Decision-making in end-of-life care in pediatrics: ethical controversies and management of situations in clinical practice

Abstract

The concept of “Limitation of the therapeutic effort” (LTE) is based on the withdrawal or non-initiation of futile treatments that delay the death of the patient and prolong their agony. Although medical advances have made it possible to reduce infant mortality rates, management of end-of-life decisions at these ages continues to be difficult and includes ethical and controversial issues of complex resolution. This paper reviews the medical literature and various reference guides aiming 1) to describe some of the most frequent ethical controversies described in the literature and 2) to offer guidance on how to deal with situations of uncertainty that can present themselves in the clinic, integrating them into the physician-family-patient relationship. To do this, the body of the review has been divided into several sections: first, we will review the most recent bibliography related to the complexity and types of LTE described, and the ethical controversies that this poses. Next, we will address the role of the doctor in LTE and the interaction between these ethical controversies and the doctor’s own morals, where an attempt will be made to establish a general orientation of the steps that the doctor should take when making decisions. The next step goes beyond the purely care setting and will consist of including the doctor in the decision-making process relating to the family, going through the bibliography that tells us about the most frequent needs and problems that can arise in this context. Finally, we will integrate the pediatric patient in this process, analyzing very briefly the most frequent problems that may occur in the last oments of life. All this makes us consider the importance of clinical practice guidelines in LTE.