When parents say “more” and health care professionals say “enough” Dawn Davies MD MA FRCPC1,2, Cheryl Mack MD MA FRCPC3
Maya is a three-year-old, previously healthy girl. She is her parents’ first child, and her conception occurred after two years of treatment for infertility. During an uneventful day, she suddenly experiences a generalized tonic-clonic seizure while napping. Shortly after this, she stops breathing. Her parents start cardiopulmonary resuscitation (CPR), although neither has received CPR training. She arrives to the emergency department obtunded, and urgent computed tomography scanning of the brain reveals blood in the left cerebral hemisphere and subarachnoid space. She is taken emergently by neurosurgery to the operating room, where it is determined that she has experienced a rupture of a previously undiagnosed arteriovenous malformation. She has extensive hemorrhage into the left cerebral hemisphere. She undergoes a decompression craniectomy, and is transferred to the paediatric intensive care unit. Her parents are counselled from the outset that their daughter’s prognosis is extremely poor, and discussion about cessation of life-sustaining treatment begins the day after her admission. Repeat imaging over the next week reveals widespread hemorrhagic destruction of the left hemisphere and severe diffuse ischemic injury to the remaining cerebrum. The medical team is unanimous in assessing that her injury is profound, and that her long-term prognosis ranges from severe neurological dysfunction in the best case to a permanent vegetative state in the worst. Her devastated parents cannot believe that the doctors can be so sure of her outcome this soon after her brain injury. Maya’s parents cannot, therefore, agree to cessation of any form of life-sustaining treatment. On day 10 postadmission, she remains completely unresponsive, with labile body temperature and blood pressure. She is ventilated, and only occasionally breathes above the ventilator rate.
ituations in which the health care team believes continuing or intensifying treatment will only prolong the child’s dying, or be of such marginal benefit to the patient as to be unjustifiable are, unfortunately, not rare. Neither is it rare for parents to be completely unprepared for having to make these decisions, especially at the beginning of a catastrophic illness or injury. Parents and health care teams often come to agree on a course of action over a period of time, as each party comes to better under-
stand the other and the reality of the child’s long-term prospects become more obvious. Rarely, however, opposing beliefs about appropriate goals or direction of care become more polarized, and further discussion appears only to escalate the conflict. Reasons why parents and clinicians may differ in their perspectives are explored, starting from a discussion about medical decision making for children generally.
Because young children lack the capacity to decide for themselves, they rely on substitute decision makers (SDMs) for their health care decisions. The usual SDM is the parent(s) or guardian. The SDM is charged with considering the relative benefits versus burdens of a treatment, from the child’s point of view. To do so is to assess the child’s best interests. Sometimes, the prognosis is much less certain than in Maya’s case, and it becomes difficult to assess how much treatment can be justified in the face of unclear benefit to the child. It is widely held that, when the outcome is ambiguous, parents be given significant authority to guide the decisions because they are the ones who will have to live with the consequences (1). Carnevale (2) reasons that in many life-and-death dilemmas involving children, the decision to be made truly represents a choice only between ‘two evils’, each option similarly horrible to parents and professionals. Therefore, the expectation that parents should undertake a rational balancing of benefits and harms is unrealistic. Such a decision, he argues, will leave lives marred, regardless of the option taken. Clinicians in practice will recognize the frequency with which truly tragic situations arise, in which there can be no true benefit to the child. The challenge then becomes determining the ‘least worst’ option rather than the ‘best’ option when no good outcome can be achieved.
Prevention of Harm as the Parental Standard for Decision making
The issue of harm deserves particular mention. In Western societies, parents are granted fairly wide latitude to do what they believe is right on their child’s behalf, even if arguably not the ‘best’ thing for the child. Diekema (3), a physician and wellrecognized bioethicist, offers the simple example of exposing children to the risk of injury in a motor vehicle accident when travelling by car so that a parent can get a cup of coffee. He argues, through this example, that intervention by authorities other than a child’s parents is warranted not when the parent
of Pediatrics, University of Alberta; 2Palliative Care, Stollery Children’s Hospital; 3Department of Anaesthesiology, University of Alberta, Stollery Children’s Hospital, Edmonton, Alberta Correspondence: Dr Dawn Davies, 3-533 ECHA, 11405-87 Avenue, Edmonton, Alberta T6G 1C9. Telephone 780-248-5505, fax 780-407-7203, e-mail [email protected]
Accepted for publication February 2, 2015
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fails to do the best thing for a child, but only when the parents transgress their responsibility to reasonably prevent harm to their child (3). This example leads us to consider that, while those of us more removed from the child/family unit endeavour to provide care to the standard of the child’s best interests, this is an artificial standard for parents. Asking parents for permission to forgo further treatment such that their child is allowed to die contravenes the innate reaction of parents to protect their child from this ultimate harm – death.
Respect for Autonomy
Respect for one’s autonomy and, by extension, respect for parental autonomy is also an important feature of North American culture, whereas European countries may remain more paternalistic in treatment decisions for children (4). In Canada, individualism and diversity are embraced and encouraged. These factors likely contribute to some parents’ belief that they should have the final say on their child’s medical treatment. Lantos (5), who has written extensively about paediatric ethical dilemmas, reasons that autonomy is a complicated phenomenon. While individuals tend to believe themselves to be independent moral agents, he argues that one’s moral intuitions arise from one’s earliest childhood experiences, shaped by the cultures and ways in which one is raised. This intersection of respect for individualism and respect for autonomy leads to the prevailing norm of shared decisions made between patients/parents and clinicians. In a truly multicultural country, however, one ought not to presume that parents will wish to engage in making serious health care decisions on behalf of their child: parents should be asked about this directly and early. Some parents, such as Maya’s, will want to engage as equal partners with the health care team. However, some parents will regard this responsibility as the purview of the medical team, and view participation in the decisional process as an unwelcome burden. Parents may ask their clinicians to make recommendations for their child’s treatment, or even ask what the clinicians would choose if their own child was in this situation. Some may even ask their physicians to make the decision for them, because they feel physicians ‘know best’. Whether it is ethical for a child’s physician to be the child’s proxy decision maker was the topic of a recent article, and despite the many valid reasons that such a role should be considered with great caution, the weight of opinion was that it could be (6). Respecting autonomy includes respecting parents’ stated wish for nonparticipation. In the case of ceasing life-sustaining treatment, parents may wish to be spared feeling potential complicity in their child’s death (4,7). In this light, making recommendations may be viewed as part of a physician’s responsibility, provided that he or she is honest about their rationales and potential biases (8,9). On the other hand, there are limits to the autonomy of parents and other SDMs. Recent court battles about the care of imperiled infants and children often centre on the question of whether SDMs or physicians should have final decisional authority. There is no clear consensus on this point (10). Regardless of which party wishes to shoulder most of the burden for a treatment decision, prognostic uncertainty must be addressed when it is present, so that both the parents and the health care team can come to terms with the fact that decisions can only be made with the current and often imperfect information available, regardless of what may come to light in hindsight. Previous experiences of the parents, however, may also inform their decisions. 136
Maya’s 53-year-old paternal uncle was in a motor-vehicle collision as a youth, and his parents were apparently advised that he would be profoundly disabled. Although he lives in a group home, he can speak, and walks with a limp. Despite profound memory and judgment problems, he is able to participate in a variety of volunteer activities. They believe he enjoys life, and they wish to give Maya this chance. Additionally, Maya’s mother has often referred to her belief that a miracle may occur, such that Maya’s health may be fully restored. She begins a Facebook™ page, and receives many messages from others encouraging her not to give up. Many postings refer to recoveries from accidents and illnesses that are much better than doctors predicted. The back-story of a family is as important as the clinical history of the patient. When disagreements regarding direction of care arise, this information can help the team to better understand a family’s perspective. This family, for example, has had experience with a devastating neurological injury. In their story, the predictions of the physicians are perceived to have been wrong. However, personal narratives, as well as those reported in social media, are often incomplete and miss critical details. Asking parents to elaborate on their stories can provide the clinician important clues to the relevant differences that may exist between other situations and that of their child, whereas hope may lead parents to see only the similarities. Beyond the unique features of a particular family narrative, health care providers and parents differ in two extremely important ways. First, the parents and family are overwhelmed by their love for and attachment to their child, and have a very different stake in the continued existence of that child, sometimes in almost any condition. Parents can often reflect on a period of time during their child’s illness that ‘life at all costs’ may have trumped their prevailing perspective that quality of life is equally important (11,12). The health care team, on the other hand, while highly invested in the patient for whom they are currently caring, has a level of attachment that is considerably more remote than that of the parents. Another important difference is that parents will most often be naive to their current situation, unless they have another affected child or have witnessed a similar illness in a loved one. Without that, parents most often rely on their expert knowledge of their child in coming to a decision. Clinicians will hear statements such as “He’s a real fighter”, or “We’ve been told so many times before now that she wouldn’t make it, but she’s always pulled through”. In the case of chronic serious illness, the child’s personal history of survival may portend likelihood of continued survival. Unlike clinicians, parents lack the experience of having cared for many other children who are similar to their child in important ways. Cumulative clinical experience, in combination with medical knowledge and judgment, may lead clinicians to recognize that treatment will not lead to the desired outcome. The parent, lacking this experience, is much more likely to be unsure. Fear of ‘giving up’ too soon can then lead to perpetuation of more treatment. Unintended harm born of good intentions has led to coinage of the term ‘benevolent injustice’ in the neonatal literature (13), and is part of the ‘fall-out’ in an era when death is sometimes a negotiated event (14).
Innovation, uncertainty and advances beyond the evidence base
In addition to human considerations, one must also consider the role of medical technological advances and their influence on treatment decisions. When novel interventions find a clinical application, or when the indications for established intervenPaediatr Child Health Vol 20 No 3 April 2015
tions extend into new patient populations, there is little evidence to guide practice. Our technological abilities to sustain life sometimes advance faster than our knowledge of the quality of outcomes. This is particularly true in paediatrics because the implications of treatment potentially play out longitudinally over years and decades, and across developmentally sensitive time periods. The unknown capacity for the young child to recover following serious illness increases the unease with an assessment of treatment being ‘too much’. In fact, the path to recognition of a poor prognosis is often much more circuitous than in the vignette presented, especially if numerous organs have been supported in hope of an ultimately unattained recovery. While knowing ‘everything’ was done may bring comfort to a family if the child dies, this can take the focus off the child himself, and may deny the child quality palliation at the end of life (15). Treatment perceived to have gone too far may cause moral distress for the team, and exacerbate the disagreement between health professionals and parents (16).
Being a good parent
Parents may also sometimes ask, “What kind of parent would I be not to do everything for my child?”. It is self-evident that most parents want to be good parents, and wish to be considered good parents by others. It is easy to understand how parents could believe that choosing the offer of more treatment, or asking for more time, equals better parenting. A useful strategy is to purposefully use the language of the ‘good parent’, and to address this issue directly by reassuring parents that the team can see what good parents they are, while helping them understand that more treatment is not recommended. Encouraging parents to participate in the hands-on care can bring the focus back to the day-to-day experience of their child, particularly if there is concern that prolongation of treatment is causing additional suffering.
The element of time
Wolfe et al (17) revealed that there was a lag of 100 days between parents of a child with cancer and the child’s oncologist in recognizing that a child had no realistic chance of cure. Three months is a long time for the medical team and the parents to have different understandings of this reality, especially when a child is hospitalized. When life-altering information about a child is shared, it rarely results in changes to the care plan in a single meeting (18). Decisions are often arrived at through a series of discussions, over days and weeks. During this time, continuity of care is a challenge because the health care team is often large, and its members change frequently. Parental perceptions of inconsistent or mixed messages can lead to mistrust. Similarly, attempts to preserve optimism when a prognosis is dire or to provide only partial information in a well-intentioned attempt to ‘soften the blow’ can leave families ill-prepared for next steps in end-of-life care planning. Studies consistently demonstrate that parents prefer straightforward and honest appraisals of their child’s condition from trusted professionals well known to them (19,20). References
1. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forgo life-sustaining treatment: Ethical, medical and legal issues in treatment decisions. 1983:223. 2. Carnevale FA. The birth of tragedy in pediatrics: A phronetic conception of bioethics. Nurs Ethics 2007;14:571-82. 3. Diekema DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theor Med Bioeth 2004;25:243-64.
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One physician in the paediatric intensive care unit is identified to act as Maya’s primary physician and, along with the neurosurgery nurse practitioner, regular dialogue occurs with both parents. The child’s family doctor, who has seen Maya only for well-child check-ups, has a longstanding relationship with the father’s family, and has visited a number of times to provide counsel and support. During this time, Maya’s mother speaks regularly with the spiritual care practitioner. Her husband supports this relationship, but does not feel he wants to participate in these conversations. She also speaks on the telephone with a parent-mentor, whose son died after a long illness. Maya’s mother values the opportunity to ask questions of this bereaved mother, and feels that this mentor can truly understand what she is going through (21). The next day during rounds, Maya’s parents tearfully ask to see their primary physician. They tell him that good friends flew in from another province to surprise and support them. They talked late into the night, but what has stuck with both parents was the look of horror on the other couples’ faces when they first saw Maya. Maya’s mother states that it made them really start to wonder who they were doing all this for: Maya or themselves. They do not want to talk any further. Later that afternoon, Maya’s mother tells the spiritual care practitioner that they are ready to let her go. Maya’s endotracheal tube is removed. She continues to receive enteral feeding, but all other medications are ceased. She dies 16 h later, almost one month after admission to hospital.
Clearly, there is no magic solution to prevent and manage disagreements that may arise when health care professionals believe parents are requesting treatments for their child that exceed reasonableness. However, the present vignette does offer some strategies. Health care teams will likely be more patient with the decisional process if they can start with an understanding that parents likely will have delayed realization and acceptance of their child’s prognosis. Clinicians must be willing to give parents time and space for this process to happen, rather than put pressure on families to come to decisions. The evidence also demonstrates there are actions that the health team can take that may mitigate conflict and facilitate mutual understanding. Providing the best possible continuity of care within the health team fosters trust and belief that the child is being well cared for (22). It is also clear that coming to a decision about a child’s treatment extends far beyond the scientific information that clinicians try to convey to parents, and that other values very much come into play: parents’ previous life experiences, relationships with family and close friends, their faith, their security in their role as parents and, perhaps most importantly, their need for hope. As much as possible, support for these critical elements should be offered to the greatest extent possible, and be viewed as part of the treatment plan.
4. Carnevale FA, Canoui P, Cremer R, et al. Parental involvement in treatment decisions regarding their critically ill child: A comparative study of France and Quebec. Pediatr Crit Care Med 2007;8:337-42. 5. Lantos JD. What we talk about when we talk about ethics. Hastings Cent Rep 2014;44(1 Suppl):S40-4. 6. Black PG, Derse AR, Derrington S, Lantos JD. Can a patient designate his doctor as his proxy decision maker? Pediatrics 2013;131:986-90.
Commentary 7. Kon AA. The “window of opportunity”: Helping parents make the most difficult decision they will ever face using an informed non-dissent model. Am J Bioeth 2009;9:55-6. 8. Quill TE, Brody H. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med 1996;125:763-9. 9. Ross LF. Why “doctor, if this were your child, what would you do?” deserves an answer. J Clin Ethics 2003;14:59-62. 10. Dyer C. Parents fail to overturn ruling not to resuscitate baby. BMJ 2005;330:985. 11. Parents of Brain-Damaged Baby Given More Time. January 27, 2010 (Accessed November 14, 2014). 12. Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008;122:583-9. 13. Barnum B. Benevolent injustice: A neonatal dilemma. Adv Neonat Care 2009 Jun;9:132-136. 14. Cribb R. Wife wants her husband kept alive at all costs. Toronto Star. October 22, 2012 (Accessed November 14, 2014).
15. Cox SR. A piece of my mind. Everything. JAMA 2002;287:2913-4. 16. Austin W, Kelecevic J, Goble E, Mekechuk J. An overview of moral distress and the paediatric intensive care team. Nurs Ethics 2009;16:57-68. 17. Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. JAMA 2000;284:2469-75. 18. Wolfe AD, Frierdich SA, Wish J, Kilgore-Carlin J, Plotkin JA, Hoover-Regan M. Sharing life-altering information: Development of pediatric hospital guidelines and team training. J Palliat Med 2014;17:1011-8. 19. Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004;363:312-319. 20. Meyer EC, Snelling LK, Myren-Manbeck LK. Pediatric intensive care: The parents’ experience. AACN Clin Issues 1998;9:64-74. 21. Empowering a Family Centered Network: Engaging Families Beyond a Council. Proceedings of The 6th International Conference on Patient and Family-Centered Care: Partnerships for Quality and Safety. August 2014, Vancouver, British Columbia. 22. Christakis DA, Wright JA, Zimmerman FJ, Bassett AL, Connell FA. Continuity of care is associated with high-quality care by parental report. Pediatrics 2002;109:e54.
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