Billy Best was diagnosed with Hodgkin lymphoma in 1994 at age 16 and became well-known when he ran away from home to avoid receiving further chemotherapy. His story became national news when, with the support of his adopted parents, he returned home and opted to use complementary and alternative medicine (CAM) instead of standard chemotherapy and radiation for his cancer treatment. Now 25 years since Billy Best entered the public eye, his story is one that is frequently referenced in pediatrics, bioethics, and other related fields. Here, the authors examine the evolution of various features of this case, including treatment of Hodgkin lymphoma, the interplay between medicine and the media, the role of CAM in pediatric care, navigating entrenched disagreements and how best to integrate adolescents into health care decision-making, and the role of narrative in medical practice. The authors explore the unique role of each of these facets of Billy Best’s case, describing how each has or has not changed in the quarter century since that time amid the changing landscape of pediatric health care. Ultimately, although many advances have occurred since Billy Best’s time, significant work remains. Additional effort will be required in the future to optimize communication, improve treatment toxicities from Hodgkin lymphoma without decreasing survival, integrate the voice and perspective of adolescents into their treatment decisions, and navigate the roles of CAM and the media in pediatric health care.
Dear Mom and Dad,
By the time you read this note I will be gone. The reason I left is because I could not stand going to the hospital anymore. I feel like the medicine is killing me instead of curing me. This is not a last-minute decision. I have wanted to leave ever since I was diagnosed. I wish I could do this without hurting you. Please forgive me. I love you all very much. I am in God’s hands now.
Love Always, Billy1
Introduction
During the summer of 1994, 16-year-old Billy Best developed progressive fatigue and a lump on his neck. He was ultimately diagnosed with Hodgkin lymphoma, a highly curable cancer of the lymphatic system,2 and his clinical team recommended chemotherapy, splenectomy, and radiation, the standard of care at that time. He began chemotherapy in August and his cancer responded well to treatment, although Billy experienced several common treatment-related toxicities that he found distressing, including, nausea, jaw pain, fatigue, and hair loss.3,4 Ultimately, Billy became a national news story when, to avoid additional chemotherapy, he ran away from his home in Massachusetts to Texas after completing his first 2 months of treatment.3–5 Through the media, his adoptive parents stated that if he returned home, they would not insist he receive further chemotherapy, and in November he returned home.4,5
Billy received an outpouring of advice and support from around the country. He and his family ultimately decided to treat his lymphoma with dietary changes and alternative therapies, rather than the chemotherapy and radiation recommended by his clinicians.6 Although Billy’s parents preferred he undergo chemotherapy and radiation, they reluctantly supported his choice, expressing concern he would run away again if they did not.7 His case was referred to protective services but never went to court. A national news sensation, Billy advocated for young patients with cancer and alternative treatments, presenting national lectures and authoring a book about his experience.1
Now, 25 years since his treatment refusal and runaway, we re-examine the story and legacy of Billy Best. To the best of our knowledge, his cancer remains in remission, despite receiving what was then believed to be less than the standard of care. In the ensuing years, there have been numerous advances in Hodgkin lymphoma treatment, and there is now greater (yet still rather limited) understanding of and receptivity to complementary and alternative medicine (CAM). Furthermore, Billy’s refusal of recommended treatment demonstrates the complexity of adolescent decision-making and pediatric bioethics, areas that have evolved greatly in intervening years. Finally, although Billy’s case was not the first to feature prominently in the national media, the press played an important role in his story, an influence that has only grown in today’s era of social media. In this article, we explore key issues raised by the Billy Best case and examine how these issues have evolved, situating the case historically (Fig 1). Billy’s case remains relevant today; here, we provide context regarding how these features and practices have (or have not) changed in the 25 years since Billy was diagnosed and provide a path forward.
Timeline of important events in pediatric ethics, media and technology, and Billy Best’s case.
Timeline of important events in pediatric ethics, media and technology, and Billy Best’s case.
Hodgkin's Lymphoma
Hodgkin lymphoma, a cancer of the lymphatic system seen most commonly in adolescents and young adults (age 15–398 ), is a success story in modern oncology. It was among the first advanced malignancies in children or adults to be cured with chemotherapy,9 and, since the 1970s, advances have achieved impressive rates of cure and decreased toxicity.2,10 Today, chemotherapy with or without radiation (depending on chemotherapy response) is the standard treatment, with ongoing efforts to minimize long-term toxicities while maintaining high rates of cure.2 In 1994, when Billy was diagnosed, a common chemotherapy regimen used was adriamycin, bleomycin, vinblastine, and dacarbazine (ABVD), administered for 6 to 8 monthly cycles, and removal of the spleen, followed by radiotherapy. This regimen was associated with an ∼80% overall survival rate and the safest toxicity profile of regimens available at that time.11,12 It is difficult to know with certainty about Billy’s disease stage and the treatment plan recommended to him, but it appears that he had low-stage lymphoma, with a recommended plan for ABVD with radiation, which Billy confirms in his autobiography.1
The intensive regimens of chemotherapy and radiation used for Hodgkin lymphoma are associated with a risk of long-term sequelae, including secondary cancers, cardiovascular disease, and other chronic conditions.13–15 Since Billy diagnosis, Hodgkin lymphoma clinical trials have aimed to maintain and improve survival rates (now approaching 95% for adolescents and young adults16 ) while minimizing short- and long-term toxicities. Today, regimens particularly aim to avoid infertility (seen in 90% to 100% with early regimens but much more rarely today17 ) and secondary cancers (seen in 5% to 10% of Hodgkin survivors, significantly less than previously18 ), although short-term toxicities like neutropenia (30% to 55%), alopecia (25% to 35%), and nausea and vomiting (5% to 15%) remain common.19 Most advances have identified who can effectively receive fewer (and/or less toxic) cycles of chemotherapy and radiation. Today, treatment regimens for Hodgkin lymphoma vary, and ABVD remains common.2,10,20 Interestingly, if Billy were diagnosed today with low-stage Hodgkin's lymphoma and demonstrated a rapid, complete response to upfront chemotherapy, it is conceivable that, by current standards, he would be prescribed only the treatments that he ultimately received before running away.2,20,21 Work is ongoing to identify how best to integrate patient preferences into Hodgkin lymphoma treatment plans.22,23
Medicine and the Media
When Billy’s case became national news, television was the main broadcast medium. The Internet was in its infancy, with Google and Facebook not available until 1998 and 2004, respectively, and social media platforms like Twitter and Instagram not launching until 2006 and 2010, respectively (Fig 1).
Media coverage played an important role in Billy’s illness experience and decision-making. In his autobiography, he describes his mother telling him, “People are sending us letters and we’re getting phone call after phone call from everyone who has seen the story.”1 Billy’s visibility in the media had a unique impact on his clinical course (including informing his dietary changes and use of alternative therapies, described further below) through his interface with the public in ways rarely seen before then but witnessed much more frequently today given widespread availability of Internet and social media.
Billy’s case in many ways signaled the beginning of a new era. In subsequent years, the explosion of the Internet and social media amplified information available for families when considering health care decisions. Social media has the capacity to be a forum where patients and families can seek information, support, and advice, but it can also fuel polarized narratives that distort facts and create an additional stakeholder in already complex situations: public opinion, potentially at the detriment of the patient in question. Unfortunately, such discourse can shine light on, or even magnify, distrust between parents/patients and clinicians, as in recent years regarding such controversial topics as vaccine hesitancy. Research demonstrates that vaccine-hesitant parents distrust physicians and other sources of scientific authority and seek information about vaccines from the Internet.24–26 One study reported that information about vaccination on Twitter flows between users who share similar sentiments, creating an “echo chamber” of opinions that can impact medical decisions.24 The coronavirus pandemic has further reinforced the role of social media as a space that can generate public health misconceptions but can also assist in mitigating isolation and create positive public health campaigns.27–29 Overall, social media (and media more generally) can serve patients and families in finding spaces of solidarity, reprieve, and healing when suffering, but it can also lead to polarized and emotive discourse that exacerbates patient-parent-provider friction and distrust and can promote misinformation or disinformation,30,31 as was the case with Billy. It is impossible to know whether Billy would have opted for alternative therapies in absence of the media’s involvement, but it clearly facilitated his access to inaccurate information, further described below.
Complementary and Alternative Medicine
The integration of CAM is one of the most controversial aspects of the Billy Best case. Billy received recommendations from well-wishers around the country, some of whom encouraged him to try alternative treatments such as Essiac tea and 714-X.1 In his book, Billy states that Essiac, a proprietary herbal tea blend, is a Native American remedy, but this report has not been substantiated.1,32 714-X is a product derived from camphor that was developed in the 1970s and is directly injected into the lymph nodes for its purported immunomodulatory purposes.33,34 By his report, Billy embraced Essiac tea and 714-X, along with dietary modifications and supplements, for at least 6 months. He attributes the fact that his lymphoma did not return to this regimen, some of which is available for purchase from his personal Web site.35
Two years before Billy’s diagnosis, in 1992, Congress allocated $2 million to establish the Office of Unconventional Therapies (later renamed the Office of Alternative Medicine) to establish a fundamental knowledge base about CAM therapies.36 Congress then passed the Dietary Supplement Health and Education Act in 1994, stating that supplements should be regulated in the same fashion as foods; over the next few years, the National Institutes of Health organized and funded several study groups, workshops, and trials to examine the role of CAM in health care. In 1998, Office of Alternative Medicine was expanded into the National Center for Complementary and Alternative Medicine (now the National Center for Complementary and Integrative Health). In 2020, the National Center for Complementary and Integrative Health received $152 million in funding.37
Today, the role of CAM remains controversial, particularly when it replaces conventional medicine (ie, “alternative medicine”). Studies report that ∼40% of patients with cancer use CAM at some point during their cancer trajectory, with significant international variability and an increase in use over time.38,39 In a recent Canadian study, 60% of parents of children with cancer reported having used CAM products and/or practices during their child’s treatment, most commonly including complementary therapies such as vitamins and supplements, faith healing, and massage.40 Importantly, 20% to 30% of those incorporating CAM do not consult with or disclose its use to their clinical team, often at least in part because they were not asked about their CAM usage.39,40 Among adults with curable cancers, CAM usage is associated with refusal of conventional cancer treatments and with increased risk of death, although underlying causes for this are unclear.41 Consequently, recent efforts have stressed the importance of open communication with patients and families about this complex topic.42,43 Currently, limited data are available about the efficacy of most alternative medicine products in cancer care. The vast majority of those that have been studied in randomized controlled trials have not examined a disease-related outcome (eg, survival or tumor response), and most are not supported by a previous early phase trial.44 Notably, no controlled data are available regarding Essiac or 714-X in cancer,32,33 and the United States Food and Drug Administration now prohibits importation of 714-X.16
Adolescent Decision-Making
Billy’s legal decision-making role as a minor was limited, but he still actively engaged in his treatment decision-making process. His parents and clinical team, for example, supported his request to delay initial treatment by 2 weeks so he could better adjust to his diagnosis and enjoy the summer “like other normal kids.”1 Similarly, Billy’s request not to undergo splenectomy (which, interestingly, is no longer standard treatment of Hodgkin lymphoma10 ) was honored.1 Importantly, however, given his status as a minor, Billy’s parents were the ultimate legal decision-makers regarding his care. They initially encouraged Billy to proceed with chemotherapy as recommended and only acquiesced to his refusal of further chemotherapy after he ran away and refused to return if they insisted he receive more.1,7
In 1994, conversations about adolescents’ decision-making roles were in their relative infancy. The 1976 American Academy of Pediatrics (AAP) statement on consent and pediatric decision-making that was then available only briefly mentioned minors’ roles in decisions.45 The subsequent revision of this document, published in Pediatrics in February 1995 during Billy’s time in the spotlight, addressed the importance of including pediatric patients in health care decision-making, in an age- and developmentally appropriate fashion,46 although limited practical advice was provided about how to achieve this. The latest (2016) iteration of this AAP statement has a much greater focus on the importance of obtaining assent or dissent of adolescents, highlights complexities of adolescent cognitive neurodevelopment,47,48 and even explicitly addresses adolescent refusal of potentially life-saving interventions, like chemotherapy for Billy.47
Even now, 25 years later, how best to meaningfully integrate the voice and perspective of adolescents into health care decision-making remains elusive, with this challenge explicitly acknowledged by the AAP statement’s authors.47 Although adolescents like Billy have a well-documented desire to be included in their health care decisions, they are often excluded from conversations with clinicians and parents, particularly when considering treatment decisions about their cancer.49–51 Moreover, adolescents are rarely asked about their preferences and values in these conversations.49 This is concerning given data suggesting adolescent end-of-life perspectives are frequently incongruent with what adolescents’ parents believe them to be,52 including those regarding life-sustaining treatments and death. Many states now have legal provisions allowing adolescents to provide consent for certain health care services without parental permission, including those regarding testing and treatment of sexually transmitted infections, mental health, and contraception services.47,53 Recently, several jurisdictions have passed legislation allowing adolescents to provide consent for other health care services without parental permission, such as vaccinations.54 Furthermore, emancipated minors, who are legally independent from their parents, can make medical decisions without parental consent, and mature minor provisions allow minors in some jurisdictions to petition the court to recognize that they adequately understand their treatment options and potential consequences of their decisions and should, therefore, be permitted to make select treatment decisions independently.47,53 There appears to be a gradual shift underway, moving toward an increased role for adolescents in their health care decisions. Although it is unclear whether and how today’s standards might have influenced the process and outcome of Billy’s dilemma were they in place in 1994, several similar cases in the years since (discussed further below) illustrate how the role of adolescents has evolved, particularly in the context of entrenched disagreements.
Navigating Entrenched Disagreements
In Billy Best’s case, the primary conflicts focused on his refusal of further chemotherapy and desire to proceed with CAM. As a minor, Billy did not hold legal authority to refuse treatment, and it is unclear what would have happened if he continued to refuse chemotherapy but his parents wished to pursue it. Ultimately, however, because Billy’s parents supported his treatment refusal after he ran away,1 the question became one of entrenched disagreement between his parents (those with legal authority to make decisions on Billy’s behalf) and the clinical team. As might be expected, Billy’s clinical team was distressed with the Bests’ decision, and they made a referral to the Department of Child and Family Services. The case did not, however, ultimately go to court.1
Conversations between the Best family and clinicians likely centered on the question of what was in Billy’s best interests. In the ensuing 25 years, tools and approaches for navigating entrenched disagreements have evolved, particularly those considering whether and when to involve the court when parents refuse recommended treatments (Table 1).55–59 Courts have traditionally focused on maximizing the best interests of the minor, a principle for pediatric decision-making which was further popularized by Buchanan and Brock in their seminal text in 1989.60 Further explicated by Kopelman in 1997, the best interests standard can act as an ideal, a standard of reasonableness between competing interests, and/or a threshold standard to prevent abuse and neglect.55 Since Billy was treated, several additional frameworks have been developed for considering entrenched disagreements (Fig 1). Ross’s constrained parental autonomy model (1998) posits that parents can make decisions that do not necessarily optimize a minor’s best interests to preserve interests of the family unit, insofar as this decision does not violate the child’s basic interests.57 In 2004, Diekema proposed the harm principle, which focuses on avoidance of severe harm, rather than maximization of benefit, as the primary driver in deciding whether to override parental decisions.56 The zone of parental discretion, described by Gillam in 2016, aims to further elucidate and operationalize the harm principle through clearly delineated steps,58 and Mercurio’s I-P-O framework (2020) considers treatments according to an impermissible-permissible-obligatory spectrum.61 The development and dissemination of these frameworks since Billy’s time reflect a growing interest in considering both harms and benefits, the minor’s role in the family, the family’s values and preferences, and other factors when considering such a conflict.
Examples of Pediatric Decision-Making Frameworks and Their Application to the Case of Billy Best
| Framework | Description | Application to the Case |
|---|---|---|
| Best interests standard55,60 | A tool that considers the highest net interest among the available options. Viewed as an ideal, a standard of reasonableness among multiple competing interests, and as a threshold for intervention in cases of child abuse and neglect. | In Billy’s case, definitions of interests vary and may extend beyond clinical best interests. For example, his interests might consider his views and experiences on continuing with chemotherapy rather than pursuing alternative approaches. His parents’ view of his best interest might prioritize his safety and the intervention that would prevent him from running away. |
| Harm principle56 | A tool that identifies the threshold of state intervention to be at the point of serious harm to the child because of parental refusal of treatment. Parental choices need not be in the child’s best interests so long as they do not surpass a threshold of harm. | In Billy’s case, the ultimate question is whether potential harm of not receiving further chemotherapy (and potentially receiving CAM instead) justifies state intervention. Conditions determining this include risk and imminence of harm, expected efficacy of the recommended treatment at preventing that harm, consideration of alternative options, and ultimately whether allowing Billy to forego further chemotherapy poses an unacceptable risk of harm. |
| Zone of parental discretion58 | A tool that aims to operationalize the harm principle when parents and physicians disagree about treatment. Delineates “ethically protected space” wherein parents legitimately make decisions on behalf of children that may not be deemed best but are “good enough” and above the threshold of harm. | In Billy’s case, although standard chemotherapy might be considered to be in his best interest, the zone of parental discretion’s stepwise approach might conclude that Billy’s parents’ decision to pursue complementary medicine (and forego further chemotherapy/radiation) is less harmful overall than having Billy run away. |
| Constrained parental autonomy57 | A tool that allows parents to have the discretionary power to make intrafamilial trade-offs and decisions to account for the interests of other family members as long as the child’s basic interests are met. Considers the family as a valuable social institution of child-rearing and self-fulfillment. | In Billy’s case, intrafamilial trade-offs might lead to Billy’s parents supporting his refusal of chemotherapy in exchange for staying with his family and not running away. Similar to the zone of parental discretion rationale, his parent’s have the authority to make a choice that might not be in his best interests but accounts for their own and their family’s interests. |
| IPO framework61 | A tool that supports shared decision-making between parents and clinicians by placing treatments being considered by the clinical team on the IPO spectrum. | In Billy’s case, the treatments being considered (ie, chemotherapy and CAM) should each be categorized on the IPO spectrum. Those deemed impermissible should not be offered, those permissible should be discussed with parents, and those deemed obligatory should be given, even over parental objections. |
| Framework | Description | Application to the Case |
|---|---|---|
| Best interests standard55,60 | A tool that considers the highest net interest among the available options. Viewed as an ideal, a standard of reasonableness among multiple competing interests, and as a threshold for intervention in cases of child abuse and neglect. | In Billy’s case, definitions of interests vary and may extend beyond clinical best interests. For example, his interests might consider his views and experiences on continuing with chemotherapy rather than pursuing alternative approaches. His parents’ view of his best interest might prioritize his safety and the intervention that would prevent him from running away. |
| Harm principle56 | A tool that identifies the threshold of state intervention to be at the point of serious harm to the child because of parental refusal of treatment. Parental choices need not be in the child’s best interests so long as they do not surpass a threshold of harm. | In Billy’s case, the ultimate question is whether potential harm of not receiving further chemotherapy (and potentially receiving CAM instead) justifies state intervention. Conditions determining this include risk and imminence of harm, expected efficacy of the recommended treatment at preventing that harm, consideration of alternative options, and ultimately whether allowing Billy to forego further chemotherapy poses an unacceptable risk of harm. |
| Zone of parental discretion58 | A tool that aims to operationalize the harm principle when parents and physicians disagree about treatment. Delineates “ethically protected space” wherein parents legitimately make decisions on behalf of children that may not be deemed best but are “good enough” and above the threshold of harm. | In Billy’s case, although standard chemotherapy might be considered to be in his best interest, the zone of parental discretion’s stepwise approach might conclude that Billy’s parents’ decision to pursue complementary medicine (and forego further chemotherapy/radiation) is less harmful overall than having Billy run away. |
| Constrained parental autonomy57 | A tool that allows parents to have the discretionary power to make intrafamilial trade-offs and decisions to account for the interests of other family members as long as the child’s basic interests are met. Considers the family as a valuable social institution of child-rearing and self-fulfillment. | In Billy’s case, intrafamilial trade-offs might lead to Billy’s parents supporting his refusal of chemotherapy in exchange for staying with his family and not running away. Similar to the zone of parental discretion rationale, his parent’s have the authority to make a choice that might not be in his best interests but accounts for their own and their family’s interests. |
| IPO framework61 | A tool that supports shared decision-making between parents and clinicians by placing treatments being considered by the clinical team on the IPO spectrum. | In Billy’s case, the treatments being considered (ie, chemotherapy and CAM) should each be categorized on the IPO spectrum. Those deemed impermissible should not be offered, those permissible should be discussed with parents, and those deemed obligatory should be given, even over parental objections. |
IPO, impermissible-permissible-obligatory.
There have been similar recent cases that have made national news yet have proceeded differently. In 2006, the case of Abraham Cherrix, a 15-year-old who refused standard Hodgkin lymphoma treatment in favor of CAM62 culminated in “Abraham’s Law” in Virginia, granting teenagers (≥14 years old) the right to refuse medical treatments under a defined set of circumstances.63 Abraham is still alive today (although his lymphoma relapsed and he ultimately received conventional therapy), but some question the acceptability of allowing a teenager to refuse life-saving therapy, even when meeting the criteria set forth in the Virginia law.47,64–66 Cassandra Callendar was similarly diagnosed with Hodgkin lymphoma in 2014 at age 17 and became entrenched in a lengthy legal battle after she and her mother refused recommended treatment.67,68 The Connecticut Supreme Court ruled that Cassandra did not meet the standards set forth by mature minor statutes and could not legally refuse treatment. Cassandra was obligated to receive chemotherapy over her and her mother’s objections until she turned 18. At that point, she refused further treatment, spending the next several years intermittently receiving various combinations of CAM and conventional treatments until she died of recurrent, progressive lymphoma in May 2020.67,68 Although fundamentally similar to Billy’s (all had Hodgkin lymphoma with similar prognoses, were of similar age, and refused conventional treatment in favor of CAM after initial chemotherapy cycle[s]), these cases demonstrate significant heterogeneity in their management and ultimate outcome, highlighting both evolution in thinking and continued room for improvement regarding navigating adolescent decision-making and entrenched disagreements in pediatrics.
Narrative Ethics and Shared Decision-Making
Various ethical frameworks are available for assistance in approaching ethically complex cases like Billy’s. We introduce several of these approaches (principlism, virtue ethics, feministic ethics, casuistry, and narrative ethics) and their potential application to Billy’s case in Table 2.69–74 We find the narrative approach to be especially rich and instructive. Today, we have the benefit of Billy’s autobiography, which, quite literally, shares his narrative to ground our analysis.1 It is important, however, to acknowledge that the autobiography was published in 2012, when Best was an adult, retrospectively reporting about his adolescent experiences with cancer, and it is impossible to know the influence of the writer who assisted in telling his story. Nevertheless, the autobiography is a useful resource insofar as it provides great detail and access to Billy’s retrospective accounting of his story.
Common Bioethical Approaches and Their Application to the Case of Billy Best
| Approach | Description | Application to the Case |
|---|---|---|
| Principlism70 | Focuses on fundamental ethical principles (such as autonomy, beneficence, nonmaleficence, justice) that provide a framework to inform ethical decision-making.2 | In Billy’s case, clinicians recommended chemotherapy for Billy in attempt to cure his lymphoma (beneficence). Billy and his parents, in contrast, felt that chemotherapy was causing him undue harm, so they wished to proceed with CAM in place of chemotherapy (nonmaleficence, autonomy). |
| Virtue ethics70,72 | Focuses on whether an individual or action is considered “good” (virtuous) according to their alignment with virtues such as compassion, respect, honesty, and advocacy. | In Billy’s case, virtue ethics reflects the character traits and manner of clinicians when caring for Billy during treatment, advocating for Billy and his family’s changing interests, and respect for Billy and his family’s health care choices. A core conflict existed between the clinicians’ virtuous intent to safely treat Billy’s cancer with chemotherapy and radiation and Billy’s interest in protecting himself and treating his cancer with complementary and alternative medicine. |
| Feminist ethics73 | Focuses on structural limitations in the ethical dilemma, including inequities and disparities according to such features as race, age, sex, sexuality, and socioeconomic status. | In Billy’s case, his Native American heritage influenced his decision-making, informing his interest in “natural” treatments. Indigenous persons, however, have a history of discrimination and mistrust in the medical system, in part because of a devaluation of traditional healing and medicine.74 In addition, Billy’s status as an adolescent acted as a barrier to him taking a full role in decision-making about his treatment, reflecting long-standing sociocultural and legal limitations placed on the authority of minors. |
| Case-based (casuistry)69 | Focuses on previous cases as a precedent for notions of what is good/right and how best to proceed in a given case. | In Billy’s case, there was little precedent for determining the optimal response when he ran away, although his case has certainly influenced management of other similar cases in the decades following. Billy himself, however, could have been influenced by previous patients with cancer who used alternative medicine, and by his aunt, who died of treatment-related toxicities while receiving chemotherapy for breast cancer. |
| Narrative ethics71 | Focuses on personal identity, meaning, and moral decision-making through the understanding of unfolding stories. | In Billy’s case, his autobiography provides a post hoc narrative of how he wanted the public to view his experiences and decision-making trajectory. Elements of narrative can also be found in press reports from Billy, his parents, and his clinicians, as well as those who provided Billy with anecdotes of their own experiences with alternative medicine. |
| Approach | Description | Application to the Case |
|---|---|---|
| Principlism70 | Focuses on fundamental ethical principles (such as autonomy, beneficence, nonmaleficence, justice) that provide a framework to inform ethical decision-making.2 | In Billy’s case, clinicians recommended chemotherapy for Billy in attempt to cure his lymphoma (beneficence). Billy and his parents, in contrast, felt that chemotherapy was causing him undue harm, so they wished to proceed with CAM in place of chemotherapy (nonmaleficence, autonomy). |
| Virtue ethics70,72 | Focuses on whether an individual or action is considered “good” (virtuous) according to their alignment with virtues such as compassion, respect, honesty, and advocacy. | In Billy’s case, virtue ethics reflects the character traits and manner of clinicians when caring for Billy during treatment, advocating for Billy and his family’s changing interests, and respect for Billy and his family’s health care choices. A core conflict existed between the clinicians’ virtuous intent to safely treat Billy’s cancer with chemotherapy and radiation and Billy’s interest in protecting himself and treating his cancer with complementary and alternative medicine. |
| Feminist ethics73 | Focuses on structural limitations in the ethical dilemma, including inequities and disparities according to such features as race, age, sex, sexuality, and socioeconomic status. | In Billy’s case, his Native American heritage influenced his decision-making, informing his interest in “natural” treatments. Indigenous persons, however, have a history of discrimination and mistrust in the medical system, in part because of a devaluation of traditional healing and medicine.74 In addition, Billy’s status as an adolescent acted as a barrier to him taking a full role in decision-making about his treatment, reflecting long-standing sociocultural and legal limitations placed on the authority of minors. |
| Case-based (casuistry)69 | Focuses on previous cases as a precedent for notions of what is good/right and how best to proceed in a given case. | In Billy’s case, there was little precedent for determining the optimal response when he ran away, although his case has certainly influenced management of other similar cases in the decades following. Billy himself, however, could have been influenced by previous patients with cancer who used alternative medicine, and by his aunt, who died of treatment-related toxicities while receiving chemotherapy for breast cancer. |
| Narrative ethics71 | Focuses on personal identity, meaning, and moral decision-making through the understanding of unfolding stories. | In Billy’s case, his autobiography provides a post hoc narrative of how he wanted the public to view his experiences and decision-making trajectory. Elements of narrative can also be found in press reports from Billy, his parents, and his clinicians, as well as those who provided Billy with anecdotes of their own experiences with alternative medicine. |
The narrative ethical approach, commonly associated with story-telling, focuses on personal identity, meaning, and moral decision-making through the understanding of unfolding stories.71,75 Narrative approaches can uncover unique patient perspectives that deepen and influence health care understanding, attitudes, behavior, and coping related to ethical concerns.23 Areas of particular interest in narrative ethics are how an individual arrived in their current situation and how they envision moving forward through it.71 A narrative ethics approach provides patients with opportunities to tell their stories, reflect on what they are saying, and come to some resolution of a version of their story they can live with under their particular circumstances.76
Drawing on quotations from Billy’s autobiography,1 Table 3 presents a narrative-inspired description of what he described as important to him. Features that stand out in Billy’s story include his intuitive sense of what is right or good for him, his heritage and faith in a higher power (Billy’s birth father was Native American), his genuine fear of chemotherapy toxicity, his interest in natural and complementary treatment approaches, his active engagement to heal himself, and his interest in being “normal.” These features provide insight about what mattered to him and how he made decisions, offering a unique glimpse at his life through his own eyes and clues about how he ultimately would move forward through his cancer journey, including his decision to forego further conventional therapy and opt for an alternative approach.
Features of Billy Best’s Narrative
| What Matters to Billy | Illustrative Quotationsa |
|---|---|
| Intuitive sense of what is right and good | Deep down I didn’t believe that [treatment] was going to work. I knew chemotherapy was toxic. I was thinking to myself, “We don’t put poison into a well body, so why would I want to put it into a sick body?” (page 47) |
| Native American heritage and faith in a higher power | Did my Native American heritage somehow subconsciously steer me away from the harsh chemotherapy and radiation therapy that was offered? I believe that’s very possible. Did my belief system and my faith in a higher power protect me and show me the path to my healing? Absolutely. (page 19) |
| Fear of chemotherapy toxicity | As [chemotherapy] flowed into my body, I immediately began to feel sick. It tasted like rust in my mouth and it made my jaw hurt. The whole process was overwhelming…I felt like a prisoner, a person with no control, who had been captured as part of a big toxic experiment. I tried to keep my eyes closed as much as possible. (page 54–55) |
| Interest in natural and complementary treatment approaches | Hundreds of letters all shared a common thread - that people suffering from cancer should eliminate four basic food items from their diet. Even though my oncologist had assured me that diet had no effect on cancer, these letters advised which foods I should be eating and which ones I would be smart to avoid. (page 115) |
| Another recommendation that was mentioned repeatedly was a tea - namely Essiac tea…its purpose is to purify the blood and cleanse harmful toxins from the body. That sounded perfect to me! Herbs from nature used to cleanse the body. That was exactly the kind of thing I was looking for. (page 116) | |
| Active engagement in treatment and healing | I decided I wouldn’t do another dose, that I would rather enjoy the rest of my life, however short it might be, than be sick from those treatments. I was not going back to the hospital. Of course, I knew my parents would never agree to this, so I had only one option - the emergency plan I had started to hatch months before. I would run away. (page 58) |
| I’d give myself the [714X injection] right when I woke up. It’s funny; it gave me a sense of accomplishment throughout the day, like I’d completed something really important first thing in the morning. It was a positive thing for me. I really embraced it. (page 162) | |
| Interest in being “normal” | I really wanted to enjoy at least some of the summer like other normal kids, and I needed to prepare myself mentally for the ordeal ahead. [The doctor] gave me a two-week reprieve before I had to begin. (page 48–49) |
| During those first few weeks of treatment, as soon as the initial side effects wore off, I would head out to the backyard to my ramp. I would skate for hours, running through my repertoire of different jumps and grinds. The familiar sound of my skateboard wheels riding and clapping against the wood kept my mind focused...It calmed me down and gave me temporary salvation, taking my mind off my troubles. (page 56) |
| What Matters to Billy | Illustrative Quotationsa |
|---|---|
| Intuitive sense of what is right and good | Deep down I didn’t believe that [treatment] was going to work. I knew chemotherapy was toxic. I was thinking to myself, “We don’t put poison into a well body, so why would I want to put it into a sick body?” (page 47) |
| Native American heritage and faith in a higher power | Did my Native American heritage somehow subconsciously steer me away from the harsh chemotherapy and radiation therapy that was offered? I believe that’s very possible. Did my belief system and my faith in a higher power protect me and show me the path to my healing? Absolutely. (page 19) |
| Fear of chemotherapy toxicity | As [chemotherapy] flowed into my body, I immediately began to feel sick. It tasted like rust in my mouth and it made my jaw hurt. The whole process was overwhelming…I felt like a prisoner, a person with no control, who had been captured as part of a big toxic experiment. I tried to keep my eyes closed as much as possible. (page 54–55) |
| Interest in natural and complementary treatment approaches | Hundreds of letters all shared a common thread - that people suffering from cancer should eliminate four basic food items from their diet. Even though my oncologist had assured me that diet had no effect on cancer, these letters advised which foods I should be eating and which ones I would be smart to avoid. (page 115) |
| Another recommendation that was mentioned repeatedly was a tea - namely Essiac tea…its purpose is to purify the blood and cleanse harmful toxins from the body. That sounded perfect to me! Herbs from nature used to cleanse the body. That was exactly the kind of thing I was looking for. (page 116) | |
| Active engagement in treatment and healing | I decided I wouldn’t do another dose, that I would rather enjoy the rest of my life, however short it might be, than be sick from those treatments. I was not going back to the hospital. Of course, I knew my parents would never agree to this, so I had only one option - the emergency plan I had started to hatch months before. I would run away. (page 58) |
| I’d give myself the [714X injection] right when I woke up. It’s funny; it gave me a sense of accomplishment throughout the day, like I’d completed something really important first thing in the morning. It was a positive thing for me. I really embraced it. (page 162) | |
| Interest in being “normal” | I really wanted to enjoy at least some of the summer like other normal kids, and I needed to prepare myself mentally for the ordeal ahead. [The doctor] gave me a two-week reprieve before I had to begin. (page 48–49) |
| During those first few weeks of treatment, as soon as the initial side effects wore off, I would head out to the backyard to my ramp. I would skate for hours, running through my repertoire of different jumps and grinds. The familiar sound of my skateboard wheels riding and clapping against the wood kept my mind focused...It calmed me down and gave me temporary salvation, taking my mind off my troubles. (page 56) |
All referenced quotations are from Billy Best’s autobiography, The Billy Best Story: Beating Cancer with Alternative Medicine.1
Although narrative ethics (and narrative medicine more generally) has its roots in the 1980s, it did not gain widespread attention until the early 2000s, after Billy had completed treatment.71,75,77 In the years since Billy’s diagnosis, understanding a patient’s story (what they wish their narrative to be) has developed an ever-increasing role in complex decisions, particularly in fields like palliative care and clinical ethics.71,78,79 This evolution has taken place following a similar transformation in the delivery of Western health care, from the paternalistic model to the current standard of shared decision-making.80,81 The term “patient-centered care” was first coined in 1988, signifying for many a shift in focus from the disease to the person.82 This shift continued through the time of Billy’s diagnosis and treatment, with the Institute of Medicine’s identification of patient-centered care as one of the core approaches to improve health care quality in 2001.82,83 Today, “shared decision-making” describes the process by which patient-centered care is delivered, distinguishing it from the preceding era of medical paternalism.82,84 Although it is generally considered the current standard model for health care of adults in the United States, operationalization of shared decision-making in pediatrics, especially with adolescents like Billy, remains controversial.47,85,86 Similarly, it remains unclear how to optimally integrate the narrative of an adolescent into their health care decision-making, particularly given the socioemotional and neurodevelopmental immaturity of some adolescents.47,65,66
Conclusions
The case of Billy Best remains meaningful 25 years since Billy’s diagnosis. His story put Hodgkin lymphoma on the front pages and brought added attention to CAM, the challenges inherent in adolescent health care decision-making, and entrenched disagreements. Furthermore, Billy’s is among notable cases in which the press played an impactful role.
That is not to say, however, that these challenges have dissipated over the past quarter century. Hodgkin lymphoma outcomes continue to improve, with current work focusing on how to minimize the short- and long-term toxicities that troubled Billy so deeply.2 The appropriate role of CAM in health care remains ill-defined; patients and families access it regularly, but most clinicians remain relatively unfamiliar with CAM.87 Perhaps as a result, patients and families often do not inform clinicians of their CAM usage.39 Additionally, although scholars continue to examine how best to navigate entrenched disagreements in medicine, resulting in various new tools and approaches, it is not clear that we are any closer to the “right answer” than we were in 1994. Finally, although adolescents have more of a voice in their health care decision-making than ever before, recent research suggests that we still have improvements to make in this regard.49,50,52
How best to proceed from here? By renewing efforts to optimize communication and understand the perspectives, narratives, and wishes of patients and families, clinicians can work collaboratively to fulfill the promise of shared decision-making, patient engagement, and truly personalized care in pediatrics. At the same time, pediatricians need to be empowered to fulfill their roles and responsibilities as experts in medical facts and therapeutic options (conventional therapies, CAM, treatment refusals, etc).85 Improved communication, in particular, offers promise to further empower adolescents by fostering greater appreciation for their decision-making capabilities, increasing trust between adolescents and their clinicians, and strengthening the triadic adolescent-parent-clinician relationship,50,59 although optimal communication strategies remain elusive.88,89 This relationship also likely will benefit from further understanding of the roles of CAM and social media in modern pediatric practice, as both presumably will only grow in coming years.
Today, we see greater attention paid to engaging adolescents in conversations about their health; educating them about therapeutic options, including benefits, burdens, and alternatives; and integrating them into their health care decisions, although there remains considerable variability and need for improvement.68,90 As the story of Billy Best reveals, adolescents facing life-altering illness have much to contribute to the decision-making process. As clinicians, we owe it to them to listen attentively, integrate their perspectives and priorities into care discussions, anticipate and create space for areas of confusion and disagreement, work at compromise and partnership, and cultivate compassionate curiosity, dignity, and trust through our conversations and actions. Billy Best’s experiences are reflected in various changes to pediatric health care over the past 25 years. With continued focus, the field of pediatrics will continue to learn and grow in part thanks to Billy, a legacy of which he can be proud.
Acknowledgments
The authors thank Kerri Kennedy, MA, BSN, RN for graciously reviewing a previous version of this manuscript and Robert Truog, MD, MA for his feedback. The authors also thank the students and faculty (particularly Tony Breu, MD and Aimee Milliken, RN, PhD) in the Harvard Medical School Center for Bioethics Master’s in Bioethics program, where conversations about this case served in part as inspiration for this manuscript.
Dr Marron and Dr Meyer conceptualized and designed the work, drafted the initial manuscript, and reviewed and revised the manuscript; Ms Mithani drafted the initial manuscript and reviewed and revised the manuscript; all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Dr Marron’s effort is funded in part by the Harvard Medical School Center for Bioethics. The funder/sponsor did not participate in the work.
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