians’ opinions about the period of time during which substantial neurological recovery may occur and treatment should be continued can be quite diverse. Physicians’ views also vary on what may be considered a substantial level of recovery and an acceptable quality of life.1

    An uncertain prognosis complicates end-of-life decision-making for medical teams and also for parents.2–5 It confronts physicians with the question as to what extent parents should be involved in the decision-making process. Guidelines published by national paediatric societies give contradictory advice about how to best involve parents. Some recommend that all decision-making authority should be referred to parents as the child's main representatives, thereby favouring an informed approach, others recommend that physicians should retain the final authority, thereby favouring a paternalistic approach.6–12 A recent guideline, published by the Dutch Paediatric Society, recommends a semi-shared approach in which parents should be actively involved in the decision-making process while the physician in charge is responsible for making the final decision.13

    Ultimately, the discussion how best to involve parents comes down to one central dilemma: how can physicians best fulfil the ‘double ethical duty’ of sharing end-of-life decisions with parents while protecting them from too much responsibility and later regrets. This balancing act becomes even more delicate when physicians and parents disagree. And while most literature centres on the situation in which parents demand (allegedly) futile care for their child,14–17 the opposite situation, though by no means uncommon, is much less discussed.

    In this paper we first describe the decision-making process for a 3-year-old boy with severe acquired brain damage where the parents wanted to stop further treatment contrary to the views of the medical team. Next, we compare this case with recent literature. Finally, we formulate answers to the following questions: (1) what are the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians; (2) how should the double ethical duty of physicians, as previously described, be fulfilled in such cases and (3) what can be learnt from our analysis for the guidance of parents in end-of-life decision-making?

    We collected data through chart review, through audio recordings of team discussions and of meetings between parents and the medical team, and through in-depth interviews with parents and primary care professionals within 6 months after the patient's death. The institutional review board of the Academic Medical Centre of Amsterdam reviewed our study and gave their approval. After having read the first draft of this paper, the parents and primary care professionals gave their consent for publication. It was the parents’ explicit wish to use their son's true name.

    Case report

    Shortly after his third birthday Bruce became seriously ill with symptoms of high fever and vomiting. Two days later he had his first epileptic seizure, from which he did not regain full consciousness. He was acutely admitted to the local hospital. On suspicion of herpes simplex encephalitis (HSE), the medical staff started treatment with intravenous aciclovir. Because of his multiple drug-resistant seizures Bruce had to be transferred to the paediatric intensive care unit (PICU) of the affiliated university medical centre the next day. Here treatment with aciclovir and antiepileptic drugs was continued. MRI showed extensive areas of abnormal intensity in the right and left temporofrontal lobe, consistent with HSE. After 14 days of treatment Bruce could still not speak clearly and had diminished strength in his left limbs. However, he was seizure-free and fully alert again. In discussion with Bruce's parents the team decided to transfer him back to the local hospital. A few days later his parents were allowed to take him home. Over the week his condition improved further. Yet at the beginning of the following week there was a sudden deterioration. Father: “Back home, he started talking again, he rode his bike, he played and he walked. Then, one day, we could tell by the look in his eyes that things were wrong and we knew we were heading for trouble again.” Mother: “Yes, you knew what was happening.” (Quote from retrospective interview with parents)

    That same day Bruce was admitted to the local hospital again. There his neurological functioning rapidly deteriorated: he lost his ability to talk and walk and had swallowing difficulties. Again, he had seizures and involuntary limb movements. Most of the time, he was unable to recognise his surroundings. Extended diagnostic investigation did not show the cause of this second deterioration. Bruce's condition became unmanageable when he began to show signs of uncontrolled behaviour like spitting and biting his parents. He was referred back to the PICU for further treatment. Father: “In the local hospital Bruce had to be physically restrained or else we had to be there 24 hours a day to take care of him. You don't even chain your dog that way! So at that point we said: “If the neurologist does not expect any further improvement, we don't want him to have heart massage or ventilation anymore. Nothing at all.” We signed a contract in which this was stated. But after his transfer to the academic hospital this contract had to be annulled. There they wanted to intubate him again and try something new. It was our last and only hope, so we felt we had to grasp it.” (Quote from retrospective interview)

    As soon as Bruce was back in the academic hospital, the frequency of seizures rapidly increased as did his involuntary movements. There were more and more indications that Bruce had autoimmune-mediated encephalitis, triggered by the herpes virus. This kind of autoimmune reaction is rare, especially in children, and evidence-based treatment guidelines are therefore not available. After an extensive team discussion and consultation with experts abroad, it was decided to start treatment with an immunosuppressant agent (azathioprine) and plasmapheresis under ventilation and sedation. Physician: “We discussed our options. And we decided to start plasmapheresis in combination with several other drugs. This approach was based on theoretical arguments and a case report of a patient whose neurological condition had improved substantially with this therapy. I don't think these were strong arguments, but we all felt the need to do something in light of what was happening.” (Quote from retrospective interview with one of the physicians involved)

    Bruce's parents hesitantly went along with this treatment plan. Their worst fear was that it would prolong their son's suffering after all that he already had had to endure. Moreover, they were worried that their son would not recover to an acceptable degree. Mother: “How much damage do you see in his brains? Which damage is permanent? How will he be?” Physician: “That is a very difficult question and I don't have the answer yet. The MRI shows damage, but we can't tell whether this damage is permanent and what will be the consequences. But we think that we should try to fight this infection and his reaction with all possible means. Unfortunately we cannot say if and how he will recover.” Father: “I understand that, but do you feel that it has any purpose at all? What's been happening over the past two weeks is a mystery to us. Is it not too late?” (Quote from meeting between parents and one of the physicians involved)

    After having consulted more experts, the medical team decided to apply the proposed treatment for 2 weeks and then evaluate its effects and discuss further steps. This time schedule was explained to the parents in the course of several meetings. Yet none of the physicians could state explicitly what would be evaluated and what further steps would possibly be taken. Mother: “Each time we had a different physician and they all explained the situation somewhat differently. It was already complicated, but this made it even more incomprehensible. At a certain moment we bought an audio-recorder so that we could listen again to what had been said.” (Quote from retrospective interview)

    After 2 weeks, there seemed to be no positive effects, although Bruce's condition was hard to evaluate. Reducing his sedation immediately intensified his epileptic seizures, unrest and discomfort. In a team discussion, several members raised their doubts about whether treatment burdens by now might outweigh the uncertain benefits. Other members underlined that it was still too soon to forego treatment. In their opinion more time was needed to await a possible recovery. Physician 1: “With regard to his future we are still only talking about his basic functions, like swallowing and keeping his airway open. And we also don't know if we can stop his epileptic seizures.” Nurse: “And what about the consequences of all the medication that he gets.” Physician 2: “We need to consider his quality of life as well.” Physician 1: “I agree. But we should make decisions at the right moment. We really should take sufficient time. We owe it to this little boy.” (Quote from team discussion)

    In this intensive discussion the staff members eventually agreed to prolong the installed treatment for at least another week. Bruce's parents felt overwhelmed by this sudden prolongation. Mother: “We had understood that he would be extubated today. We don't see any improvement now and we didn't last Tuesday. So we thought: today it will all be over. But now we hear that his treatment will be continued. [ ] It becomes harder and harder to retain a little hope. It is like a roller coaster.” Physician: “All these emotions are very tiresome. But try to remember that we will look at Bruce every day to check his responses. He may become more restless again. I know: it is hard to see any positive signs right now. [ ] And even if his situation improves, it will be a road with many obstacles.” Mother: “This powerlessness doesn't make it any easier.” (Quote from a follow-up meeting between parents and a different physician)

    The parents’ exhaustion intensified their feelings of confusion, anger and grief. They shared these feelings with different members of the nursing staff. Some members had the impression that the parents’ despair was caused by the prospect of having to take care of a son who would not recognise them anymore, who would be unable to make any contact and who could not be fed because of extreme unrest and epileptic seizures. To others it seemed as if the parents were already in mourning and had given up hope that their son would survive. Physician: “Perhaps the time is coming near to discuss whether we still consider this treatment appropriate. But not at this moment, while we are still fighting for his life.” Nurse: “We need to involve the parents in this fight. Yet, it almost seems as if they have already given up. They have repeatedly asked me whether it is justified what we are doing. They are far ahead of us. Physician: “I don't think ‘ahead of us’ is the right way to say it.” Nurse: “Perhaps not, but the parents are in the process …” Physician: “… of saying goodbye. Still, I think it is our duty to treat this situation with the utmost care. You can only make this decision once.” (Quote from a successive team discussion)

    A second brain scan (MRI) after 3 weeks of treatment showed extended irreparable loss of brain tissue in the temporofrontal lobes. In a multidisciplinary meeting with all specialists involved it was decided to gradually decrease the sedatives and subsequently extubate Bruce. It was also decided not to reintubate him again if he was unable to breathe without support. The parents fully agreed with this plan and again emphasised their wish that everything should be done to spare their son further suffering. Early that same afternoon Bruce was extubated. Shortly thereafter his epileptic seizures increased and he began to show signs of serious discomfort. At the parents’ urgent request the dose of morphine was increased and propofol was started. Mother: “Bruce clearly became troubled.” Father: “I urged repeatedly to give him more morphine. But they answered that he was already getting so much.” Mother: “We had a new team of doctors who did not yet know Bruce. It seemed as if they wished to give him a last chance. Yet it was long over.” (Quote from retrospective interview)

    Eventually Bruce became respiratory insufficient. Late that evening he died on his mother's lap. That same night the parents took his body home.

    Discussion

    According to Dutch law, parental permission is required before starting (any) new treatment in patients aged between 0 and 12 years of age, except in acute, life-threatening situations. Physicians are considered to be responsible for the decision that treatment has become futile and should therefore be stopped or not started anew. For this decision no parental permission is required. Yet it is recommended that parents are asked if they agree with this decision.18

    Recent studies have shown that end-of-life decisions regularly give rise to conflicts between medical staff and parents.14 ,17 In most cases, parents want treatment to be continued, whereas physicians consider this futile. The bottom line in such cases is that physicians are not obliged to perform any treatment they consider inappropriate according to professional standards. The reverse situations where parents demand discontinuation of treatment while physicians think it too early are rarer. Such cases are also less often discussed in the ethical literature.19 Yet the question whether physicians have the right to continue treatment against the express wishes of parents is important and has direct clinical relevance. It also provokes the ensuing question whether it is psychologically and morally acceptable to place the burden of the decision to discontinue treatment on the parents. Below we describe the main arguments to protect parents from difficult treatment decisions, on the one hand, and to allow them to play a substantial, even decisive role in this process on the other. Additionally, we apply these arguments to our case.

    Is parental involvement in the interest of the child?

    It has often been argued that parents should not have a substantial say in end-of-life decision-making because, as laymen, they lack sufficient medical knowledge to contribute equally to this difficult process. This might especially be true in complex cases with an uncertain neurological prognosis as in the case of Bruce.20–23 Furthermore, it is argued that parents in addition to lacking medical expertise, also lack power because of their subordinate position. Physicians will thus always succeed in getting parental permission, even if this demands ‘subtle negotiations or simply presenting only one alternative’.22 In addition, in children with acquired brain damage the acute character of the illness will initially overwhelm parents and hinder their ability to understand the complex information.24 ,25 This combination of reasons, it is argued, makes parents less able than professionals to define and guard the child's best interests.

    In the retrospective interviews about our case, professionals mentioned another reason why active involvement of parents in the decision-making process would not be in the interest of the child. Respondents stated that the decision to withhold or withdraw treatment has to be a rational decision, based on facts. Yet in their opinion the parents’ preferences were largely influenced by their emotions of grief, despair and exhaustion, which did not add to, but merely hindered, objective decision-making. This line of reasoning can be criticised. Bruce's parents were able to substantiate their opinion with realistic observations of the facts—namely, Bruce's lack of interaction, the continuing seizures and his discomfort as soon as sedation was reduced. These observations were very much in line with those witnessed by the medical staff.

    Furthermore, would medical teams be able to make a purely objective and rational decision on continuation or discontinuation of treatment if parents were not involved? In recent years several studies have compared end-of-life decision-making by physicians from different centres and countries. These studies show how end-of-life decision-making is always influenced by the physicians’ personal values. These values are coloured by religion, culture, previous experiences and emotions.11 ,22 ,26–29 Objective, ‘value-free’ decision-making is thus an illusion.

    In conclusion, we cannot be sure that the involvement of parents is in the best interest of the child, but the same applies to healthcare providers. Physicians, together with parents and other professionals involved, can only try to define the child's best interests to the best of their ability at each stage of the child's treatment and guard and redefine these interests whenever necessary.30

    Is parental involvement in the interest of the parents?

    The psychological state of parents may be considered as an argument against active parental involvement from yet another perspective. Asking parents for their permission to withhold or withdraw treatment may cause them to feel responsible for their child's death. This may give rise to feelings of guilt afterwards.2 ,31 But guilt may also arise when parents feel that they have become responsible for a life that has become extremely burdensome for their child and lacks any comfort, interaction or pleasure, as could have been the case for Bruce.

    Several studies have retrospectively explored how parents themselves evaluate their role in end-of-life decision-making. In the majority of these studies, both parents of younger and older children evaluated active involvement as helping. Most of the parents who had not been actively involved stated that they would have preferred a greater share in the decision-making process in order to better protect their child's well-being.23 ,32–34 In retrospect, Bruce's parents still regretted not having been given the opportunity to share in making the central decisions. They felt that it would have enabled them to better protect their son from the suffering he had to endure, especially his severe discomfort.

    In previous studies parents underlined the importance of receiving honest and consistent information, also about remaining uncertainties. Furthermore, they felt it was helpful when this information was accompanied by their physician's personal arguments for and against possible course(s) of action.5 ,1,5 ,35–37 In summary, the available evidence does not seem to point to an overburdening of parents when allowing them to share in the decision-making process.

    Even if there were evidence to suggest serious feelings of guilt in parents, this does not, from an ethical point of view, imply that physicians should protect parents by assuming all responsibility themselves. The death of a child is a terrible tragedy and parental feelings of guilt may be an unavoidable part of that tragedy. We have to conclude that diminishing the involvement of parents, with a view to protecting them, is hardly defensible.

    Conflicting interests

    Authors like Beauchamp and Childress have stipulated what ‘good parents’, when trying to decide in the best interest of their child, should do—namely, ‘weigh the benefits and burdens of a possible course of action, considering such factors as relief of suffering, preservation or restoration of function, and quality and extent of the life sustained’.38 Like parents, healthcare professionals have a moral duty to act in their patients’ best interests and on the basis of their patients’ preferences, even if these conflict with their personal views.

    As a result, parents and professionals are obliged to monitor each other's decisions to ensure that these are in the interest of the child. This monitoring process may have two obvious contrasting consequences. On the one hand, if physicians make decisions which disregard the child's well-being in the short and long term, parents will want to disqualify those decisions. The repeated requests of Bruce's parents not to prolong his treatment, based on their observations of his suffering and the continuing deterioration in his quality of life, can be seen as such an attempt. On the other hand, parents may be disqualified as proxy decision-maker if they make a choice which clearly threatens their child's best interest.7 ,9 ,10 ,39–41 In a recent publication Diekema goes one step further and argues that parental decision-making authority may only be limited if parents place their child at significant risk of serious preventable harm. This may occur if parents request futile treatment which would prolong their child's suffering or if they refuse treatment which would clearly benefit their child.41 We do not think that in our case – characterised by prognostic uncertainty, a lack of evidence-based treatment options and by divergent opinions within the medical team – the parents could or should have been limited in their role of proxy decision maker. Their wish to discontinue life-sustaining treatment was meant to prevent further harm to their son and in light of all uncertainties it cannot be defended that this wish increased the risk of preventable harm. This implies that the parents' views and preferences should not have been over-ruled, as happened in this case.

    It remains a point of discussion whether the interests of the child can and should be separated from the interests of his or her parents. This issue is reflected in expert opinions which underline that parents, not physicians, will have to live with the consequences of the decision to continue or discontinue treatment.42 ,43 If treatment is continued, parents will have to care for a child who might have very severe impairments. If treatment is discontinued and the child dies, they will carry that loss for the rest of their lives. These experts therefore are of the opinion that parents should be the ‘final arbiters’ in end-of-life decision-making.42 ,43

    In our case some team members felt that the most important reason why Bruce's parents wanted life-sustaining treatment to be stopped was to protect themselves from the further sorrow of seeing their child deeply damaged. In the retrospective interview the parents indicated they had been concerned about their ability to protect their son 24 h a day from hurting himself because of his uncontrolled behaviour. It would have meant that he had to continue living a life of constant suffering, a suffering against which they had wanted to protect him all along.

    A study by Sharman et al shows that most parents are well aware of the internal struggle between their need to avoid their own agony and suffering and their wish to do what is best for their child. An open and sensitive discussion of this struggle will be helpful, to support parents, and also to encourage a more transparent decision-making process.37

    Conclusion

    In this paper we have tried to answer three questions concerning the case of a child whose parents wanted discontinuation of his treatment against the views of the medical team: (1) What are the pros and cons of sharing end-of-life decisions with parents and do the pros outweigh the cons? (2) How can the double ethical duty of involving parents and protecting them at the same time be fulfilled in practice? (3) What can be learnt from our analysis of this case for the guidance of parents in end-of-life decision-making?

    Do the pros outweigh the cons?

    Upon reviewing our discussion of the pros and cons, we conclude that the arguments in favour of involving parents in end-of-life decision-making outweigh the arguments against. Making decisions in the best interest of their child will always be hard for parents because of the emotional state they are in. Nevertheless, most parents can cope with an active role and find it helpful. There is growing evidence that it was not the parents who actively participated but the parents who felt excluded and therefore unable to sufficiently protect their child who were prone to later feelings of doubt and guilt. This is clearly illustrated by our case. For most parents active involvement means that their opinion is integrated into the decision-making process and their agreement is sought. For some parents it also implies making the final decision, either alone or together with their physicians.22 ,23 ,32 ,33 ,44–46

    In cases characterised by significant uncertainties about effective treatment options and prognosis—and therefore without clear criteria by which physicians can justify one specific course of action47—we argue that parents should have the opportunity to make decisions in close cooperation with their child's physician. Some parents will prefer treatment to be continued in order to have (more) certainty that every chance has been taken. Others will prefer treatment to be discontinued at an earlier stage than members of the medical team to spare their child the undue burden of treatment which in their opinion has become inappropriate.

    How can the double ethical duty of sharing and protecting be fulfilled?

    We have stated that by giving parents the opportunity to share in the decision-making process they may be protected from later doubts and regrets. However, there will always be parents who wish to be protected from having to share in the decision-making process. Physicians should of course respect this wish. At the same time parents’ preferences about their role may change over time. Well-considered involvement of parents therefore also implies that physicians regularly check whether parents feel their points of view are respected and that they are involved to the right extent.5 ,32 ,35 ,36 ,46

    In this paper we have explored yet another double ethical duty which physicians face: the duty to share decisions with parents versus the duty to protect their patient's best interests. Parents may and should be over-ruled when they refuse treatment that is clearly beneficial for their child. Parents may and should also be over-ruled when they request strictly futile treatment that will prolong their child's suffering. Both situations occur rarely.

    Most conflicts between parents and physicians arise when there is no unequivocal best course of action—situations as in the case of Bruce, characterised by prognostic uncertainties and, often, substantial variation in physicians’ attitudes towards treatment continuation or discontinuation.48 In this ‘grey zone’ of decision-making we think there is no ethical justification for over-ruling parents’ preferences. Instead we conclude that the physician's duty to protect the child's best interest implies his or her duty to actively share this process with parents and—if parents wish so—to let them make the final decision.49

    What can be learnt from our analysis for the guidance of parents?

    1. Let parents participate in the process of end-of-life decision-making by honestly discussing the remaining treatment options, including their pros and cons, and inviting them to express their views and preferences.

    2. Check regularly whether parents feel involved to the right extent.

    3. Give parents the opportunity to decide whether treatment should or should not be stopped in cases characterised by prognostic uncertainties and/or divergent opinions within the medical team.

    4. Ensure a consistent process and do not suddenly reverse a decision or change the agreed time path. Assign one doctor who supports parents through the entire process.

    5. Trust parents in being the true proxies of their child. Parents may only be disqualified as proxy decision-makers if they indisputably threaten their child's best interests.

    Acknowledgments

    We are grateful for the important contribution of Mr and Mrs Gevers, the patient's parents, to this paper. Upon being invited to be coauthors they preferred that Mr Gevers’ name was added on behalf of both of them. Moreover, we thank all professionals who were involved in the patient's care for their contribution to our study.

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    Footnotes

    • Contributors All authors (1) contributed substantially to the conception and design, acquisition of data and analysis and interpretation of data; (2) drafted and revised the paper critically for important intellectual content; and (3) finally, approved the version to be published.

    • Funding This study is part of a research project entitled ‘Tailor-made decision-making within Dutch paediatrics. How parents can be better involved in end-of-life decisions for their children’. This project is funded by the Netherlands Organisation for Health Research and Development (ZonMw). ZonMw did not in any way influence the data acquisition, data analysis or drafting of this manuscript.

    • Competing interests None.

    • Patient consent Obtained.

    • Ethics approval Insitutional review board of the Academic Medical Center of Amsterdam.

    • Provenance and peer review Not commissioned; externally peer reviewed.

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