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Decision Making in Pediatric Oncology: Who Should Take the Lead? The Decisional Priority in Pediatric Oncology Model

From the Department of Family and Community Medicine; Center for Medical Ethics and Healthy Policy, Baylor College of Medicine; Center for Clinical Research; Center for Nursing Research, Texas Children's Hospital; Texas Children's Cancer Center, Texas Children’s Hospital and Baylor College of Medicine, Houston, TX

Address reprint requests to Simon N. Whitney, MD, JD, Department of Family and Community Medicine, Baylor College of Medicine, 3701 Kirby Dr, Suite 600, Houston, TX 77098; e-mail: swhitney{at}bcm.edu

	ABSTRACT

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Decision making in pediatric oncology can look different to the ethicist and the clinician. Popular ethical theories argue that clinicians should not make decisions for patients, but rather provide information so that patients can make their own decisions. However, this theory does not always reflect clinical reality. We present a new model of decision making that reconciles this apparent discrepancy. We first distinguish decisional priority from decisional authority. The person (parent, child, or clinician) who first identifies a preferred choice exercises decisional priority. In contrast, decisional authority is a nondelegable parental right and duty, in which a mature child may join. This distinction enables us to analyze decisional priority without diminishing parental authority. This model analyzes decisions according to two continuous underlying characteristics. One dominant characteristic is the likelihood of cure. Because cure, when possible, is the ultimate goal, the clinician is in a better position to assume decisional priority when a child probably can be cured. The second characteristic is whether there is more than one reasonable treatment option. The interaction of these two complex continual results in distinctive types of decisional situations. This model explains why clinicians sometimes justifiably assume decisional priority when there is one best medical choice. It also suggests that clinicians should particularly encourage parents (and children, when appropriate) to assume decisional priority when there are two or more clinically reasonable choices. In this circumstance, the family, with its deeper understanding of the child's nature and preferences, is better positioned to take the lead.

	INTRODUCTION

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Pediatric oncology is characterized by challenging decision making. At the time of diagnosis, the family is new to this cancer, strangers to the oncologist and team who will be providing care, and often face a situation in which urgent action is required even if the long-term prognosis is favorable. When pediatric cancer relapses, the family and clinicians are usually in an established, trusting relationship, but they must now confront the fact that the initial treatment plan has failed and the possibility that this cancer will be fatal. These people—clinicians, parents, and child—must choose from among the treatments available at each stage of the disease. There is no ethical consensus about how they should collaborate in this process, although it has been argued that the family, not the clinician, should make the decisions.¹

This article describes an ethically justified, clinically applicable approach to decision making in pediatric oncology. We first describe the ethical and legal roles of parent and child, and then introduce the critical issue of how the clinician should join them in decision making. This lays the foundation for a model that shows how the roles of each individual vary depending on the specific clinical circumstances at hand. The model integrates ethical theory with the concrete realities of clinical medicine as family and clinician struggle to find the right choice for this child, with this malignancy, at this moment.

	ROLES OF PARENT, CHILD, AND CLINICIAN

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Parents' ethical and legal authority over their child's medical care is a function of their responsibility to promote their child's health-related interests. Parental ethical authority is increasingly shared with the child as the child matures, for children have a right to express their opinions and to have those opinions taken into account in making treatment decisions.^2,3 Adolescents, especially those who have experience with chronic illness and its treatment, which includes some pediatric cancers, may be sufficiently mature and knowledgeable to make their own medical decisions, even though legal authority continues to reside in their parents.^4,5 The more mature the child's reasoning, the more seriously his or her treatment preferences should be considered, with the clinician becoming an advocate, when necessary, for the child's decision.² For this reason, although the legal authority for decision making rests squarely with the parents, the ethical concept of pediatric assent calls for the child also to be involved to the maximal extent consistent with the child's developmental capacity. This approach to pediatric decision making is dominant in the autonomy-centered medical cultures of the United States and United Kingdom; other countries and cultures sometimes have different ethical norms.⁶

Medical decisions can be made in three ways: by the clinician, by the patient, or by both in a shared process. There is widespread agreement that the model of clinician-centered decision making is ethically inferior and that patients (or, for a child, families) should play a more active role.^7,8 Well-known alternative models include shared decision making, in which the patient (or family) and clinician collaborate in making decisions,^9-14 and informed decision making, in which the clinician provides information but the actual choice is made exclusively by the patient.^15-17 Informed decision-making theory emphasizes clinician deference to the independent, autonomous choice of the adult patient. According to this view, an ethical clinician provides information and empowers the patient to make reasoned decisions.^17,18

Those who apply the informed decision-making paradigm to pediatric practice argue that the clinician should give the parents (and child, when appropriate) information about the child's diagnosis, the management alternatives, and the benefits and risks of each alternative, but decline to participate in making the actual choice. In accordance with this model, if one treatment alternative is better than another, the clinician should point this out to the parents, but must scrupulously avoid infringing on the parents' primary role in making decisions that concern their child. According to this view, if the parents ask the clinician to make a decision, the clinician should respectfully refuse this invitation to direct their child's medical care, and instead insist that the parents make their own choice. This theme of parent empowerment is prominent in current theory about decision making for the sick child.¹

However, clinical reality does not always follow this ethical model of decision making. Most families are keen to learn the clinician's recommendations and eagerly follow them, and many clinicians offer strong recommendations about preferred therapy. From the perspective of informed or shared decision making, this situation could be interpreted as the clinician usurping the parents' rightful decisional authority by taking advantage of his or her professional status and of the family's fear. We disagree, and believe that in certain circumstances it is ethically justified for a clinician to recommend a course of action and assume that the family will agree. For the child with newly diagnosed cancer, for instance, it would be absurd to pretend that the clinician merely offers the facts and the parents (and child) are independent decision makers.

	MICROSTRUCTURE OF MEDICAL DECISIONS

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A decision is not a unitary phenomenon; it is a process that unfolds in steps. For each decision, someone must first recognize that a choice may or must be made, identify the possible courses of action, specify the advantages and disadvantages of each alternative, and weigh the probability and desirability of each outcome. This preliminary work may be done by the clinician, by the parents, or may be shared by all. However, when the choices at hand can be compared in terms of medical benefit and risk, the clinician, as the medical expert, is typically the person to identify, evaluate, and explain the possible courses of action.

Once the viable options are identified and discussed, three steps remain in the decision-making process. As a practical matter, someone must first identify one option as better than the rest. The person who thus takes the lead in decision making assumes what we call decisional priority. The clinician, the parents, or the child may assume decisional priority. This recommendation (if made by the clinician) or request (if made by a parent or child) prepares the ground for decision closure.

The next step, to accept or reject the candidate choice, must be made by the person or persons with decisional authority. Decisional authority in pediatric oncology, as in pediatrics generally, vests in the parents for young children; adolescents assume decisional authority from their parents as they mature.² Finally, the choice must be authorized; this legal authority is a nondelegable function of the parents alone. These steps in the decision process vary depending on the particular decision to be made; Table 1 provides a hypothetical example.

	THE MODEL

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Although it is sometimes convenient to consider medical decisions as a single class, as if they were all more or less the same, close examination reveals them to be markedly heterogeneous. There are decisions to be made in the areas of prevention, screening, diagnosis, treatment, and public health; and there are decisions that involve a single person or that affect an entire family or community. Some decisions are straightforward, whereas others challenge even the most experienced clinician. Some decisions are rich in ethical and religious overtones, some have profound economic implications for other patients and for health care systems, some tax the clinician's negotiating skills, and some suggest multiple solutions, whereas for other decisions there is no good answer. In the face of this complexity, our ability to make good choices is enhanced by an awareness of the ways in which one decision varies from the next.^19,20

The Decisional Priority in Pediatric Oncology Model that we propose integrates the combined impact of two critical attributes of decisions for the child with cancer: first, the probability that this cancer can be cured; second, whether or not there is one treatment approach that is clearly superior. Each factor (curability and number of options) is taken as one axis of a two-dimensional decision plane, and all pediatric oncology decisions are arrayed within this plane (Fig 1). Because the number of reasonable options for any particular situation is a matter of not only of evidence but also of clinical judgment, intuition, and patient preferences, the number of options dimension is a continuum. In some specific clinical situations, most oncologists would agree that there is one best treatment option, or that two different treatments offer similar chances of success; these are the extremes for the number of options axis. In the intermediate case, one option is better than the other option, but its margin of advantage is small and might be reversed if the clinical environment or family preferences were different. The other dimension, chance of cure, is inherently continuous. We do not include "impossible" on the chance of cure axis because we sometimes do not know if a cure is possible until a sustained remission is achieved or the child dies. This uncertainty does not mean that a cure should be sought regardless of clinical circumstances, as will be discussed.

View larger version (53K): [in this window] [in a new window]   Fig 1. Decisional priority in pediatric cancer.

Models can be normative—a representation of what should be—or descriptive, mirroring the world we experience. This model is both. We begin with the "what is" of clinical medicine, use that experience to shape the theoretical model, and use the model, in turn, to reflect back on "what should be."

The clinician's decisional priority is at its strongest when there is one clear best treatment option and cure is probable. As an example, consider a child with newly diagnosed Wilms' tumor (Fig 1, example A). Surgery, with chemotherapy if indicated by tumor size and histology, will produce a 4-year survival rate of 98% in children with this disease.²¹ In such cases, where one well-established treatment plan offers the best chance of cure, parents almost invariably defer to the clinician's suggestion. It is assumed that the preferences and beliefs of parent and child, such as their fear of surgery or concern about the adverse effects of chemotherapy, are inconsequential in comparison to the overarching goal of saving the child's life. Although there may be much to discuss, and it is important to educate the family about why this option is the best,²² the clinician assumes decisional priority and makes a definite recommendation. Most parents accept the recommendation and, although they are informed about the decision, play no role in selecting the treatment option. This clearly exemplifies a clinician-centered decision, but it is not unwarranted clinician paternalism. Empirically and ethically, the clinician has decisional priority because his or her knowledge, based on the best available evidence as applied to the child's circumstance, indicates that this is the most effective treatment approach. The clinician assumes decisional priority and the parents exercise decisional and legal authority; this is an ethically appropriate division of the work of decision making.

Decisions may fall at the "no best option" extreme under three circumstances. Sometimes there is a single standard treatment that is being refined by a randomized trial. In this case, there is no reason to believe that standard therapy is better or worse than the experimental arm of the trial. Consequently, in this scenario, there are two levels of choice between presumed equivalent treatment regimens. The first choice, made by the parents, is between the standard regimen and clinical trial entry. If the parents choose to have their child participate in the trial, they authorize a second choice, to accept assignment by a randomization process to either the standard regimen or the investigational protocol. Ethical theory suggests that the parents (or mature child) should assume decisional priority in this circumstance; in practice, clinicians often suggest entry onto a clinical trial. Parents sometimes exercise their decisional authority by rejecting this suggestion.

In a second example of the "no best option" possibilities, there is a well-defined trade-off between different treatment paths. The example we use (Fig 1, example B) is that of a young child with medulloblastoma, for which more aggressive treatment results in a higher cure rate but at a significant cost in cognitive function.²³ From an ethical standpoint, this is a perfect example of a decision that should be made on the basis of the family's values, preferences, and circumstances, because the family, not the clinician, will live with the consequences of the decision. In this example we support the approach recommended by the informed decision-making model, in which the clinician presents the risks and benefits of each alternative to the parents and asks them if they have a preference. In so doing, the clinician offers the parents decisional priority; if the parents select one alternative, they exercise it. If the parents have no preference, or simply cannot make a decision of this magnitude, then the best choice is to offer entry onto a clinical trial if one is available, because it is ethically superior to systematically study new treatments than to adopt or reject them without evidence.²⁴

In the third example of a "no best option" situation, there are two different treatment regimens that result, overall, in approximately equal cure rates and long-term adverse effects. Different schedules, potential toxicities, costs, and similar factors are all valid considerations when two alternatives have an equal chance of producing cure. In recognition of this fact, some clinicians (probably a minority in this particular circumstance) present the information and urge the parents to make their own choice. However, many parents still look to the physician for guidance in decisions of this kind.²⁵ We believe, in accordance with Schneider,²⁶ that parents think that the clinician, as the expert, is better positioned to judge whether the chance of cure might be just a little higher with one option than another or to suggest one option as better on other grounds. Physicians adapt their decision-making style to patient expectations,²⁷ and pediatric oncologists are accustomed to parents who reject decisional priority even when it is offered to them. To meet this parental expectation, some clinicians will proactively suggest one alternative as likely better than the other. Decisional priority in decisions of this kind may therefore be offered to the family or retained by the clinician.

The family has a strong claim to decisional priority when the chance of cure is slight and there is a reasonable choice between aggressive therapy and palliative care—a decision that will fall in the lower right corner of the model. Our example is that of an adolescent with acute lymphocytic leukemia who has had more than one bone marrow relapse (Fig 1, example C). Perhaps there is an option that might prolong life and offer a minute chance of a cure, but the odds of success are small, the risk of serious adverse effects is significant, and palliative care is a reasonable alternative. This treatment choice depends heavily on factors such as the child's current quality of life and the anticipated rigors of additional anticancer therapy. This case exemplifies the gradual transition from a setting in which cure is probable to one in which it is very unlikely but not impossible. A mature adolescent, one who understands the competing considerations and is experienced in undergoing anticancer therapy, is better positioned than the clinician to make this choice. The ethically optimal process in this situation is for the adolescent, with clinician and parental support, to assume decisional priority.

We turn now to the circumstance in which there is no treatment plan likely to produce cure or even remission; our example (Fig 1, example D) is an adolescent with osteosarcoma unresponsive to anticancer therapy with lung metastases and organ failure. In this case, aggressive palliative care is the single best treatment choice. Although the family may spontaneously request a transition to palliative care, our belief is that it is more often the clinician who takes the lead in explaining that the chance of cure is now so low that comfort and symptom control are more important than continued aggressive therapy. The clinician should therefore assume decisional priority and recommend palliative care.

This model demonstrates that the clinician has decisional priority when there is one clear best medical option, whether the chance of cure is significant or vanishingly small. When there is a good chance of cure, as shown in the upper left portion of the decision plane, the clinician leads the family toward cure and they willingly follow. When cure is no longer a realistic goal, as shown in the upper right portion of the decision plane, the clinician has an unwelcome but equally important obligation to guide the family toward choices that will maximize the child's comfort. In the lower regions of the plane it is reasonable for the parents and child to assume decisional priority, although the clinician should be ever ready to assist them in their decision-making work. Children who present with potentially curable cancers but who are not cured may pass over time from the region of clinician decisional priority, to the area of family decisional priority, and then back to the zone of clinician decisional priority.

	IMPLICATIONS FOR PRACTICE

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This model suggests that under certain circumstances there are valid justifications for clinicians to assume decisional priority. There are many practical reasons for this, including the complexities of treatment choices involving children with cancer,²⁸ the speed with which decisions must sometimes be made,²⁹ and patients' general tendency to look to their clinicians for guidance.^26,30 However, clinicians should be alert to circumstances in which it is appropriate for the parent (and child) to assume a more active role in decision making. This is particularly true when there are tradeoffs involving individual values and preferences, such as a choice between therapy that is intended to prolong life, even at some cost in patient suffering, and care that is meant to maximize patient comfort. Because the benefits and burdens of this choice are borne primarily by the child, this is a decision that is appropriate for the parent and child to make.

When standard care promises no additional benefit, the decision-making process moves to the upper right portion of the decision plane. The clinician now has an obligation to guide the family toward the single medically reasonable option, intensified palliative care. Sometimes the clinician's guidance fails because the family cannot accept the reality that their child will die. The result, too often, is a quixotic quest for cure that subjects the child to a long nightmare of dying. Sometimes, however, the clinician fails even to approach the subject out of a misguided reluctance to usurp parental decisional authority. The decision-making model supports clinician assumption of decisional authority in precisely this circumstance, which holds the promise of earlier provision of palliative care and a more humane dying process for the child with terminal cancer.

Just as clinicians vary in their styles of relating to families, including the extent to which they encourage families to assume decisional priority, families also differ. Parents' cultural backgrounds and spiritual beliefs vary, as do their preferences for involvement in decision making.^31,32 The age, maturity, and desire for participation of the child vary as well, with some children sufficiently mature that their preferences play a dispositive role.²

Clinicians know that each family prefers a different decision-making relationship with their clinicians. Many parents want no part of decisions that could, if the intervention fails, result in the death of their child; they want the clinician to make the choice and bear the responsibility. When parents prefer to have the clinician make these decisions, that is a valid autonomous choice, and wise clinicians accept this responsibility. In contrast, some parents, and particularly some adolescents, suffer from an overwhelming sense of powerlessness. Experienced clinicians find many ways, large and small, to include these families in the decision-making process, proffering decisional priority to them whenever possible.

In summary, we present an ethically sound, clinically applicable model that accommodates clinician expertise, parental decisional authority, and child assent. We see no conflict between family authority and the active role in decision making that clinicians sometimes take as a result of their knowledge and experience. The distinction between decisional priority and authority is the key to understanding that this process can be highly ethical.

This model identifies an ethically justified place for each of the three major decision-making paradigms. It helps explain why clinicians justifiably suggest specific choices for the family in some situations in what is unmistakably a clinician-centered dynamic. It also identifies those circumstances in which it is appropriate for the family to take the lead in making medical decisions—at these times the informed decision-making approach, with the clinician presenting the facts and the family making the decision, is appropriate. Finally, the shared decision-making approach, with clinician and family each participating actively in the process, is sometimes best.

We challenge ethicists to rethink the assumption that patients and families must take the lead if a decision is to be considered ethically sound. We challenge clinicians to ensure that they offer clear guidance when the evidence mandates one particular treatment approach, and to promote family decision making when the family is well positioned to make a choice and medical evidence is not available or suggests clinical equivalence among options.

We trust parents not only to make appropriate decisions for their children, but also to use appropriate decision-making processes, including the approval of choices suggested by others. We believe that most pediatric oncologists are guided by fundamentally sound ethical instincts, acting not as autocrats but as essential partners who sometimes take the lead in selecting the path to travel.

	Authors' Disclosures of Potential Conflicts of Interest

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The authors indicated no potential conflicts of interest.

	Author Contributions

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Conception and design: Simon N. Whitney, Angela M. Ethier, Ernest Frugé, Stacey Berg, Laurence B. McCullough, Marilyn Hockenberry Manuscript writing: Simon N. Whitney, Angela M. Ethier, Ernest Frugé, Stacey Berg, Laurence B. McCullough, Marilyn Hockenberry Final approval of manuscript: Simon N. Whitney, Angela M. Ethier, Ernest Frugé, Stacey Berg, Laurence B. McCullough, Marilyn Hockenberry

 

	Acknowledgment

 
We thank Pamela Paradis Tice, BA, ELS(D), for her skillful editing; two anonymous reviewers for their useful suggestions; and Robert Volk, PhD, and David G. Poplack, MD, for essential institutional support.

	NOTES

 
Supported by Grant No. K08 HS11289 from the United States Agency for Healthcare Research and Quality (S.N.W.) and a grant from the Arthur Vining Davis Foundation (E.F.).

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

	REFERENCES

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Submitted March 19, 2005; accepted August 17, 2005.

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