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Goldberg Introduction Dialysis is a lifesaving intervention for children with end-stage kidney disease (ESKD) and in well-resourced countries serves as the default treatment for children until successful kidney transplantation In some cases, it may be appropriate to withhold dialysis altogether or withdraw it once started A decision to so requires a thoughtful and multidisciplinary approach to a complex problem [1] Withholding dialysis is defined as foregoing dialysis in a patient for whom dialysis has yet to be initiated (i.e., never starting) Withdrawal of dialysis means the discontinuation and forgoing of ongoing dialysis therapy (i.e., stopping after dialysis has been started or attempted) Both A Wightman (*) Divisions of Nephrology and Bioethics and Palliative Care, Department of Pediatrics, Seattle Children’s Hospital, University of Washington School of Medicine, Seattle, WA, USA e-mail: aaron.wightman@seattlechildrens.org B Ranchin Pediatric Nephrology Department, Hôpital Femme Mère Enfant, Hospices Civils de Lyon, Bron, France e-mail: bruno.ranchin@chu-lyon.fr A M Goldberg Department of Pediatrics and Child Health, Max Rady College of Medicine, Section of Pediatric Nephrology, Winnipeg, MB, Canada e-mail: agoldberg@hsc.mb.ca situations are similar in that life-sustaining treatments are possible but are not provided While generally considered ethically equivalent, they are often treated differently by patients, families, and medical teams making clinical decisions Withdrawal of dialysis is common, especially for adults In the United States, approximately one quarter of all deaths among adults who receive chronic dialysis occur after a decision has been made to withdraw dialysis, and withdrawal of dialysis is the second leading cause of death among adult chronic dialysis patients in the United States [2] Less is known about withdrawal from pediatric dialysis, but an analysis of French-speaking pediatric nephrology centers from 1995 to 2001 found 50 cases where dialysis was withheld or withdrawn among 440 children with end-stage kidney disease (11.5%) [3] The most common reasons for withdrawal included concerns of subsequent quality of life, severe neurological handicap, and consequences of the disease on the family [3] This is consistent with other ill children, as withdrawal of life-sustaining treatments is a leading cause of death in both neonatal and pediatric intensive care units [4, 5] This chapter will explore the ethics of withholding and withdrawing dialysis in children in general and for specific situations and populations © Springer Nature Switzerland AG 2021 B A Warady et al (eds.), Pediatric Dialysis, https://doi.org/10.1007/978-3-030-66861-7_42 811 812 Ethical Considerations in Withholding and Withdrawing Dialysis Treatment he History of Dialysis Provision T and Ethical Implications It is important to understand the history of ethics in dialysis, both to better understand how resource allocation fits into this decision-making and the context in which the medical community, government funders, and the larger public view dialysis coverage and choices Many will be familiar with the infamous Seattle “God” committees of the 1960s as a turning point for both modern nephrology and modern bioethics [6, 7] Revealed to the lay public in a Life magazine article by Shana Alexander, the committee was actually called the Admissions and Policy Committee of the Seattle Artificial Kidney Center at Swedish Hospital This group of community members (a lawyer, a housewife, a labor leader, a clergy member, and others) was charged with deciding which ESKD patients would be able to access the extremely limited number of chronic hemodialysis chairs at Swedish Hospital Demand far exceeded supply; the Scribner shunt had only recently been developed and its use was still experimental, and there were more people with ESKD than the program could accommodate [8] At the time, patients under 18 years were not even considered as candidates, fearing the rigors of dialysis would be too traumatic for them [9] One of the biggest criticisms of the “God” committee was that the members placed a heavy emphasis on the candidate’s social worth Characteristics like high prestige occupation, religious attendance, and breadwinning position within a family made candidates more attractive to the committee, resulting in white, employed, churchgoing men receiving disproportionate access [10] When the public learned how the committee worked, there was a public outcry and a call for more dialysis chairs and better allocation decisions A committee chaired by nephrologist Carl Gottschalk recommended federal funding for all patients with ESKD, and President Nixon signed this into law in 1972 [11, 12] This A Wightman et al relatively wide coverage continues today, where emergency and often chronic hemodialysis is covered for most residents in well-resourced countries, even in the United States where access to other types of healthcare is far from universal One of the most persistent legacies of the “God” committees is the understanding that, at least for this particular therapy, the public supports the idea of providing it to all who need it, regardless of their presumed social worth or ability to pay [13] est Interest Standard and Harm B Principle in Pediatric Decision-Making The intricacies of the withholding and withdrawing of dialysis will be discussed in more detail later in the chapter, but it is first important to understand how high-stakes decisions are made in pediatrics in general The best interest standard has long been held as an appropriate decision- making tool for pediatrics and other cases in which a person is incapable of expressing their own wishes Described as “the option that maximizes the person’s overall good and minimizes the person’s overall risks of harm,” this standard has been used in ethical decision-making, as a legal standard for decisions involving incapable minors, and by the United Nations, whose Convention on the Rights of the Child states “In all actions concerning children… the best interests of the child shall be a primary consideration” [14–16] While there are invariably burdens associated with dialysis (discomfort, time away from home and school, complications such as infection, bleeding, etc.), dialysis is very often considered to be in the best interests of a child with ESKD by the medical team, family, and the child himself or herself compared with the alternative of comfort care only While the best interest standard is widely referenced in pediatric decision-making, it has a number of limitations It is sometimes difficult to define the best interests of a child, especially when it comes to complex and burdensome chronic treatment Dialysis may be well tolerated 42 Ethical Decision-Making in Pediatric Dialysis by some children but can be much more difficult for others It can be challenging to know what burdens and benefits are experienced, especially in children with no or limited verbal interaction (e.g., neonates, those with intellectual disabilities) Further, it can be difficult to accurately weigh the relative impact of both burdens and benefits, and disagreements about how much each matter can sometimes come down to a disagreement about values For one family, length of life may be of utmost benefit, and they may then be willing to accept dialysis even when it is more burdensome, whereas other families may more highly value the quality of life and may be willing to give up longevity in order to minimize pain or time spent in hospital Another criticism is that the best interest standard places the interests of the child centrally While this may make intuitive sense in most situations, the centrality of the patient does not necessarily take into account the effect that a decision will have on parents, other family members, or the larger society [17, 18] Pediatric dialysis can have real and lasting negative effects on the mental health, economics, and marital stability of families [19–21] Given the responsibilities placed upon families to provide dialysis, especially peritoneal dialysis (PD) or home hemodialysis, it would be unrealistic to discount the burden of the disease on the family It is possible that a choice in the best interests of the child would not be in the best interests of other children in the family or the family as a whole This impact is recognized by pediatric nephrologists as an important consideration in the withholding/ withdrawing conversation, with 68% of respondents (21/31) in one survey recognizing that the impact of the dialysis on the family was an important consideration [3] An additional criticism of the best interest standard is the absolutist nature of “best.” Selecting the best treatment option requires weighing values such as survival, comorbidities, quality of life, and burden of care It is possible that parents and the medical team may disagree on a treatment choice and both be making a decision consistent with their view of the child’s best interests Recognizing this limitation, oth- 813 ers have proposed utilization of a “reasonable interest standard” or “not unreasonable standard” rather than best interest standard [22, 23] With dialysis, it is clear that most “reasonable” parents would choose treatment in uncomplicated cases, but it is not clear what the “reasonable” parent would choose in more complicated situations, like the very young or very ill child While the “reasonable interest” or “not unreasonable standard” might make sense when asking parents to choose among different types of renal replacement therapy (e.g., peritoneal dialysis vs in-center hemodialysis vs home hemodialysis), using these standards to decide whether or not to forgo dialysis does not seem to be the right fit A better framework for considering parental refusal of dialysis treatment may be the “harm principle” developed by Diekema [17] The harm principle holds that parents should not be required to make the very “best” decision for their child in all situations but rather that they should not be permitted to make decisions that significantly increase the likelihood of serious harm as compared to other options This principle allows for the differing values that parents may place on benefits and burdens of treatment options when compared to the opinions of medical professionals, but does not allow for parents to refuse a treatment in which serious, imminent harm is expected to occur and where there is a reasonable intervention that could avoid that harm Such a standard might be reasonable to apply in situations where dialysis clearly provides more benefits than burdens An example might be a 6-year-old with acute kidney failure from diarrhea-associated hemolytic uremic syndrome, clear indications for acute dialysis, a high likelihood of renal recovery, and no known comorbidities If a parent refused medically recommended dialysis in this situation, it might be reasonable to apply the harm principle and explore whether the parent’s choice can be respected or whether their authority should be abrogated Such a decision would of course need due consideration and deliberation and likely the involvement of social work and other members of a multidisciplinary care team 814 The Technological Imperative Dialysis is a potentially lifesaving therapy, and the fact that it can be provided in pediatrics with excellent patient survival rates is something to be celebrated As with other high-technology interventions, it is increasingly recognized that doing something simply because we can it is not appropriate in all situations First described by Fuchs, the technological imperative has been suggested as something which is imprinted on physicians during training: the drive to use the best, most modern, and most high-tech interventions because they are available [24] It may be best understood at its core as “That which is possible to has to be done” [25] Pediatric nephrologists are well trained in the technical aspects of dialysis and can amazing things with the technology: providing dialysis for children weighing as little as 1 kg, correcting severe electrolyte abnormalities, and managing and saving the lives of children with poisonings, overdoses, and inborn errors of metabolism We are less well trained in holding back, declining to offer therapy when the burdens outweigh the benefits or when a patient or family does not want the treatment Understanding the technological imperative that is a natural part of our specialty and preparing to manage the emotional reaction that we may have when a patient or family desires to forgo medically available therapy is a lifelong challenge but one that we should be prepared to confront The technological imperative should not be allowed to stand in the way of shared decision-making as it sometimes is just as powerful to leave a tool unused Equivalence of Withholding and Withdrawing Dialysis The Equivalence Thesis holds that there is no ethical distinction between withholding and withdrawing life-sustaining treatments This means that if it is ethically permissible to withhold dialysis, it should also be permissible to withdraw the treatment, all other things being equal While the ethical equivalence of with- A Wightman et al holding and withdrawing dialysis is widely accepted, there may be an emotional distinction for the patient, family, and medical team [26– 28] A series of surveys have demonstrated that physicians and the lay public not feel that withholding and withdrawing life-sustaining treatments are the same, with most, though not all, preferring to withhold rather than withdraw life-sustaining treatments [29–34] Providers may sense that withdrawing dialysis or other life-sustaining treatments feels more distressing than simply withholding the treatment This may reflect a perception of greater moral agency, responsibility, and culpability on the part of the healthcare provider for a patient’s death associated with withdrawal of treatment (commission) vs never initiating life-sustaining treatment (omission) There is a tendency to describe a situation in which treatment has begun as “the train has left the station” and cannot be stopped [35] Nephrologists’ perceptions of a moral difference between withholding and withdrawing dialysis may result in negative consequences for patients Implicit belief that withholding is preferable to withdrawing can result in both inappropriate undertreatment (reticence to begin therapy due to concerns that once begun it cannot be stopped) and overtreatment (failure to withdraw harmful treatment once started) Overtreatment may result in waste of limited medical and financial resources by insisting on a therapy that is no longer beneficial or desirable for the patient [28, 36, 37] Others who feel withholding dialysis is more problematic than withdrawal may require all patients to undergo dialysis treatment, as withholding precludes a dying patient of a chance, even if extremely limited, of benefitting from dialysis treatment While this approach offers the opportunity for unlikely patients to benefit, it would result in suffering for the majority who will not benefit and significant waste of resources by providing treatment unlikely to be beneficial [34, 38, 39] The distinction between withdrawing and withholding dialysis is, in fact, morally and legally irrelevant Both not initiating and stopping life-sustaining therapy can be justified, 42 Ethical Decision-Making in Pediatric Dialysis depending on the circumstances [28, 40, 41] Given the consequences that arise from implicit beliefs of moral differences between withholding and withdrawing, nephrologists would be better served to combine the concepts into a single term, forgoing It is that term which we will use for the remainder of this chapter 815 The RPA guidelines, along with the American Academy of Pediatrics, recommend that physicians develop a patient-physician relationship that promotes family-centered shared decision- making [27, 46] Shared decision-making involves clinician-family collaboration and culminates in a decision arrived at through consensus of the involved groups [47] Family-centered shared decision-making respects parental authorConsiderations for Forgoing Dialysis ity in medical decision-making for children and is supported by the ethical principles of benefiThe 2010 Renal Physicians Association (RPA) cence, nonmaleficence, and respect for autonGuidelines on Shared Decision-Making in the omy If parents request to involve other family Appropriate Initiation of and Withdrawal from members, these requests should be respected Dialysis recommend forgoing dialysis if the ini- Although children generally not have legal tiation or continuation of dialysis is deemed to be authority to make independent healthcare deciharmful or of no benefit, and to strongly consider sions, it is important to involve children in the forgoing dialysis in a patient with a terminal ill- decision-making process to the extent it is develness whose long-term prognosis is poor [27] opmentally appropriate In addition, other memSimilarly, the European Paediatric Dialysis bers of the medical team, potentially including Working Group (EPDWG) clinical practice rec- the patient’s pediatrician, intensivist, and any ommendations for the care of infants with stage other relevant subspecialist, should be encourchronic kidney disease recommend forgoing aged to participate in coordinating care related to dialysis if the expected short- or long-term prog- treatment decisions made by the family In the nosis is poor, there are significant concurrent setting of a child with multiple medical comormedical care issues, or the predicted quality of bidities, decisions about dialysis should be made life for the child and the family is likely to be in the context of other life-sustaining treatments poor [42] It is important to recognize that a deci- including ventilators, parenteral nutrition, and sion to forgo life-sustaining treatments is not the the provision of intensive care same as forgoing care [43] An intensification of Parents should be provided with information palliative treatments should occur in conjunction regarding the risks, discomforts, side effects, and with any decision to forgo dialysis This is espe- benefits of treatment alternatives including dialycially important as palliative care may be under- sis and comfort care only As part of these discusutilized for children with ESKD [44] sions, the nephrologist should provide their recommendation of the best option for the child, citing reasons for their recommendation based on Process of Forgoing Dialysis medical, experiential, and moral factors [48] Importantly, changes in a patient’s prognosis may There is no universally accepted criterion in pedi- change the nephrologist’s recommendations The atrics for withholding or withdrawing of life- family should be informed of this change without sustaining treatments such as dialysis Decisions delay [45] should be individualized and consistent with the Care should be given to ensure that symptoms interests of the child and with consideration of are minimized to the greatest degree possible and the benefits and burdens resulting from continued that patients experience a “good death” whenever renal replacement therapy Choices should reflect possible, defined by patients and families as one the patient and family’s goals of care that are which is “pain-free, brief, peaceful, occurring in achievable and should be centered upon the the presence of loved ones, and at the place of patient’s quality of life [27, 45, 46] one’s choice” [49] Some parents may request ... 812 Ethical Considerations in Withholding and Withdrawing Dialysis Treatment he History of Dialysis Provision T and Ethical Implications It is important to understand the history of ethics... Equivalence Thesis holds that there is no ethical distinction between withholding and withdrawing life-sustaining treatments This means that if it is ethically permissible to withhold dialysis,... recommended federal funding for all patients with ESKD, and President Nixon signed this into law in 1972 [11, 12] This A Wightman et al relatively wide coverage continues today, where emergency