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Relational Autonomy: Moving Beyond the Limits of Isolated Individualism

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Relational Autonomy: Moving Beyond the Limits of Isolated Individualism Relational Autonomy: Moving Beyond the Limits of Isolated Individualism AUTHORS: Jennifer K. Walter, MD, PhD, MSa and Lainie abstract Friedman Ross, MD, PhDb Although clinicians may value respecting a patient’s or surrogate’s aPediatric Advanced Care Team and Department of Medical Ethics, Children’s Hospital of Philadelphia and Perelman School of autonomy in decision-making, it is not always clear how to proceed in Medicine at the University of Pennsylvania, Philadelphia, clinical practice. The confusion results, in part, from which concep- Pennsylvania; and bDepartment of Pediatrics and the MacLean tion of autonomy is used to guide ethical practice. Reliance on an Center for Clinical Medical Ethics, University of Chicago, Chicago, individualistic conception such as the “in-control agent” model Illinois prioritizes self-sufficiency in decision-making and highlights a decision- KEY WORDS autonomy, communication, ethics, palliative care, relational maker’s capacity to have reason transcend one’s emotional experience. autonomy An alternative model of autonomy, relational autonomy, highlights the Dr Walter conceptualized and drafted the initial manuscript and social context within which all individuals exist and acknowledges revised the manuscript; and Dr Ross conceptualized, reviewed, the emotional and embodied aspects of decision-makers. These 2 and revised the manuscript. Both authors approved the final conceptions of autonomy lead to different interpretations of several manuscript as submitted. aspects of ethical decision-making. The in-control agent model www.pediatrics.org/cgi/doi/10.1542/peds.2013-3608D believes patients or surrogates should avoid both the influence of doi:10.1542/peds.2013-3608D others and emotional persuasion in decision-making. As a result, Accepted for publication Nov 12, 2013 providers have a limited role to play and are expected to provide Address correspondence to Jennifer K. Walter, MD, PhD, MS, medical expertise but not interfere with the individual’s decision- Children’s Hospital of Philadelphia, 3535 Market St, Room 1571, Philadelphia, PA 19104. E-mail: [email protected] making process. In contrast, a relational autonomy approach PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). acknowledges the central role of others in decision-making, including clinicians, who have a responsibility to engage patients’ and surro- Copyright © 2014 by the American Academy of Pediatrics gates’ emotional experiences and offer clear guidance when patients FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. are confronting serious illness. In the pediatric setting, in which FUNDING: No external funding. decision-making is complicated by having a surrogate decision- maker in addition to a patient, these conceptions of autonomy also POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose. may influence expectations about the role that adolescents can play in decision-making. Pediatrics 2014;133:S16–S23 S16 WALTER and ROSS Downloaded from www.aappublications.org/news by guest on October 2, 2021 SUPPLEMENT ARTICLE Prologue Clinicians were now viewed more as range of reasons may be in decision- Jake, a 10-year-old boy with recurrent clinical experts whose job was to pro- making, and what role the clinician leukemia, had not responded to the last vide information for educated consum- should have in supporting patients and possible curative treatment for his dis- ease. Jake (not his real name) was ex- ers so that those consumers could families in decision-making. periencing uncontrolled bone pain. The control their own health care decisions. second-year oncology fellow, Dr Adams “ ” (another pseudonym), was well trusted Forty years later, however, it is unclear THE IN-CONTROL AGENT by the family and had been very involved what it means to “respect the auton- INDIVIDUALISTIC MODEL OF in Jake’s care throughout his illness. omy” of patients or their caregivers. In AUTONOMY Now, Dr Adams has consulted the palli- ative care service about both pain this article, we argue that this lack of The first model of autonomy that we ’ management and for help with decision- clarity about how to respect patients describe has been labeled the “in- making at this turning point for the pa- autonomy is a result of the variety of control agent” conception. This model tient. different ways that the concept of au- Dr Adams was distressed about meeting characterizes autonomous agents as with the family. At the last family meet- tonomy is understood. both highly individualistic and having ing, when they were considering These issues are especially complex in an ability for deliberation and rational whether to try 1 last, highly toxic regi- pediatrics because most ethical theo- men of chemotherapy or instead shift to transcendence of emotion, prioritizing a palliative treatment plan, Dr Adams ries assume a competent adult patient. the rational over the emotional. Detail- had felt conflicted about how to handle Patients may lack decision-making ca- ing the “autonomous man,” Code wrote ’ the parents direct question regarding pacity either because the patient is that: what they should do. She wanted to be compassionate and supportive of the a minor or the patient is an adult who is The autonomous man is—and should be family but did not want to violate the cognitively disabled. In both cases, —self-sufficient, independent, and self- parents’ autonomy by making a strong a surrogate is assigned to make deci- reliant, a self-realizing individual who recommendation of whether they should directs his efforts toward maximizing enroll Jake in a Phase I trial that had sions on behalf of the patient. In pedi- his personal gains. His independence is a low likelihood of extending Jake’s life atrics, parents are the presumed under constant threat from other or transition at this point exclusively to appropriate decision-makers, guided (equally self-serving) individuals: hence comfort care. he devises rules to protect himself from by the “best interests of the child” The parents were giving signals to the intrusion. Talk of rights, rational self- team that they did not want to make the standard, and their authority is only interest, expediency, and efficiency per- final decision about how to proceed. questioned if they are abusive or ne- meates his moral, social, and political They were clearly emotionally dis- glectful. Moreover, the work of pedia- discourse. In short, there has been traught. Given Dr Adams’ concerns about a gradual alignment of autonomy with 1(pp 77–78) guidance in decision-making, the palli- tricians is more complicated than that individualism. ative care team recommended an ethics of adult clinicians with regard to re- Interestingly, and importantly, the in- consultation to determine the ethically specting autonomy because not only control agent conception of autonomy appropriate range of actions by the are we tasked with respecting the au- medical team. highlights certain moral challenges tonomy of parents making decisions, The concept of autonomy has domi- and concerns (eg, our susceptibility as but we also have a responsibility, along nated medical ethics in the United decision-makers to seduction, manip- with parents, to support the burgeon- States since the 1970s. Autonomy was ulation, or emotional persuasion in ing autonomy of the children who are not just dominant in medical ethics. discussions about medical decisions) our patients. Many concurrent social movements while remaining silent about other In this article, we outline 2 conceptions challenges (eg, how we can unwittingly emphasized the rights and abilities of of autonomy and illustrate how they underminethe autonomy ofothersif we all individuals to have control over their affect our understanding of what it do not recognize our impact on their bodies and decision-making. The con- means for providers to respect the developing capacities). In response to cept of patient autonomy gradually autonomy of patients, parents, and anerainwhichpatientswouldnotknow replaced physician paternalism as the families. Indeed, what we consider the full extent of their diagnoses be- – guiding principle of the doctor patient morally valuable and acceptable cause physicians or family members relationship and decision-making. depends, to no small degree, on which would hide that information to protect Physicians no longer were expected model of autonomy we embrace. Our them, the in-control agent model of or allowed to withhold information conception of autonomy shapes how we autonomy demands that patients be from patients and families or make understand who is the ethically ap- given full information about their decisions based on what the physician propriate decision-maker in challenging diagnosis, prognosis, and treatment perceived to be best for the patient. decisions, what the ethically acceptable options. It also guards against the kind PEDIATRICS Volume 133, Supplement 1, February 2014 S17 Downloaded from www.aappublications.org/news by guest on October 2, 2021 of persuasion by others that ill indi- overcome by emotions, such as fear, In-Control Agent Model Views viduals or their loved ones are vul- anger, grief, or passion, one’s self- Adolescence as a Quest for nerable to in emotionally charged control is compromised, as is one’sra- Independence conversations about bad news, treat- tional agency. Discussions that exhibit Although the in-control agent
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