In the article “When Parents Refuse: Resolving Entrenched Disagreements with Parents and Clinicians in Situations of Uncertainty and Complexity,” Janine Winters (2018) gets a great deal right. She...

Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child’s maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment.First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally.Second, the (...) maternal grandfather’s ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values.Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents’ true wishes and debate how to weigh nonverbal and indirect forms of communication.Finally, building upon the conclusions of these queries, I explore whether, if the child’s prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment. (shrink)

Informed consent, decision-making styles and the role of patient-physician relationships are imperative aspects of clinical medicine worldwide. We present the case of a 74-year-old woman afflicted with advanced liver cancer whose attending physician, per request of the family, did not inform her of her true diagnosis. In our analysis, we explore the differences in informed-consent styles between patients who hold an "independent" and "interdependent" construal of the self and then highlight the possible implications maintained by this position in the context (...) of international clinical ethics. Finally, we discuss the need to reassess informed-consent styles suitable to the needs of each patient regardless of whether he or she resides in the United States or in Japan. (shrink)

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key (...) questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)

Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care from (...) longshot to fantasy using two pediatric cases. This progression may be differentiated into four distinct stages of care related to the potential of achieving the initial goals of care. Physicians are often ill prepared for the progression of treatments from a longshot hope to an unfeasible and, therefore, typically unjustified intervention. We present a structured approach to guide clinicians at referral institutions where these situations may be common. The transition of care from “longshot” to “fantasy” is an inherent part of quaternary care for the sickest of patients that has been underexplored. Physicians are often poorly equipped to approach that transition. We advocate this approach to the shift from longshot to fantasy with the belief that such a structured method will have multiple benefits, including: reduced suffering for the patient; decreased emotional burden on patient and family; decreased provider moral distress; increased likelihood of seeking high quality palliative care earlier; and provision of honest and straightforward information to patients and their families. (shrink)

Although there has been significant attention in clinical ethics to when physicians should follow a parent’s wishes, there has been much less discussion of the obligation to solicit viewpoints and decisions from all caregivers who have equal moral and legal standing in relation to a pediatric patient. How should healthcare professionals respond when one caregiver dominates decision making? We present a case that highlights how these problems played out in an ethical bargain. Ethical bargaining occurs when the parties involved choose (...) not to pursue a morally preferable option for the sake of coming to a resolution. This case is not one of parental disagreement; rather, the medical team agreed to exclude the patient’s mother from decision making if the patient’s father promised to bring their son back to the hospital for necessary medical tests. We argue that there is an obligation to notice and acknowledge power asymmetries in the family unit, which, in this case, was manifested as the marginalization of the female decision maker by the male decision maker. In these scenarios, clinicians should be careful to avoid treating parents as one homogenous unit, and they should take action to enable caregivers’ autonomy and voice. While there are moral and practical limits to how and when physicians should intervene in family dynamics, we discuss the steps that the medical team should have taken in this case to avoid undermining the parental authority of the mother. We conclude by offering recommendations to address and enable caregivers’ autonomy at an institutional level, and we discuss the importance of tracking and responding to damaging family dynamics to prevent ethically impermissible bargaining. (shrink)

The siren call of individualism is compelling. And although we have recognized its dangerous allure in the realm of adult decision-making, it has had profound and yet unnoticed dangerous effects in pediatric decision-making as well. Liberal individualism as instantiated in the best interest standard conceptualizes the child as independent and unencumbered and the goal of child rearing as rational autonomous adulthood, a characterization that is both ontologically false and normatively dangerous. Although a notion of the individuated child might have a (...) place in establishing a threshold of care obligated and enforced by the state, beyond this context we should turn our attention more explicitly to the relational interests of children. (shrink)

This article critically examines, and ultimately rejects, the best interest standard as the predominant, go-to ethical and legal standard of decision making for children. After an introduction to the presumption of parental authority, it characterizes and distinguishes six versions of the best interest standard according to two key dimensions related to the types of interests emphasized. Then the article brings three main criticisms against the best interest standard: (1) that it is ill-defined and inconsistently appealed to and applied, (2) that (...) it is unreasonably demanding and narrow, and (3) that it fails to respect the family. Finally, it argues that despite the best interest standard’s potent rhetorical power, it is irreparably encumbered by too much inconsistency and confusion and should be rejected. (shrink)

Published in the American Journal of Bioethics.

Informed consent is a perennial topic in bioethics. It has given the field a place in clinical practice and the law and is often the starting point for introductory instruction in medical ethics. One would think that nearly everything has been said and done on this well-worn topic.

Informed consent is a perennial topic in bioethics. It has given the field a place in clinical practice and the law and is often the starting point for introductory instruction in medical ethics. One would think that nearly everything has been said and done on this well-worn topic.

Inclusion of children in medical decision making, to the extent of their ability and interest in doing so, should be the default position, ensuring that children are routinely given a voice. However, optimizing the involvement of children in their health care decisions remains challenging for clinicians. Missing from the literature is a stepwise approach to assessing when and how a child should be included in medical decision making. We propose a systematic approach for doing so, and we apply this approach (...) in a discussion of two challenging clinical cases. The approach is informed by a literature review, and is anchored by case studies of teenagers' refusal of clinical care, regulatory requirements for research assent, and the accepted approach to involving cognitively impaired adults in medical decisions. (shrink)

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...) voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (shrink)

In Pakistan, as in many non‐Western cultures, decisions about a patient's health care are often made by the family or the doctor. For doctors educated in the West, the Pakistani approach requires striking a balance between preserving indigenous values and carving out room for patients to participate in their medical decisions.

The best-interests standard is a widely used ethical, legal, and social basis for policy and decision-making involving children and other incompetent persons. It is under attack, however, as self-defeating, individualistic, unknowable, vague, dangerous, and open to abuse. The author defends this standard by identifying its employment, first, as a threshold for intervention and judgment (as in child abuse and neglect rulings), second, as an ideal to establish policies or prima facie duties, and, third, as a standard of reasonableness. Criticisms of (...) the best-interests standard are reconsidered after clarifying these different meanings. (shrink)

The American Journal of Bioethics, Volume 11, Issue 11, Page 22-23, November 2011.

Within and among societies, there are competing understandings of the status of children, including debates over whether they can bear rights and, if so, which rights they bear and against whom, and their capacity to make decisions and be held responsible and accountable for actions. There also are different understandings of what constitutes a family; what authority parents have over and regarding their children; and what should happen to children who are without parents because of death, desertion, or imprisonment. These (...) and other related debates reflect deep differences in worldviews, in how one understands the legitimate role of the state, in how one comes to know the proper way to raise children, and so on. The United Nations Convention on the Rights of the Child purports to reflect international convergence on the rights of children, on how decisions concerning children should be made, and on how children ought to be treated by the state and by their parents. This paper examines whether the Convention's framework for decision making concerning children is an appropriate framework for pediatric bioethics. Questions about how to make health care decisions for children ultimately are questions of who is in authority to make and judge such decisions. Establishing who is in authority, determining whether there are any limits to that authority and, if so, defining those limits should be the focus of efforts to develop and implement a pediatric decision-making framework. (shrink)

To be autonomous, a person must also have authentic moral values. She must act on her own values, not on values that were improperly pressed upon her. To respect a patient's autonomy, then, a caregiver must do more than carry out her requests. The caregiver must honor the patient's authentic requests. But how to do that?

Akabayashi and Slingsby's (2006) article reminds us that the North American emphasis on individualistic autonomy is not universal. As the authors explain, personal identity in Japan is not construc...

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very common in (...) clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the treatment in question is open heart (...) surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

... and the baby has a large VSD. Otherwise appears well, gaining weight, smiling. No apnea, never been on ventilator. Local cardiac surgeon refused to operate, saying that surgery would be inappropriate. Have reached out to other centers, and some state that they never perform what they said was “futile” heart surgery on children with Trisomy 18, while other sites say they have and will continue to perform these operations. Can someone explain to me what is going on? In the (...) realm of medical care—given enough patients, clinicians, and time—conflict is inevitable. Someone will want to do something, such as give a drug or start a new form of technologic support, and someone else will think that this is a... (shrink)

This paper presents four different understandings of the family and their concomitant views of the authority of the family in pediatric medical decision making. These different views are grounded in robustly developed, and conflicting, worldviews supported by disparate basic premises about the nature of morality. The traditional worldviews are often found within religious communities that embrace foundational metaphysical premises at odds with the commitments of the liberal account of the family dominant in the secular culture of the West. These disputes (...) are substantial and ultimately irresolvable by sound rational argument because of the failure to share common foundational premises and rules of evidence. It is in light of these fundamental disagreements that there is a need to evaluate critically the claims and agenda advanced by the Convention on the Rights of the Child. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

In this article, I distinguish between 4 models for thinking about how to balance the interests of parents, families, and a sick child: (1) the oxygen mask model; (2) the wide interests model; (3) the family interests model; and (4) the direct model. The oxygen mask model – which takes its name from flight attendants' directives to parents to put on their own oxygen mask before putting on their child's – says that parents should consider their own interests only insofar (...) as doing so is, ultimately, good for the sick child. The wide interests model suggests that in doing well by my child I am at the very same time doing well by myself. My interests can, and plausibly do, encompass the interests of others; they are, to that extent, wide. There is, then, no sharp separation between the interests of the sick child and the interests of other family members. In the family interests model, families themselves are seen as having interests that are neither identical to the sum, nor a simple function, of the interests of individual family members. The family has goals, values, and aspirations that are essentially corporate rather than individual. According to this model, these family interests can explain why sacrifices can sometimes be demanded of some family members for the sake of others in a medical setting. Finally, the direct model takes a simpler view of family members' interests; it claims that these interests matter simply on their own and should be taken into account in making treatment decisions for a sick child. This model openly considers the competing interests that parents and other family members often have when caring for a sick child, and advocates for weighing those interests when making decisions for and about the sick child. While there is room for all four models at the bedside, I argue that the direct model should be highlighted in clinical decision-making. (shrink)