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Below you will find excerpts from cases written by your colleagues, nurses and respiratory therapists in our very own NICU. The excerpts, whether purposefully or not, illustrate a central tenet in ethical decision making for newborns, the best interests standard.
“I felt deep down we were not doing what was best for this baby”
“Most bedside caregivers were frustrated with this patient, not because of the patient but because of the difficulties/issues dealing with the parents and the perception that the parental choices were not always in the patient’s best interest”
Importantly, the idea of making decisions that are in the best interests of the patient stem from the well-known biomedical ethical principle of autonomy. Before we even approach that subject however, a discussion of the book Principles of Biomedical Ethics is prudent.
Principles of Biomedical Ethics was first published in 1979 and it laid the groundwork for the 4 basic biomedical ethics principles many of us a familiar with: autonomy, justice, beneficence, and non-maleficence. It is within the principle of autonomy that the best-interests standard is grounded. We will begin our discussion with the principle of autonomy.
You can think of an autonomous choice as consisting of three facets; intentionality, understanding, and non-control. First, let's discuss what intentionality means. Basically, intentionality refers to actions someone does with plans for an intended outcome. The action doesn't need to achieve the intended result, only that someone had a plan.
Understanding is the second condition of autonomy. If someone does not adequately understand their action, whatever they did is not considered autonomous. I'll explain. Let's say we are discussing the ongoing plan of care for a patient in the surgical ICU. The patient is awake and alert, capable of making their own decisions, but we fail to disclose all of the information we have at our disposal. In this instance, the person's choice about their care is not autonomous given they did not fully understand the choice at hand. An action is not autonomous if someone has a condition that limits their understanding. Examples include immaturity (children, for example), illness (dementia), or irrationality. Deficient communication also hampers autonomy and is likely common in medicine and nursing.
Regarding non-control, someone's actions are autonomous if they are free of control by external or internal forces. An external controlling influence can be one person exerting control over another in their decision-making. Internal controlling influences exist and include mental illness.
The actions of an autonomous person are either intentional or not intentional. Understanding and non-control, however, exist on a continuum. Someone may not have a full understanding of an action but enough to satisfy the principle of autonomy. For example, babies are wholly unable to understand their actions, but they participate more in decision-making as they mature into children and adolescents. The concept of children developing to make their own decisions as adolescents and adults brings us to the idea of authority.
Decisions in the NICU fall into one of three categories. Thankfully, the most common category occurs when both the healthcare team and parents agree on a care plan to use all indicated therapies. Sometimes, both the healthcare team and the parents agree that treatment burdens far outweigh the potential benefits. In such cases, withdrawal of life-sustaining measures (WLSM) is pursued. The third category is the primary source of ethical conflict in the NICU: disagreement between the healthcare team and the parents regarding the direction of therapy and ongoing provision of life-prolong therapies.
We discussed autonomy as an action one takes over themselves. If someone loses the ability to make decisions (or does not have it, like a baby), someone else has decisional authority over them as their surrogate decision-maker.
Strictly speaking, the best interests standard dictates that a parent exclude consideration of an impaired child's life's adverse effects on siblings or their family. A less strict interpretation and the one I adhere to most closely defines the standard as a positive obligation and duty to do what is best to promote someone's interests. The best interests standard should take into account both present and future considerations. The decision arrived at by the parents should be the decision with the most net benefit and least net harm.
Important present considerations for newborns include the ability to feel pleasure and avoid suffering. The determination of the degree of suffering in a newborn depends on the healthcare team and parents' judgments. Future considerations include the newborn's potential ability to, one-day, develop an awareness of self, have human relationships, and to further minimize pain and suffering. The topic of suffering in the context of the patient's best interests acts as a source of much moral conflict. We will cover this more in another post.
References:
Beauchamp T, Childress J. Principles of Biomedical Ethics. Oxford University Press. 8th Edition. 2019
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