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Harms and benefits of screening young people to prevent sudden cardiac death

BMJ 2016; 353 doi: https://doi.org/10.1136/bmj.i1156 (Published 20 April 2016) Cite this as: BMJ 2016;353:i1156

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Cardiac Disorders and the Risk of Sudden Cardiac Death: Athletes Should Have The Right to Know and Decide.

The diagnosis of heart rhythm disorders or cardiomyopathies in a competitive athlete most frequently leads to the discontinuation of their sporting career due to concerns of disease progression and exercise-induced sudden cardiac death. However, potential career-ending decisions are complex, associated with medical, and ethical challenges, and may result in significant psycho-social and economic adverse consequences for the athlete.

The recently published systematic review by Van Brabant et al. suggests that “as long as those at high risk of sudden death cannot reliably be identified and appropriately managed, young athletes should not be submitted to pre-participation screening” [1]. We think that this may be an over-simplified interpretation of data which neglects two important concepts of 21st Century Medicine which complement each other: Informed Consent and Empowerment.

According to Van Brabant and colleagues, screening for potentially arrhythmic disorders in athletes currently provides a high rate of false positives and findings of uncertain significance [1]. However, we believe that through abandoning the current system, which is clearly imperfect, not screening at all would cause the loss of transparency and safety we have been slowly trying to achieve. This may inadvertently place individuals at risk of life-threatening events. There is a delicate balance between overprotection of the athlete and complete abandonment of any screening process due to the limitations of current screening regimens. Through taking Informed Consent & Empowerment into account we could ensure athlete (patient)-centred medical practice where the athlete is made fully aware of the clinical findings and their significance with the opportunity to be involved in the decision-making process. It is now morally and ethically accepted that: the patient has the right to know, the right to decide and be involved in treatment decisions or participating in situations that can put his health at risk. This approach would help redress the current uncertainties regarding screening.

The Right to Know: Informed Consent

When a condition is detected and the risk of lethal events is uncertain, a thorough discussion between the involved parties is crucial to avoid future health issues, and/or legal problems [2]. Furthermore, it is also known that even when all screening tests are negative, the risk of sudden arrhythmic events is still not zero even though it is extremely low [3]. This means that in theory all athletes should undergo such a consent process, and it is vital that all sports organizations provide appropriate means to deal with sports-related cardiac arrest.

Obtaining patients’ informed consent has now become a routine and mandatory part of medical practice [4]. Involving the different parties (athlete/patient, physician and sports team/organization) in a joint informed consent, where parties involved assume their duties and obligations could be of benefit, as it would ensure good communication, truth, and exchange of information, and increase the awareness of potentially life-threatening situations (even if the risk is very low). This should lead to wider availability of automatic external defibrillators on playing fields, advantageous to both athletes (with known or unknown cardiac conditions), and non-athlete bystanders/supporters. Athletes’ relatives could also benefit from this practice, as these conditions are often hereditary.

The Right to Decide: Empowering Athletes with Cardiac Disorders

Empowerment is a process through which people are involved over the decisions and actions that affect their own lives. In the context of a cardiac disorder, empowerment means giving an athlete the chance to participate in the decision about whether or not to remain active in competition. In recent decades, patient empowerment has been gaining increasing momentum in clinical decision-making [5], but unfortunately it has failed to make its transition to the field of cardiac disorders in competitive athletes. Usually, athletes have little say and are not asked to play an active role in the final decision regarding possible disqualification or eligibility. A model of empowerment that contemplates the athlete’s preferences, and helps in balancing the pros and cons of continuing/discontinuing sports practice, and gives the individual the opportunity of having a last word in the final decision, if he so chooses, is crucial.

Our perspective is that the eligibility process should be kept as transparent and safe as possible, and therefore, athletes should be granted with the right to know if they have a cardiac condition, and then be given the opportunity to decide accordingly (to make an informed-decision). If an athlete is diagnosed with a cardiac condition, namely if its risk is uncertain (“grey area”), he/she should play an active role in the decision-making process of eligibility vs. disqualification. It is our belief that this is crucial for protecting the athlete’s best interest, informing him/her about his/her cardiac condition, introducing transparency in the management of the situation, and planning the future health care of the patient. This will allow the athlete to have the best treatment, avoiding health and legal problems-ultimately it is a matter of respect for the individual’s human rights. Examples of problems (deaths, severe disability, depression, economic problems, and litigation) arising from lack of communication and failure to provide information regarding the ongoing cardiac disorder, and consequently not providing the best possible and lifesaving treatment are abundant in the literature [6]. This could potentially be avoided by involving the athlete in the whole process.

References
1. Van Brabandt H, Desomer A, Gerkens S, Neyt M. Harms and benefits of screening young people to prevent sudden cardiac death. BMJ. 2016;353:i1156.
2. Maron BJ, Mitten MJ, Quandt EK, et al. Competitive athletes with cardiovascular disease: the case of Nicholas Knapp. N Engl J Med. 1998;339:1623–5.
3. Rosso R, Kogan E, Belhassen B, et al. J-point elevation in survivors of primary ventricular fibrillation and matched control subjects: incidence and clinical significance. J Am Coll Cardiol. 2008;52(15):1231-8.
4. General Medical Council. Consent: Patients and Doctors Making Decisions Together. 2008;6-33. Available at: www.gmc-uk.org/guidance
5. Chamberlin, J. A working definition of empowerment. Psychiatric Rehabilitation Journal. 1997;20, 43-46.
6. Hamed v Mills & Tottenham Hotspur Football Club [2015] EWHC 298 (QB). Royal Courte of Justice, Strand, London, WC2A 2LL, Date: 16/02/15, available online:
http://www.39essex.com/content/wp-content/uploads/2015/02/Final-Hamed-v-... , last

Competing interests: No competing interests

23 June 2016
Rui Providencia
Cardiologist, MD PhD
Carina Teixeira (2) PhD, Oliver R. Segal (1) MD, Augustus Ullstein (3) QC, Kim Mueser (2) PhD, Pier D. Lambiase (1,4) PhD FRCP FHRS; 1 - Barts Health NHS Trust, London, United Kingdom; 2 – Centre for Psychiatric Rehabilitation, Boston University, Boston, Massachusetts, United States of America; 3 – 39 Essex Chambers, London, United Kingdom; 4 - University College of London, London, United Kingdom.
Barts Health NHS Trust, London, United Kingdom
West Smithfield, London EC1A 7BE