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

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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 account is ment options, or goals of care. substantial emotional components may able to acknowledge the fact that chil- Ethicists’ accounts of autonomy may be seen as undermining the rationality dren are dependent in significant ways, have intended a more nuanced in- that is a necessary component of au- and that their environments play a role terpretation than the in-control agent tonomy for the in-control agent. The in developing their interests, beliefs, model suggests. This nuance is often autonomous agent, by this account, ends, and judgments, the prescriptive lost in the clinical setting. Physicians in must strive for rationality and tran- force of the in-control agent model the United States are taught that au- scendence of our emotions to focus on emphasizes the realization of self- tonomy is all about individualism and the objective content of what is at stake. sufficiency, independence, and self- the rights of patients to make decisions This emphasis on rational reasons for reliance as a key goal of human life. without paternalistic interference by decisions has a significant influence on Although others may attempt to ma- physicians. Classic textbooks describe what parent decision-makers believe nipulate or persuade us, the goal is to autonomy as the right to make deci- should be motivating theirdecisions for attain a level of self-sufficiency and the sions for oneself and act accordingly,2,3 their child. Clinicians should provide independence necessary to critically an account that allows for an emphasis cognitive information; that is, “the reflect on one’s motivations and inter- on individualism that is common in US facts.” Parents should then interpret ests such that one can ignore this ma- 4 society. these facts in the context of their goals nipulative input. 5 for their child and should defend their Degner et al developed a conceptual Because children and adolescents in decisions in terms that are understand- framework for the role that patients most circumstances would not yet have able to others as not being overly influ- would want their physicians to take in achieved this independence,they would enced by emotional reactions. decision-making and recognized 5 dif- not be considered capable of partici- ferent orientations for the physician’s The virtues highlighted by the in-control pating in decision-making in a sub- role. The in-control agent would cor- agent account of autonomy are im- stantial way. The in-control agent does respond either to the physician not portant in preventing us from being too not emphasize how children move from playing a role in a patient’s decision- susceptible to seduction or manipula- a position of dependence to independence making at all or, at the most, an agent tion when discussing information re- in their decision-making. It assumes that would affirm that “I prefer to make the garding an important decision. The parents will preferentially praise and final decision about my treatment after account guards against succumbing to support choices that exhibit the highly seriously considering my doctor’sopinion.” a paternalistic clinician who presumes valued self-reliance and lack of influence The emphasis on self-reliance in this to know what is best for patients. The by others and that, by doing so, they will ’ account of autonomy prioritizes agents cliniciansresponsibilityistosupport help their teenagers attain the ability to as not being overly influenced by others parents and patients in engaging in in- act autonomously. in making decisions. In fact, reliance on formed, critical reflection. The in-control If the interests of adolescent patients theopinionsofotherfamilymembersor agent model would, however, also con- are considered in decisions, the in- medical professionals would be consid- sider as a violation of the patient’sor control agent model would expect ered highly suspect. family’s autonomy any suggestion by the that the kinds of reasons which would clinician about what to decide or to en- be respected are ones that privilege In-Control Agent Model Prizes gage (and potentially guide) the parents rational reasons, rather than ones that Rational Over Emotional in emotional discussions about how to prioritize emotional reasons or the The orientation taken by the in-control best love their child. This normative ac- patient’s relationship with others. agent conception of autonomy is to be count of autonomy proposes that we rational, self-sufficient, and sensible, should, and also can, by sheer act of will resistant to emotional persuasion and overcome the effects of grief and other THE RELATIONAL AUTONOMY therefore protected from yielding one’s emotions in the context of making deci- MODEL beliefs or being easily swayed from sions. Good parent surrogates will ad- In the 1980s, feminist philosophers putting into action one’s commitments equately manage their emotions before began to question these individualistic and personal preferences. If one is making decisions for their child. conceptions of agents and how they

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make morally acceptable decisions.6 well as with our traditions and with aspects of their child’s care and of their A growing recognition of how gender history). This view of autonomy leads to own experience as caregivers. Pro- differences privileged certain aspects a very different understanding of the viders should accept justifications for of moral knowledge led to the de- sorts of discussions in which we try to decisions that incorporate a broader velopment of an ethics of care, which persuade or influence one another. conception of the child’s needs in the shifted the focus of how we reason Being autonomous is not perceived to context of the family unit. about morally difficult choices. This be in conflict with valuing the input of feminist turn was also applied to con- others or engaging them in important The Relational Autonomy Model ceptions of autonomy. These philoso- decisions. Patients and parents do not Emphasizes Adolescent phers described a different way of abdicate their autonomy by asking Relationships thinking about autonomy that was re- trusted family members to make deci- Arelationalaccountofautonomyplaces lational rather than individualistic. sions for them or for their providers more emphasis on the development of As Mackenzie and Stoljar explain: to offer their opinions. An individual’s the capacities for autonomy of children Relational autonomy perspectives are interests are developed in conjunction and adolescents than the in-control premised on a shared conviction, the with others. They are re-described and agent model. In doing so, the re- conviction that persons are socially re-examined during challenging times. lational model recognizes that the embedded and that agents’ identities are Dialogue with others about these formed within the context of social embeddedness of relationships may relationships and shaped by a complex interests and choices is not an affront also have negative influences, particu- of intersecting social determinants, such to an individual’s autonomy in this re- larly on the burgeoning autonomy of as race, class, gender, and ethnicity. Thus lational account. It is, instead, the only individuals. Relational autonomy, such the focus of relational approaches is fl to analyze the implications of the in- way to allow autonomy to fully ourish. as in-control agent autonomy, has risks. tersubjective and social dimensions of 7 Relational Autonomy Unites Mackenzie and Stoljar articulate 3 selfhood and identity for conceptions of fi individual autonomy and moral and po- Emotion With Reason speci c ways in which oppressive so- litical agency.7 cialization can impede the development Centrally, a relational account of au- This relational understanding of agents of the capacities of agency. tonomy envisages the self-in-dialogue is diametrically opposed to the un- First, oppressive social relationships as one who is emotional and embod- derstanding implicit in the in-control can unduly influence, and sometimes ied as well as rational. This method agent model. This relational view of ’ allows for the account to emphasize even hijack, the formation of an agents subjectivity relies on the idea that none features of selves that are overlooked desires, beliefs, and emotional atti- of us is the sort of autonomous in- 7 by the in-control agent conception, such tudes. If children never have anyone dividual imagined by the in-control as the role of imagination and emo- validate their desires or emotional agent model. Instead, we are all what fi tional dispositions and attitudes in experiences, they may have dif culty Baier calls “second persons.”8 She decision-making. By highlighting the developing or articulating their wishes writes, “(P)ersons are essentially suc- emotional aspects of decision-making, and experiences. Second, these rela- cessors, heirs to other persons who a relational account acknowledges tionships affect the development of “ formed and cared for them, and their the highly emotional experience of competencies and capacities necessary personality is revealed both in their parents of significantly ill children. It for autonomy, including the capacities fl relations to others and in their response does not undervalue those emotions for self-re ection, self-direction, and self- ” ” to their own recognized genesis. In in their decision-making. Parents who knowledge. When adolescents are given ’ Baiers view, we all fundamentally and acknowledge their emotional experi- opportunities to make choices about ineradicably exist in relation to others. ence are not betraying their autonomy their lives, they gain important insights She acknowledges that both good and or the rational elements that are also in about who they are and who they are evil result from the fact of our in- play. Instead, it recognizes emotional becoming. Finally, these relationships terdependence but holds that self- responses as equally important. Thus, affect an individual’s ability to bring his realization is only achieved relationally. according to this view, providers focus or her autonomous desires or choices The relational model sees individuals’ not only on objective facts as a way of to fruition. identities, interests, ends, and beliefs helping patients or parents make Recognition of the role that others as fundamentally dynamic, continually decisions. They should also see it as can play in undermining the de- constructed and reconstructed in di- appropriate and helpful to engage velopment of capacities for autonomy alogic processes with other people (as families in discussions of the emotional has implications for how to approach

PEDIATRICS Volume 133, Supplement 1, February 2014 S19 Downloaded from www.aappublications.org/news by guest on October 2, 2021 the role of respecting the autonomy of They worry about usurping a parent’s shares with these other family mem- adolescents. Relational autonomy rec- autonomous decision. The consequence bers some family goals which are not ognizes a responsibility by providers to of this worry is that the burden of reducible to their individual goals).” engage adolescents in decision-making making a decision about forgoing fur- Lastly, the in-control agent model affects within the health care setting and offer ther treatment falls squarely and ex- howparentsandclinicians considerand them opportunities to develop these clusively on the parents’ shoulders.11 incorporatechildoradolescentpatients’ capacities. Importantly, there may be The in-control agent model also has input in decisions affecting their care. limits to an adolescent patient’sauton- implicationsforparentsinthepalliative Although this model has the big-picture omy. For example, parents may override care context. This individualistic ap- goal of supporting children’sin- the adolescent’s choice to forego mod- proach to autonomy is consistent with dependence to make decisions for erately effective treatment if they believe the expectation that parents make themselves and would perhaps offer it is in their adolescent’s best interest to choices for their children by maximi- small-scale decisions to practice these have a long-term future.9 zing their child’s best interests, skills, when dealing with a child with understood primarily as their child’s terminal illness, this longer-term goal THE IN-CONTROL AGENT self-regarding interests,12 ie, interests seems irrelevant or the stakes too high AUTONOMY MODEL AND in the child’s own well-being or other’s to offer “real” decisions to a patient PALLIATIVE CARE well-being if it promotes the child’s who has yet to demonstrate this in- 13 dependence and capacity to resist What are the particular consequences well-being. Parents are believed to be persuasion. In these circumstances, of autonomy as characterized by the in- the appropriate decision-makers for parents and providers validate deci- control agent for pediatric palliative their child because they know them sions by the patient that conform to care? As the case at the beginning of and their needs better than others do their assessments but may disregard this article illustrates, providers raised and are therefore best positioned to others that oppose their decisions, of- in the era of autonomy struggle with ensure that decisions maximally pro- ’ ten dismissing them as overly influenced whether it is ethically appropriate to mote their childs best interests. by the child’s emotional experience or guide parents in making significant This approach to autonomy has become their inability to reason about the po- decisions, such as whether to stop the primary standard by which clini- tential consequences. Although this ac- pursuing aggressive treatment. For cians are expected to judge parental tion is a pitfall that providers and adult patients, providers are unlikely reasons for decision-making. If parents parents can succumb to with any con- to provide a recommendation when weigh other family interests in deciding ception of autonomy, when the goal is the making life support decisions and only about their child’s medical decisions, in-control agent, few adolescents will be one-halfwillprovidearecommendation they are not living up to their obliga- able to act satisfactorily according to even when explicitly asked by a patient tions to their child. such a standard (nor would many or their surrogate.10 This reticence However, other ethicists argue for the women or individuals from many mi- flows from a conception of autonomy in legitimacy of considering other inter- nority cultures).15 which only the patient or parent can ests, including the parents’ interest be the ethically appropriate decision- in raising their children according maker and in which any attempt to to their own values. Buchanan and RELATIONAL AUTONOMY’S influence their decision is seen as Brock,14 for example, reject those the- ALTERNATIVE APPROACH ethically problematic. The overreliance ories that “accords to parents no in- If instead of privileging the individual, on an individualistic approach leaves dependent interest or right to decide we acknowledge the interconnectedness no room for clinicians or other family for their children and to enforce their of patients and families, the constraints members to substantially weigh in on choice when the choice may not best of respecting autonomy take a different treatment choices. The implicit mes- serve their children’s welfare.” Like- shape. It becomes legitimate for family sage given to parents who turn to wise, Ross9 argues, “to assume that an membersandmedicalprofessionalswho trusted care providers for help is that individual’s interests are purely self- are interrelated and connected to the “you’re on your own, and you should be regarding denies the intimate web in patient to weigh in on decisions in ways able to think clearly about this.” Pro- which an individual leads her life, and that make Dr Adams uncomfortable. viders who ascribe to this model im- in which the interests of other family With a relational approach, it is not un- plicitly assume that being autonomous members become part of her own reasonable for an adult patient to defer means being self-reliant and rational. interests (as well as the fact that she decisions to his wife if he believes that his

S20 WALTER and ROSS Downloaded from www.aappublications.org/news by guest on October 2, 2021 SUPPLEMENT ARTICLE well-being and identity are intrinsically treatment to avoid the emotional bur- advocate for the child, often over- linked to hers, nor is it unreasonable for den of the recommendation because looking the child’s expressed interests parents of children to ask for help from they too have held out hope for the or requests for control over aspects of their own parents (the child’sgrand- patient’s survival. As such, respecting his or her care. Conflicts may arise parents), other family members, friends, the autonomy of families may be used between what may be necessary to or health professionals. as an explanation for avoiding sit- maximize the child’s best interests and Clinicians who are trusted by patients uations in which we ourselves have the pediatric patient’s desires to be and families can now be “brought into other reasons to avoid them. fulfilled. Clinicians should model for the fold” and share in the responsibility For parents making decisions on behalf parents how to give a child patient of decision-making in ways that are of their children, a relational account of some level of control over his or her not acceptable for the in-control agent. autonomy expands the kinds of justifi- medical care, while acknowledging the ’ From a relational autonomy perspec- cations for decisions that would be parents sense of responsibility to en- ’ tive, the oncology fellow’s refusal to considered ethically appropriate. Just sure the childs basic needs are met. In offer guidance or a specific answer to as this account of autonomy challenges palliative care, clinicians can help ’ a direct question is a failure to live the pure individualism of the patient, parents put their childs comfort cen- up to one’s obligations as a clinician. it also challenges the best interests tral in their decision-making and help The professional role for providers standard as the only ethically relevant parents stay attuned for signs from the includes not just providing facts but benchmark for assessing the adequacy child that he or she wants more input also caring for the emotional needs of of adecision. In a relationalaccount, the in decision-making. patients and families in these chal- best interests of the child may need to In the end-of-life setting, however, a re- lenging situations. The trust and in- be balanced against the interests of the lational account of autonomy may timacy that arise from such an family. We still need to see that the support certain decisions that overrule emotionally charged encounter en- child’s basic needs are met, but it is a child’s expressed wishes if they will gender responsibilities in the pro- permissible to balance those needs have little impact on the child but sig- viders to not abandon families in these with the needs of other family mem- nificant impact on the family. One ex- difficult times. Instead, providers have bers and the needs of the family as ample may be an adolescent who is “ ” a moral obligation to help guide fami- a whole.9 A family’s decision to bring refusing an anointing of the sick, lies through the emotionally confusing home their terminally ill child may a sacrament in the Catholic tradition terrain of decision-making at the end mean forgoing certain kinds of treat- offered for seriously ill patients. If the of life. Backing away from these con- ments because it is important for the patient will be unaware of the sacra- versations or refusing to make rec- whole family’s grieving process to have ment, and the parents had indicated fi ommendations is an abdication of a the child at home. signi cant moral distress over the child not receiving such a religious provider’s responsibility to patients Children’s and adolescents’ prefer- sacrament, performing the anointing and families. The emotional realm is ences and choices regarding medical could be justified by the negative im- not off limits but offers essential care also are valued differently from pact that not having the sacrament insights into responsibilities of what it a relational autonomy perspective; would have on the surviving family means for parents to love their child.16 from the vantage of this model, health members. Decisions that in other cir- Privileging these emotions is ethically care providers bear the responsibility cumstance would be disrespectful of appropriate and should infuse the ’ to advocate for a childs autonomy in the child’s future autonomy are not discourse in palliative care, demon- the medical context. A relational ac- relevant in the end-of-life setting and, strating not only empathy but also ac- count recognizes that the capacities as such, health care teams must help knowledging the role of emotions in for autonomy are not developed de families cope with long-term implica- our decision-making. novo and that persistent forms of op- tions of short-term decisions. Providers may be reluctant to engage pression or undermining of one’s sense families in conversations about pallia- of self-respect and self-direction can tive care because they experience the have lasting effects on the ability to RELATIONAL AUTONOMY IN shift to palliative care as a failure of develop those capacities. Undermining PRACTICE their ability to cure the patient.17 They these capacities for chronically ill The ethicists met separately with Dr may also seek to avoid recommending children often occurs unwittingly, as Adams and with Jake’s family. In meeting that the patient forgo aggressive parents or clinicians “take charge” and with Dr Adams, it was clear that she

PEDIATRICS Volume 133, Supplement 1, February 2014 S21 Downloaded from www.aappublications.org/news by guest on October 2, 2021 thought that palliative care was the The ethicists encouraged Dr Adams to respect for parental autonomy and proper decision in this case. The ethics have another meeting with the family, also the developing autonomy of the team explored with her the various this time with both parents and their child. These different conceptions of understandings of what it means to support group. The ethicists encour- autonomy in turn have different impli- respect autonomy, reassuring her that aged her to make clear that all options cations for the role of providers. offering an opinion was not disre- were appropriate and reassured her In the context of pediatric palliative spectful of the parents’autonomy. To the that, if asked, offering a recommenda- care, the role of parents remains the contrary, the ethics team encouraged tion would not be disrespectful. The same: how best to make decisions on the oncologist to be a more active par- parents elected not to have their son at behalf of their child that respects the ticipant in a shared decision-making the meeting. The options were reviewed needs of the child in the context of the process to empower Jake’s parents and when asked what she would rec- family. What role the child should play is and to help them act in Jake’sbest ommend, the oncologist responded, “I complicated by the fact that the child interests. wish it were otherwise, but I do believe will never become a fully autonomous In the meeting with the parents, their that your son is suffering. I think fol- adult. Whereas there has been a move- distress was palpable, and the ethicists lowing the palliative care team’s rec- ment to promote the adolescent’s asked the parents if there were other ommendations for maximizing his emerging autonomy, particularly for support persons whom they would like comfort might best meet your goals for decisions that will have impact in present.Theparentsaskedtohavetheir Jake. I do not recommend the Phase I adulthood, this issue is sadly less rel- own parents (Jake’s grandparents) as trial.” The parents expressed a sigh of evant in the context of pediatric palli- well as their minister attend. All were relief and agreed to work with the ative care. As such, it may be appropriate in the waiting room, and the meeting palliative care team to develop a plan to give less weight to the child’sin- was resumed after a large enough that would let their son come home. terest in making decisions when those room was found and introductions The palliative care team discussed decisions conflict with the interests of were made. It was an emotional meet- issues of pain control and goals with the family as a whole. The implications ing in which the parents acknowledged Jake. As is often the case, he was more for the providers in guiding families that they thought Jake was suffering aware of the situation than his parents through incredibly challenging sit- but did not know how to stop. They also realized.18 uations can be drastically different acknowledged fear that they would under the 2 models. Reliance on a ra- disappoint the oncology team if they CONCLUSIONS tional and individualistic conception of stopped. The ethicists assured the How we conceptualize autonomy leads autonomy deters providers from guid- parents that their decision was a loving us to pose different answers about how ing families through difficult decisions, and morally valid choice. The grand- best to respect a family’s autonomy in and it may pit child against family at parents and minister concurred. decision-making, which includes both a time when they most need to support

TABLE 1 Implications of Different Theories of Autonomy for Pediatric Palliative Care Variable In-Control Agent Autonomy Relational Autonomy Acceptable reasons for decisions Rational reasons Rational and/or emotional reasons Who is decision-maker Patient’s surrogate Surrogate can rely on trusted intimates and providers for guidance or defer decision-making to them Adolescent participation in Limited, with goal of developing self-sufficiency Respects the voice of the adolescent with goal of promoting long- decision-making term autonomy. Balance short-term autonomy with other family interests Adolescent participation in Participation not relevant because Respects the voice of the adolescent, although more liberally end-of-life decision-making not yet fully self-sufficient balance other family interests because adolescent’s long-term autonomy is unrealizable Role of the provider Provides medical expertise Provides medical expertise; engages emotional experience of decision-maker; offers guidance in making decisions Amount of information given to surrogate Full information Full information Information given to adolescent Depends on patient’s decisional capacity Depends on patient’s decisional capacity and parents’ wishes patient in end-of-life care Role of emotion in decision-making To be overcome Acknowledges its importance and role Influence of others on patient Limited; to be avoided Expected; individuals exist in social context or surrogate decision making

S22 WALTER and ROSS Downloaded from www.aappublications.org/news by guest on October 2, 2021 SUPPLEMENT ARTICLE each other. By contrast, taking a more make decisions. The ethics inherent in guidance on the breadth of decisions relational approach to how individuals the relational autonomy model pro- that can express their love for their and families are always already entwined vides clinicians with ethical justifica- child. In Table 1, we summarize the in relationships that imbue their lives tion for directly engaging families in implications of different theories of with meaning leads providers to re- difficult conversations that acknowl- autonomy for decision-making in pe- spect autonomy by helping families edge emotions and for offering parents diatric palliative care.

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PEDIATRICS Volume 133, Supplement 1, February 2014 S23 Downloaded from www.aappublications.org/news by guest on October 2, 2021 Relational Autonomy: Moving Beyond the Limits of Isolated Individualism Jennifer K. Walter and Lainie Friedman Ross Pediatrics 2014;133;S16 DOI: 10.1542/peds.2013-3608D

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Downloaded from www.aappublications.org/news by guest on October 2, 2021 Relational Autonomy: Moving Beyond the Limits of Isolated Individualism Jennifer K. Walter and Lainie Friedman Ross Pediatrics 2014;133;S16 DOI: 10.1542/peds.2013-3608D

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