The Journal of Bone & Joint Surgery

The Journal of Bone & Joint Surgery, Volume 94, Issue 1

Ethics in Practice | January 04, 2012

Discussing Treatment Options with a Minor: The Conflicts Related to Autonomy, Beneficence, and Paternalism

James R. Ross, MD¹; James D. Capozzi, MD²; Matthew J. Matava, MD¹

¹ Department of Orthopaedic Surgery, Washington University, 14532 South Outer Forty Drive, Chesterfield, MO 63017. E-mail address for M.J. Matava: matavam@wudosis.wustl.edu
² Department of Orthopaedic Surgery, Winthrop University Hospital, 222 North Station Plaza, Mineola, NY 11501

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J Bone Joint Surg Am, 2012 Jan 04;94(1):e3 1-4. doi: 10.2106/JBJS.J.02007

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Abstract

A seventeen-year-old male, high-school football player presents to an orthopaedic surgeon because of recurrent right knee pain after having undergone an arthroscopic meniscal repair one year previously. The patient did well initially but now has recurrent medial joint-line pain in the knee, which developed when he planted the right leg to throw a pass during summer training camp. He was evaluated by the team's athletic trainer and by an orthopaedic surgeon, both of whom, on the basis of their physical examination of the boy, believe that he may have sustained a recurrent meniscal tear. A magnetic resonance arthrogram is acquired, which confirms the presence of a large longitudinal tear of the medial meniscus in the “red-red” zone, with no signs of degenerative change, articular cartilage damage, or other ligamentous pathology. The patient had just started summer training camp before his senior year of high-school football, and he is considered to be a potential high-level candidate for a Division-I football scholarship.

The orthopaedic surgeon presents the patient and his mother with three treatment options: nonoperative management, arthroscopic partial meniscectomy, and arthroscopic meniscal repair. He also presents the relevant risks and benefits of each choice, including, for meniscectomy, the risk of the future development of osteoarthritis if a large portion of the meniscus were to be excised and, for meniscal repair, the need for an extended (four to six-month) rehabilitation period. Both the patient and his mother are apprised of the limitations of preoperative magnetic resonance imaging (MRI) in determining if a meniscal tear can be repaired^1-3. The patient states that, on the basis of his symptoms of pain, intermittent locking, and swelling, he does not believe that he would be able to play football if nonoperative management was chosen. He voices a strong preference for meniscectomy, as this would allow him the most rapid return to play. He states that he is not concerned with the future risk of osteoarthritis but is fearful that missing his senior football season will place his scholarship in jeopardy. His mother states that her son would likely not attend college without a scholarship, considering the family's financial situation. The patient states that he therefore wishes to have a meniscectomy, given the likely quicker recovery and faster return to play.

The patient's mother was initially in favor of a meniscal repair, if possible. However, over the course of the patient's visit with the surgeon, she is persuaded by her son to favor a meniscectomy. The surgeon again discusses in detail the risks involved with meniscectomy in an adolescent—primarily the higher risk of future knee osteoarthritis. The patient remains persistent in his choice, mainly due to his desire to avoid the prolonged postoperative course of limited weight-bearing and physical therapy and thus the loss of his final high-school season. The mother, who is the patient's legal guardian for consent, ultimately follows her son's wishes and elects to consent to only an arthroscopic meniscectomy.

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Introduction

Introduction | Beneficence, Paternalism, and Autonomy | Consent, Assent, Dissent, and Parental Authority

The evolution of medical ethics over the past century has been marked by a shift in emphasis toward patient autonomy, rather than paternalism (i.e., an approach in which the physician acts solely on what he or she believes is best for the patient). This case raises a number of difficult ethical issues, including beneficence, the patient's right to decline treatment, perceived patient capacity to make an informed decision, parental authority, consent, and assent of minors. The central issue, however, involves patient autonomy versus paternalism. When do we decide that a patient is truly knowledgeable and able to make decisions on his or her own behalf?

The scenario presents a dilemma that is often faced in orthopaedic surgery—namely, a conflict between what the physician and patient believe is the best course of treatment. It is generally accepted that a physician's primary responsibility is to promote the good of the patient⁴. However, in the setting in which the patient does not agree with the recommendation and wishes to pursue a different treatment, the physician must be prepared to face the ethical issues at hand and educate the patient and his or her family during the decision-making process. The physician must have a clear understanding of the ethical and psychological issues involved, the patient's emotional and intellectual ability to make an informed decision (i.e., the patient's capacity), and the patient's rationale for his or her decision. Ultimately, the physician must incorporate the patient's wishes into an adequate treatment plan that is appropriate for the particular circumstance.

Beneficence, Paternalism, and Autonomy

Introduction | Beneficence, Paternalism, and Autonomy | Consent, Assent, Dissent, and Parental Authority

Beneficence encompasses the physician's obligation to act for the good of the patient. Whether discussing a surgical procedure or a specific medical treatment, the physician is ultimately obligated to present the best options based on the inherent risks and benefits that are imposed on the patient. Paternalism, on the other hand, has been historically described as a decision to act for a patient's good without regard for the patient's conception of what would be good in the given situation. These concepts are both considerably different from the principle of autonomy, where the treating physician is directed to make a decision on the basis of a patient's personal choice. Autonomy, however, does not necessarily mean that a patient has unlimited rights to demand a specific treatment, especially when it is deemed inappropriate or contrary to accepted medical practice. Instead, it allows patients the right to decline any treatment that a physician recommends.

It is evident in the case presented above that the principles of paternalism and autonomy conflict. The orthopaedic surgeon understands the long-term risk of a complete or near-complete meniscectomy in an adolescent—mainly, the risk of the development of knee osteoarthritis. He presented the patient with the option to have a meniscal repair to protect the articular cartilage surfaces from future damage. Clearly, the surgeon is unable to guarantee that a second attempt at repair will be successful even with a technically flawless surgical procedure and a compliant patient, given the reported success rates of isolated meniscal repairs^5-7. Furthermore, the surgeon cannot guarantee that a meniscal repair will definitely prevent the development of future osteoarthritis. Alternatively, he cannot state with any degree of certainty that the patient will definitely develop osteoarthritis if a meniscectomy is performed, despite the present understanding of meniscal function^8-12 and clinical results of meniscectomy in younger patients¹³. The patient in this case had already experienced the lengthy recovery period associated with a meniscal repair and is considering other factors that influence and ultimately guide his wishes. To the patient's way of thinking, he cannot afford to miss another football season, as his future education would potentially be placed at risk. The physician must be aware that a patient's rejection of the proposed treatment could be based on any number of personal factors, such as past experiences of themselves, their friends, and/or their family; religious conviction; fear; or simply a different view of their own best interest.

The principle of paternalism would direct the physician to attempt a meniscal repair, irrespective of the social factors involved with the patient's future, if the tear satisfied the accepted criteria for repair—that is, a tear of at least 10 mm in length that is located in either the “red-red” or “red-white” zone and that is unstable to probing with little associated damage⁷. Nevertheless, beneficence and respect for the patient's autonomy would direct the physician to honor the patient's decision. In the past, many physicians acted primarily out of paternalism, and in some cultures this may continue to be the case. In this era of modern medical ethics, many believe that a competent patient's denial of any therapy or treatment must be respected. The assessment of capacity can be difficult at times, especially when a physician is in disagreement with a patient's own desire. One can imagine the case in which a physician considers a patient “incapable” of making a decision if he or she declines to follow medical advice. Capacity, however, implies the ability to understand the situation at hand and the consequences of different treatment options. It also encompasses the ability to think rationally, as well as the ability to assess the various options and how they relate to the desired outcome. It is now widely believed that when autonomy and paternalism conflict, beneficence and respect for autonomy should override paternalism. The patient's rejection should be accepted even if the physician believes that the rejection is clearly not the best medical option for the patient. It is difficult for us, as physicians, to place ourselves in our patient's shoes. Is it acceptable for us to say what is better for the patient as a whole? What if the patient in the case is unable to go to college and is unable to obtain a job? We may lack the insight that the patient has about his or her future in the making of this decision. The patient may, in fact, have more capacity that we think, in that he or she may be considering the future more than we may perceive.

While acting in the best interest of the patient, we must also abide by the guideline of nonmaleficence, or “do no harm.” Physicians have this ethical obligation not only to the patient, but also to themselves. This concept forbids physicians from providing ineffective therapies or from acting selfishly or maliciously^14,15. This statement, however, conflicts with beneficial interventions such as surgery because there are inherent risks associated with surgical procedures. Perhaps a better definition in this setting would be to avoid the causation of harm. When the patient makes a decision about his or her health care, the harm should not be disproportionate to the benefits of treatment. If the physician in the case truly thought that he or she was harming the patient by performing a meniscectomy, it would be the duty of that physician to express this concern to the patient and encourage a second opinion. According to Berg et al., “When the patient's and physician's values are sharply at variance, the physician should decline to enter the relationship or withdraw from it graciously, with candor, and without recrimination¹⁶.”

Consent, Assent, Dissent, and Parental Authority

Introduction | Beneficence, Paternalism, and Autonomy | Consent, Assent, Dissent, and Parental Authority

The notion of informed consent is to allow physicians the opportunity to fully provide accurate information to patients for them to make a well thought-out decision. Informed consent can only be given by a patient who displays appropriate decision-making capacity. In all other situations, parents or other surrogates must grant informed permission. Should this occur in the setting of a minor, as in the case above, one must attempt to also obtain assent of the child whenever possible.

Experts in the field of informed consent emphasize the need to incorporate the following four elements in any discussion to obtain consent¹⁶: (1) provision of information—patients should display an understanding of the condition at hand, the nature of the proposed treatment along with its risks, and, finally, any existing alternative treatments and their associated risks and benefits; (2) assessment of the patient's understanding of the above; (3) assessment of the capacity of the patient or surrogate to make the necessary decision; and (4) assurance that the patient has the freedom to choose among the medical alternatives without coercion or manipulation.

The goal of the consent process should not simply be to rehearse a list of generic risks and benefits, but rather to develop the patient's comprehensive understanding of the clinical situation at hand. Doing so would allow a patient to truly make an educated decision about his or her medical care. According to Pellegrino and Thomasma¹⁷, “the physician is obligated to present clinical data as free as possible of personal or professional bias.” They further emphasize the avoidance of manipulation, coercion, and deception when obtaining consent. We must not undermine patient autonomy by presenting and emphasizing only the relevant points that we believe will make the patient and family choose the treatment option that we believe to be best. During the consent process, the physician must also distinguish what is known from what is uncertain. The patient should be allowed the ability to weigh the benefits and burdens, given that the patient is truly the only one who knows his or her own good. The consent process is a shared decision, occasionally requiring multiple discussions between the physician and the patient. The physician must encourage the patient to play an active role in decisions, ensure that patients are informed, protect the patient's best interest, and dissuade patients from choices that are clearly contrary to their best interest¹⁸.

When the patient is a minor, a surrogate decision-maker—typically a parent—must speak for the child. This right to consent for his or her child is well recognized in custom and in law. Some refer to this ability to make decisions on behalf of one's child as parental autonomy; however, this expression is misleading, as a parent should not have a sense of “self-rule” over his or her child. Parental authority, on the other hand, is a better description of the parent's right and role in the decision-making process. This implies that a choice among the parents and their child should be mutual, irrespective of how the parents ultimately voice the decision. By soliciting parental permission for informed consent, physicians are respecting this authority. It is critical to involve the parents as they are the most knowledgeable about the minor's ability to understand and to reason and can relate this information to the physician.

Health-care decisions that involve older children and adolescents, such as presented in the case example, should include, to the greatest extent feasible, the assent of the patient in addition to the participation of the parents and the physician. Older children should be seen as rational, autonomous decision-makers. Review of the limited relevant empirical data suggests that adolescents, especially those who are fourteen years of age or older, may have skills that are as developed as adults for making informed health-care decisions¹⁹. Children should also be involved in discussions about their health care, even in situations in which medical care is deemed medically necessary²⁰. By involving the patient, the physician fosters trust as well as a better physician-patient relationship. Seeking assent from the patient recognizes the dignity and moral status of the child. However, we must also recognize that cultural differences can exist when involving a child in the decision-making process. The idea of an individual as independent and capable of making decisions is not always accepted across various cultural groups²⁰. If assent is sought out, we must not only tell the patient what should be expected, but we should also assess the patient's understanding and solicit his or her willingness to accept the proposed care and its inherent risk. Input from the parents can be helpful in determining whether or not the child is emotionally mature enough to understand and be a part of the decision-making process.

The adolescent in this case displayed insight and demonstrated a clear understanding of the diagnosis and the proposed treatment. It may be argued that his selection of a meniscectomy was motivated by the short-term gain of a quicker return to play and possibly a college scholarship rather than the long-term risk of osteoarthritis. As physicians, we are faced with a dilemma in this circumstance. This discussion of short-term and long-term risks is very complex and may occur in many individual decisions. We understand that a meniscectomy in a young patient would almost certainly lead to early onset arthritis, and we have a responsibility to attempt to prevent this occurrence. To the physician's way of thinking, the patient may not show a clear understanding despite the physician's best efforts at outlining these risks, as the patient is focused on the present and the wish to return to football. Should we fault the patient for this desire? It is plausible that a meniscal repair would keep him from playing in his senior year, which could result in an inability to obtain a college scholarship and a postsecondary education. We should respect the wishes of the patients who dissent (refusal of assent) in order to gain a better understanding of their reasoning. Our focus on obtaining assent should include the following²¹: (1) help the patient achieve a developmentally appropriate awareness of the nature of the condition, (2) inform the patient what he or she can expect with various tests and treatments, (3) clinically assess the patient's understanding of the situation and factors influencing how he or she is responding, and (4) solicit an expression of the patient's willingness to accept the proposed care without coercion or deception.

By following these guidelines, we fulfill our ethical obligation to respect the patient while fulfilling the major functions of informed consent, which are the promotion of autonomy and the protection of the well-being of the individual. If there is evidence that a minor has sufficient knowledge and shows an intelligent understanding of the medical condition and its treatment, the dissent should be taken seriously¹⁹. During this process, however, the physician must determine how the minor views the condition and the proposed treatment. By doing so, we are able to recognize and correct any misconceptions that may hinder patient care. Physicians must overcome their natural inclination toward paternalism. It is difficult for the treating physician when a patient, who lacks the physician's knowledge and experience in the medical field, does not agree with the proposed treatment plan. Nevertheless, autonomous patients have a right to deny a specific treatment irrespective of the assumed risks. They are, in fact, the ones who know best how a mode of treatment will affect their life. The physician's goal should be to foster an environment in which the minor sees the physician as an ally for his or her well-being, which will ultimately help promote trust in the medical field.

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Disclosure: None of the authors received payments or services, either directly or indirectly (i.e., via his or her institution), from a third party in support of any aspect of this work. One or more of the authors, or his or her institution, has had a financial relationship, in the thirty-six months prior to submission of this work, with an entity in the biomedical arena that could be perceived to influence or have the potential to influence what is written in this work. No author has had any other relationships, or has engaged in any other activities, that could be perceived to influence or have the potential to influence what is written in this work. The complete Disclosures of Potential Conflicts of Interest submitted by authors are always provided with the online version of the article.

Topics

beneficence ; autonomy ; paternalism

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James R. Ross, James D. Capozzi, Matthew J. Matava; Discussing Treatment Options with a Minor: The Conflicts Related to Autonomy, Beneficence, and Paternalism. The Journal of Bone & Joint Surgery. 2012 Jan;94(1):e3 1-4.

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