Ethical and Professional Considerations in Craniofacial Reconstructive Surgery

Ronald P. Strauss DMD, PhD

Margot B. Stein PhD

Carla Fenson M.Ed

Acknowledgments: The authors would like to thank Ms. Cassandra Aspinall for granting us permission to include Case 7, which she graciously shared with the authors.

Bioethical cases often make mass media headlines because they highlight important controversies in contemporary life. Issues regarding new medical technology, and how they affect freedom and dignity, are worthy of consideration by society at large and are regularly discussed in the most public political and social forums. However, the ethical dilemmas faced by surgeons and physicians in daily clinical practice rarely receive such attention. Indeed, such issues may even pass as mundane, often unrecognized as ethical dilemmas because they have become such a part of clinical routine.

What do we mean when we ask “what is an ethical question?” An ethical question is one that entails judgment about what is right and what is wrong. Ethical issues may relate to how the professional can most fairly and equitably respond to the needs or concerns of a patient or client. Ethical issues raise moral or values-based questions. In the context of craniofacial surgery, little attention has been given to the ethical and moral issues that arise in the course of relatively customary and routine clinical practice. We seek to highlight those situations in craniofacial surgery that raise profound ethical and social questions that have rarely been the subject of professional or media inquiry.

The primary goal of this chapter is to present a framework for understanding the nature of ethical issues that arise in the course of providing craniofacial surgery. A large portion of the chapter focuses on presenting cases deriving from real clinical situations to promote consideration of these issues. We understand that the use of case situations to explore ethical matters has some serious limitations. Cases are vignettes that simplify facts and occur out of context. They lack the texture of the doctor-patient relationship and rarely allow for nuanced situational analysis. Yet, they also present an excellent opportunity to examine how clinicians approach decision making and help to clarify professional and personal values. Examples or cases are often useful in making ethical issues real and allowing for debate and consideration of various options (1).

GENERAL PERSPECTIVES ON BIOETHICAL ISSUES

The Structure and Function of Ethics Committees

Physicians do not make bioethical decisions in a vacuum. The patient, family, the law, and health professional cultures all importantly contribute to ethical deliberation. Once a situation is identified as an ethical dilemma, it may then be examined from a variety of perspectives. The clinician who faces an ethical dilemma often
quickly becomes aware that no choice to be made will fully satisfy all parties. Indeed, this is the inherent nature of a dilemma. There is legitimacy to several “sides” in ethical debates. Clinicians who are accustomed to coping with uncertainty in their clinical lives may find themselves frustrated at their inability to resolve an ethical dilemma to their satisfaction. Thinking about an ethical dilemma may occur most effectively in social and interpersonal interaction, rather than in isolation. Consequently, many hospitals and academic health centers have established ethics committees to help deal with these issues.

The ethics committee characteristically includes various representatives—thoughtful physicians, spiritual leaders, community representatives, and lay members. Such committees serve two primary functions. First, ethics committees adjudicate ethical complaints from patients, families, health professionals, or health insurers against members of the professional staff. In this function, the ethics committee may serve a monitoring and conflict resolution role. When conflicts persist, final settlements may occur under the guidance of hospital administrators, in complaints to licensing boards, or through the legal system. Second, ethics committees serve as consultants to physicians or other professionals who are facing difficult ethical dilemmas. They provide professionals access to a forum in which they can present a situation and hear the various responses or positions in a supportive and confidential setting.

For example, a physician might present a dilemma regarding a patient to an ethics committee to gather information about how to proceed with treatment. The ability to solicit such advice without worry about violations of confidentiality is truly critical; therefore, ethics committees are conducted under a cloak of privacy. However, in this role, the ethics committee rarely offers the physician a clear resolution of the ethical dilemma. Rather, the consultation may be used to outline possible viewpoints and to define possible courses of action in a given situation. Clinicians may feel anxiety or disappointment when they realize that the ethics committee cannot just advise “what to do” in a given situation. The ultimate decision most often resides with the health professional or with the health care team.

Bioethical Decision Making

Bioethical decisions, particularly those involving the treatment of children with craniofacial anomalies, have a critical impact on health outcomes and on individual and family quality of life. Such decisions often raise questions that call for a distinction between what is “right” and what is “wrong.” In the conduct of clinical care, judgments about fairness, human duty, and personal morals are ethical decisions. These are not merely technical questions meant for experts in ethics; health professionals in clinical practice make these decisions on a regular basis (2, 3, 4).

In some respects, ethical issues in craniofacial care are particular instances of social and moral decisions that occur in the conduct of other human matters. For example, issues involving access to costly craniofacial services are merely a subset of issues that relate to how a society allocates scarce resources. Ethical debate will sometimes consider whether individual benefit should be maximized or whether the needs of the society at large should receive priority. In the conduct of ethical decision making, it may not be possible to reconcile fully the desires of individuals with the needs of the society at large.

Guiding Ethical Principles

Several ethical principles may influence the values expressed in craniofacial ethical decisions. Often ethical decisions involve the distinction between autonomy, beneficence, and non-maleficence. Issues of competence and justice are also worthy
of consideration. (These issues are also discussed in the context of cosmetic procedures in Chapter 18.)

Autonomy and Beneficence

Autonomy implies the ability of an individual to determine how he or she is to be treated by others. It means that a person can freely act to define the treatment, outcomes, and processes used in his or her health care. Autonomy implies the ability to make reasonable informed decisions in one’s self-interest. Beneficence is a principle by which professionals provide what they believe is best for another person. In the case of health care, a professional will judge what form of treatment is offered in a patient’s best interest. Sometimes the professional’s idea of the best course of treatment may differ from the patient’s or from the family’s. When this occurs, who decides on the final course of action? Issues of autonomy and beneficence arise frequently in communicating surgical treatment plans and in negotiating an agreed upon course of care. The professional’s sharing of information and the patient’s and family’s desires for information shape how the patient’s best interest will be defined.

Non-maleficence

Health professionals are often seen as being held to a principle of non-maleficence, or the expectation that they will do everything possible to avoid harm, as compared to creating good or well-being. In the surgical care of children with craniofacial anomalies, should the surgeon provide an operation to a patient just because the family or patient requests it? Should the surgeon only provide the patient with the treatment options the surgeon believes are optimal and withhold other possibilities? Should a surgeon who does not believe he or she can perform an operation without significant risk of harm refer the patient elsewhere? Should he or she explain her decision in doing so?

Competence

Another concept that affects clinical decision making is competence, which implies the legal ability to make health care decisions. Adults are assumed to be competent unless their legal decision-making rights have been granted to others, such as a legal guardian or one with the power of attorney. Adults who, because of limited intellectual capacity or other disabilities, are unable to engage in the informed consent process, may be considered incompetent to make their own health care decisions. Children or adolescents (below the age of 18) are not generally considered competent to make independent decisions without a guardian’s involvement. Thus, adolescents are asked to provide assent for treatment while parents or guardians ultimately provide informed consent. The principle of competence highlights the difference between the law and ethics. It may be legal for a professional to perform a procedure on a patient, but it may not be ethical to do so.

Justice

In bioethical decision making, justice involves three related concepts: treating people fairly; giving people what they deserve; and giving people what they are entitled to. These concepts are tied to distributive justice or approaches towards allocating resources in a society (4). In the case of craniofacial surgery, the costly nature of care and the relatively small number of professionals who offer it contribute to its perception as a scarce resource. Various allocation rationales may be proposed to
decide who receives craniofacial surgical care and who does not. Does the sickest person receive care first? Is care distributed on a first-come, first-served basis or is it given by merit?

It is also important to recall that, for most clinicians, this issue of justice is considered in the context of a given doctor-patient relationship. In contrast, on a public health or policy level, health professions are called upon to protect society and to act to maximize fairness. On occasion, the individual and societal goals may be at odds with one another.

SPECIFIC BIOETHICAL ISSUES IN CRANIOFACIAL CARE

The remainder of this chapter presents cases that are representative of ethical dilemmas that occur in the context of providing craniofacial services. The discussion that follows each case necessarily offers only a limited set of options and viewpoints. Nevertheless, they illuminate the mechanism of ethical discourse. The discussants are not formally trained ethicists; rather, they are thoughtful health professionals and social scientists with extensive clinical experience concerning the issues discussed. This resembles the reality of most ethics committees, few of which have formally educated biomedical ethicists and typically call upon members of the local community who may bring a fair and considered perspective to ethical discourse.

As noted earlier, solutions to these dilemmas are rarely, if ever, clear and definitive. However, thoughtful discussion and contemplation of these situations, which following the guidance of the ethical principles discussed above, can facilitate greater insight and sensitivity as craniofacial teams struggle to do what is in the best interests of their patients.

CASE EXAMPLES

Case 1: Robby—When Is Enough, Enough?

Robby is a 16-year-old boy with a history of unilateral complete cleft lip and palate. He plays basketball on his high school’s varsity team and plans to go to college after graduation. He has an obvious maxillary deficiency and lip and nose deformity that can be repaired with two surgical procedures that should optimally be done in the next 1 to 2 years. Robby’s parents have said that they want the best possible result for Robby because for him “the sky is the limit.” At this visit with the treatment team, Robby says, “enough is enough, I don’t want any more surgery. I don’t want to miss basketball practice and I am sick of doctors and hospitals.”

Is it the treatment team’s role to advocate for more surgery? What are the alternatives?

Robby has been presented the option of surgery that technically may be considered as elective, but is intended to correct an obvious lip and nose deformity often associated with social stigma, painful self-consciousness, and diminished self-esteem (the psychological effects of craniofacial conditions are reviewed in Chapter 5). The current standard of care suggests that the necessary corrective surgical procedures should be performed within 2 years or by the time he is 18. His parents understandably wish to do all they can to help their son put his best possible face to the world, literally and figuratively.

Robby presents an interesting and not unusual dilemma for those who work with adolescent candidates for craniofacial surgery. The central issues raised by this case include patient autonomy, adequately informed consent, and what Ward has termed
“partnership without coercion” (2, p. 8). These issues are closely intertwined with key features of adolescent development and related family dynamics that can challenge all participants in medical treatment during this stage of life (5,6). Before proceeding to discuss these issues it is helpful to consider briefly some salient features of adolescent development.

Sixteen-year-old Robby is in middle adolescence, a developmental stage that is characterized by more sophisticated mental reasoning. These abilities include improved perspective taking that makes it easier to place a specific issue within its broader context (“the big picture”) and an intensified quest for personal competence and mastery in daily life. In addition, because most adolescents have relatively little life experience to use as a reference, they tend to emphasize the present over the future. For many, adolescence also is marked by an emotional intensity that can be expressed in passionate commitment to personal beliefs and ideals that sometimes may cloud rational judgment. Thus, the teenager is often involved in a continuous dance between the personal and the public, the self and the community, self-focus and altruism (7, 8, 9, 10, 11).

The right of the patient to determine the nature and timing of his treatment is obviously a central issue in this case. But can the principle of patient autonomy exist in a vacuum? In other words, should the surgeon’s sense of duty to the patient’s long-term welfare be put aside in favor of Robby’s right to choose? Because Robby is not yet an adult, do his wishes need to be weighed against research-based medical opinion and the wishes of his parents, who, it may be assumed, know their child and his needs well and wish to protect his future? How do we reconcile the well-founded concerns of all involved?

One could argue that the principle of autonomy can be meaningful only when the patient is adequately informed about procedures and treatment outcomes. For the purpose of this example, let’s assume that his previous surgeries are consistent with the typical standard of care and are otherwise unremarkable. Nevertheless, we do not know how Robby has interpreted his treatment course and what meaning it has for him at this time. We may assume that he is a busy high school junior, who plays sports, is facing increasing academic demands, and is likely concerned about his social life as well. In this context, it may be realistic to conclude that time and timing with regard to his surgery are significant considerations for him.

It would be helpful to know more about Robby’s understanding of the proposed surgery and what it and his recovery will involve. Perhaps he has some unexpressed or even unrecognized worries about this procedure. Teenagers may be poorly informed, harbor misconceptions, be reluctant to ask potentially embarrassing questions, and, instead, may adopt an air of bravado so as not to appear vulnerable to others (8,11, 12, 13, 14). Therefore, it may be helpful if the surgeon first spends time talking with Robby alone, to explore, in greater depth, his concerns about surgery. This may provide an opportunity to address questions that he may have and is not comfortable addressing without explicit permission and support. Is Robby satisfied with his appearance at this point in time? If left to his own devices, how would he time his own surgery? What does he think might be the trade-offs were he to postpone surgery more than 2 years? How might he feel about his decision 5 years from how if postponement resulted in a less successful outcome? Such a discussion makes it possible for the surgeon to go beyond the potentially paternalistic definition of disclosure as to what the surgeon thinks Robby should know, enabling him to discover what Robby wants and needs to know. One might ask whether this more extended discussion is not only desirable but indispensable if, as in Great Britain, children between 16 and 18 are assumed to have the same degree of competence to consent as an adult (4, p. 7).

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