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INTRODUCTION

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Caring for children with medical complexity (CMC) requires substantial time, effort, knowledge, and commitment on the part of families and healthcare professionals, and also involves a willingness to grapple with unique and complex ethical issues. It is important for general pediatricians and practitioners who work with children with disabilities to understand these ethical issues and develop skills in problem solving and ethical analysis. Here, we present a brief review of the basic principles of medical ethics as they relate to CMC and a discussion of specific or unique ethical issues in CMC and models for ethical problem solving.

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PRINCIPLES OF MEDICAL ETHICS IMPORTANT IN CARING FOR CMC

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The basic principles of medical ethics are autonomy, beneficence, nonmaleficence, and justice. The relative importance of these principles varies based on source and situation, and also on the addition of the principles of veracity and fidelity. There are some caveats to these principles that are particular to pediatrics and even more so to CMC, as many in this population have a variable between chronological age and developmental or cognitive ability.

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Autonomy

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Autonomy literally means “self-rule” and refers to the patient’s right to make decisions and act on them freely and without interference. An important qualification to the right to autonomy is that the decision-maker have capacity, which is not typically present in CMC. However, autonomy and capacity should be viewed on a spectrum and relevant to the decision to be made. For example, a patient who has the developmental level of a 6-year-old likely does not have the capacity to make complex treatment decisions, but he or she can indicate a preference for cherry- or grape-flavored medication.

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Parents usually assume the role of surrogate decision-maker for children and are given parental authority, which does not replace patient autonomy. For example, if a mother wishes to pursue tracheostomy in a patient who is deemed inappropriate for surgery by the medical team, the ethics committee is consulted to help determine the next steps. The ethics committee would need to balance issues of parental authority, not patient autonomy, with other ethical principles in advising the medical team.

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Common topics in pediatric care are issues of parental consent for a procedure or treatment plan as well as pediatric assent. The 2 can and should coexist when applicable. Consider, for example, a situation in which the parents of a patient with severe scoliosis wish to pursue spinal surgery, but the patient has the cognition to understand that this surgery will inflict pain and does not wish to proceed. In this scenario, we have parental consent but do not have patient assent, so further discussion and mediation should occur.

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Beneficence and Nonmaleficence

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Beneficence underscores the moral obligation to act for the benefit of others. In medicine, beneficence requires the physician to act in ...

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