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How Can We Practice Ethical Medicine When the Evidence Is Always Changing?

Journal of Child Neurology 2015, Vol. 30(11) 1549-1550 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0883073814563141 jcn.sagepub.com

Garey Noritz, MD, FAAP, FACP1

Abstract The practice of ethical medicine requires that the clinician offers interventions that are likely to help (beneficence), avoid interventions that are likely to harm (nonmaleficence), and allow for autonomous decision making. Our determination of what is in the best interest of the patient is dependent on the state of medical evidence at the time. However, as evidence evolves, the balance of beneficence and nonmaleficence may change, even to the extent of a complete reversal. In this article, I explore the issues of autonomy, particularly parental autonomy for a child, in a world in which the evidence is always changing. Keywords ethics, evidenced based medicine, professionalism, pediatrics, end-of-life care

I sit on the ethics committee of our children’s hospital. Almost all cases that we consider fall into a similar vein, ethically speaking. The core issue is almost always: the autonomy of the parents as surrogate decision makers in conflict with the recommendations of the medical team. Despite the inherent uncertainty of medical treatment, the team’s recommendations are usually made quite strongly. Most cases involve a child with some kind of severe chronic illness or disability; without fail, every case is tragic. We were recently asked to consider an essay by Rhodes and Holzman from 20041 in preparation for an upcoming case from neonatology. Like many essays on ethics, the authors point to acute appendicitis as a starting point for considering capacity and the limits of parental autonomy. They state, ‘‘Appendectomy for appendicitis is the kind of treatment that is very likely to provide significant benefit with few significant and enduring disadvantages. Death is the most likely consequence of refusing appendectomy.’’ Thus, parents who refuse appendectomy for their children must be compelled, by legal authority if necessary, to allow surgery to proceed. This has been an axiomatic case in the ethics literature because of the certainty that surgery is the correct treatment . . . until now. Minneci and colleagues recently published evidence that acute appendicitis can often be treated nonsurgically,2 with equivalent or improved outcomes without surgery. This was not a randomized trial—parents of children who met the eligibility criteria chose whether their child would undergo immediate surgery or antibiotic treatment with close monitoring. Importantly, the outcomes included quality-of-life measures, and most parents in each group were satisfied with their decision. This is hardly the first intervention that has turned dogma on its head in this early phase of my career. For example, I was

urged in training to treat postmenopausal women with estrogen to prevent coronary disease,3 and to prescribe a COX-2 inhibitor as a safer anti-inflammatory than nonselective anti-inflammatories.4 Both of these interventions are now thought to be harmful. The current debates regarding screening for breast and prostate cancer5,6 are other examples in which the evidence I was taught is quite the opposite of the evidence as we now understand it. This constant revision of the evidence leaves me with great uncertainty as I advise families in the care of their children. The problem is that ‘‘evidence’’ cannot be regarded as truth. If the appendicitis case can no longer be used as a truism, if the most obvious case of medical beneficence is no longer obviously beneficent, how can we approach the cases that are less obvious? What was maleficent in 2004 (refusing appendectomy) is a reasonable option in 2014. As the surety of our evidence waxes and wanes, how will we approach the anguished family who rejects a seemingly obvious recommendation? Most important decisions in medical care have even less evidence to guide us. Consider a child with severe cerebral palsy who has frequent respiratory infections, often requiring intubation. A tracheostomy is offered as a therapeutic option. When counseling the family, I can never give a strong recommendation, because I don’t have answers to the following questions: Will a tracheostomy help the child live longer? Have a better quality of life? Stay out of the hospital more?

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Ohio State University, Nationwide Children’s Hospital, Columbus, OH, USA

Corresponding Author: Garey Noritz, MD, FAAP, FACP, Department of Pediatrics, The Center for Pediatric Bioethics, Nationwide Children’s Hospital, The Ohio State University, 700 Children’s Dr, Columbus, OH 43205, USA. Email: [email protected]

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Participate more fully in life? None of these questions have been answered to my satisfaction in any kind of evidencedbased way. Since I don’t have evidence to guide these recommendations, my task in working with the family is to explore the situation of each child, and each family, individually. I need to help the family consider their goals and their values. I discuss the situations I have experienced with other families—that some who choose tracheostomy for their children do experience less illness and fewer hospitalizations, and that some do not. Some children are more comfortable with the tracheostomy; others seem to suffer more. Some children die without their tracheostomy, and some die despite their tracheostomy. I never pretend for a moment that I have the right answer. In most such cases, I consider parental autonomy to be the main driver of the decision. I would stop short of offering a tracheostomy to a baby with anencephaly, or a child that is dead based on neurological criteria, but almost every other situation would at least warrant a discussion. It strikes me that we have fewer and fewer situations in which the best interest of the child is so clear that it would trump parental autonomy. This great deference to parental autonomy troubles me, as I also believe that children are not ‘‘owned’’ by their parents7 and sometimes need to be protected from them. I know that nothing is more dangerous to rationality than parental love and distress in the midst of a childhood crisis. It is extremely difficult for parents to truly find the objectivity needed to make autonomous decisions while their child suffers. Parents must separate their best interests from the child’s, and they are inherently intertwined. In these circumstances, it is then necessary for the doctor to be arbiter not just of the medical situation, but also the family dynamic and competing best interests. However, we can’t do any of these tasks with great certainty, and few clinicians can do this on their own. This is why collaboration with disciplines such as nursing and social work are integral to such situations, and why the ethics committee is such a valuable resource. The duty then remains to truly educate parents about the benefits and burdens of the treatments I propose, at least as well as current evidence allows. Both parents and clinicians need to understand that the best available evidence is only the best for that fleeting moment in time. More important is the careful

consideration for what an action will mean for the individual child. The certainty of any action needs to be balanced with a humility that the evidence is always changing, but that the art of medicine will serve us forever.8 Acknowledgments I thank Pedro Weisleder, MD, PhD for his thoughtful review of the manuscript.

Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author received no financial support for the research, authorship, and/or publication of this article.

References 1. Rhodes R, Holzman IR. The not unreasonable standard for assessment of surrogates and surrogate decisions. Theor Med Bioeth. 2004;25:367-385. 2. Minneci PC, Sulkowski JP, Nacion KM, et al. Feasibility of a nonoperative management strategy for uncomplicated acute appendicitis in children. J Am Coll Surg. 2014;219:272-279. 3. Writing Group for the Women’s Health Initiative. Risks and benefits of estrogen plus progestin in healthy postmenopausal women: principal results from the women’s health initiative randomized controlled trial. JAMA. 2002;288:321-333. 4. Mukherjee D, Nissen SE, Topol EJ. Risk of cardiovascular events associated with selective cox-2 inhibitors. JAMA. 2001;286: 954-959. 5. Screening for breast cancer: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med. 2009;151:716-726. 6. Moyer VA.Screening for prostate cancer: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med. 2012;157: 120-134. 7. O’Rourke KD. A Primer for Health Care Ethics: Essays for a Pluralistic Society. 2nd ed. Washington, DC: Georgetown University Press; 2000. 8. Noritz G. To dream, perchance to sleep. Med Health R I. 1999;82: 289-290.

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How Can We Practice Ethical Medicine When the Evidence Is Always Changing?

The practice of ethical medicine requires that the clinician offers interventions that are likely to help (beneficence), avoid interventions that are ...
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