Shared decision making in young elite and professional athletes: pros and pitfalls

Over the last few decades, sports physicians and cardiologists have been increasingly confronted with individuals with cardiovascular (CV) conditions seeking counsel regarding safe sport participation. Such consultations aim to combine the multiple benefits of exercise, the small risk of adverse cardiac outcomes, and the patient’s motivation to remain fit and pursue a competitive athletic career. To this end, scientific societies have periodically released statements and guidelines to help physicians in this difficult task, the most recent being the European Society of Cardiology (ESC) Guidelines for Sport Cardiology.1 In line with current clinical practice, the ESC document encourages shared decision making (SDM) between the physician and the patient-athlete. There are several elements in favour of the implementation of SDM in athlete’s health management (i.e. pros), as SDM takes into account the best available clinical evidence, as well as the patient values and preferences, to achieve a deliberative decision shared by both parties. Shared decision making is instrumental to preserve the liberty of choice, the right to review risk, and the personal autonomy of the patient to pursue the exercise plans that align with their goals, preferences, and values. In this process, it is the duty of the physician to explain the clinical characteristics of the disease, the risk associated with sport participation, and the long-term impact of the athletic career on the natural course of the disease. Then, the scientific knowledge and expertise of the physician coupled with clarification of the motivations and goals of the patient will allow the dyad to reach an agreement on how to safely pursue the athletic lifestyle. This is typically the scenario with the older and/or recreational athlete, in whom sport participation is aimed to preserve an active and healthy lifestyle. In this case, SDM facilitates a shared agreement concerning the appropriate exercise recommendation. However, clinical experience suggests that implementing SDM may become challenging in clinical practice2 and especially in young elite and professional athletes with CV conditions, who are usually asking to resume competitive athletic activity without restrictions or limitations. In these circumstances, SDM may show intrinsic inadequacies, (i.e. limitations) that are discussed here below. The most relevant challenge is the definition of the risk in relation to sport participation in the individual patient-athlete. At present, this process is largely academic and often speculative, due to the scarcity of scientific evidence assessing the impact of different sport types on the clinical course and outcome of CV diseases. Compared to other areas of clinical cardiology where large longitudinal observations and randomized and blinded studies have provided ample evidence-based recommendations, sports cardiology is a novel area where scientific observations assessing the clinical course of CV disease in athletes are largely limited to small cohorts or case reports. As a consequence, most guideline recommendations are Class II with level of evidence C. In this context, a physician cannot pinpoint the influence of sport on most cardiac conditions with certainty. Risk stratification in patients with hypertrophic cardiomyopathy (HCM) willing to engage in competitive sport represents a common example. Recently, a number of observations have called into question the perception that patients with HCM are at high risk of sudden cardiac arrest/death (SCA/D) during sport2–6 and a more permissive attitude has been incorporated into contemporary guidelines to advise sport participation in ‘low risk’ HCM patients.1 However, the quantification of risk amongst athletes with HCM remains largely controversial.3–6 Even patients judged at ‘low risk’ by clinical assessment might nevertheless be susceptible to SCA/D,7,8 and some deemed ‘high risk’ have continued athletic competition without sustaining SCA/D.6 Indeed, risk stratification is particularly challenging in the adolescent/young HCM athlete: at an age where competitive athletic careers are just beginning to take shape, HCM phenotypes are known to evolve rapidly and the risk of SCA/D is the highest.9 As such, risk assessment cannot be considered a ‘one-time’ event, and adequate care and counselling require regular re-assessment and re-appraisal of risk. These challenges complicate the legal responsibility of the physician. This is of outmost relevance in Italy, where physician is, by law, the responsible person for eligibility/disqualification decision making, which conveys his/her full responsibility in case of improper behaviour leading to athlete’s death or harm. In other countries, physicians may also be exposed to legal consequences based upon their medical recommendations should the athlete suffer harm or death.10 A relevant challenge comes in the translation of risk from physician to athlete-patient. For SDM to succeed, it is imperative to ensure that the athlete fully understands the risks associated with the specific cardiovascular condition. The athlete should be able to properly describe any relevant clinical information to the physician, as withholding components of the medical history can significantly impair accurate estimation of risk. Particularly for young athletes or those with less health literacy, there will be challenges in communicating and gauging understanding of complex risk estimates. Moreover, young athletes usually feel themselves invulnerable, and are willing to accept any hypothetical future risk in order to pursue in their athletic career. Despite the best efforts of both physician and athlete, a measure of heterogeneity in the quantification, interpretation, and delivery of risk estimates will remain. This heterogeneity stems from a variety of sources: differences in available or utilized clinical guideline documents, differences in athletic institution’s policies and attitudes, and differences in the roles within the patient/physician relationship and the cultural position of sport and the athlete. These differences are increasingly encountered by athletes in a world where telehealth and global athletic competition have both allowed and forced athletes to seek care from a diverse array of medical professionals. In addition, third parties enter the decision-making process besides the athlete and physician: parents, guardians, partners, sponsors, athletic associations, schools, and other medical providers can also play a role. When so many parties are involved in a complicated discussion, there is a risk of ‘diluting’ the meaningful medical information and advice amongst a sea of competing concerns—financial, reputational, legal, etc. Furthermore, the other decision-makers may not have the athlete’s health and safety as their primary priority Figure 1. The impact of physician’s advice may be confronted with the combined weight of the athlete, relatives, coach, college, sponsor, or media advices in the unfortunate case of shared decision-making disagreement. Physicians who are hired by federations, universities, or professional organizations are obliged to make recommendations based on a responsibility to their employer, not just the athlete-patient. Physicians who make recommendations for high-profile athletes are likely to find their recommendations made public. As a result, physicians may be (knowingly or unknowingly) influenced by external incentives. For example, a physician who recommends restriction from athletic competition may be viewed as overly conservative, and athlete-patients may be motivated to seek out more favourable advice from other providers. Alternatively, in front of a well-known athlete-patient with a high public profile or promising athletic career, the physician may be inclined (consciously or subconsciously) to make more permissive recommendations. In a world where professional athletes can seek multiple medical opinions, the physician may find themselves just one of many potential SDM conversations in which a given athlete may engage. Though the freedom to seek multiple medical opinions and special medical expertise should be ideally available to all athletes, there is also the risk of exacerbating systemic inequalities for athletes with fewer financial resources or social support and connections. Physicians may eventually struggle to navigate SDM situations where the athlete, despite an unequivocal high-risk cardiovascular condition, expresses a strong desire to continue unrestricted athletic competition. In this circumstance, how should the physician balance the patient’s motivation with the pathophysiologic mechanisms and near and future negative health consequences? How should the physician balance his or her medical and ethical priorities when an athlete chooses to continue to compete despite a medical recommendation otherwise? How do the athlete and physician objectively navigate a situation in which large public visibility and substantial sums of money are at risk of transforming the athlete into a commodity, rather than a whole person, with health outcomes to consider? To what extent do portrayals of athletes with health problems in the popular media alter the views and priorities of the athlete and physician? Conceivably, the physician may feel that focus of SDM on individual choice may impair their primary responsibility to protect the patient’s health and address the cardiac condition that is present. For example, in the case of a young athlete diagnosed with an unequivocally high-risk cardiac condition who doggedly seeks to continue athletic competition, a scenario could be envisioned whereby the physician feels their recommendation is made irrelevant, and thus their main duty (to protect the health and wellbeing of the patient) has been jeopardized. So long as professional sports generate immense public recognition and financial gain, particularly for young athletes, the physician engaging a patient in SDM may encounter a complex web of overt and covert influences. Nonetheless, the physician represents a vital tool to preserve the athlete’s health and minimize the risk of future adverse events. As physicians, finally, we should be mindful of the limitations of our knowledge, our potential for bias, and the influence of non-medical factors and actors in the decision-making process. A.P. and K.L. contributed to the conception or design of the work. A.P. and K.L. drafted the manuscript. A.P. and K.L. critically revised the manuscript. All gave final approval and agree to be accountable for all aspects of work ensuring integrity and accuracy. No fund was required for the present work. The data underlying this article will be shared on reasonable request to the corresponding author.