Kristie McNealy, MD

As I mentioned earlier this week, there is a really interesting series on ethics and prematurity going on over at the Preemie Experiment. While reading the resulting comments, it occurred to me that average person on the street probably doesn’t have a very good understanding of the fundamentals of ethical decision making as it relates to medicine in general, and preemies specifically. In fact, it wasn’t until I read a particular comment discussing the concept of beneficence (an obligation to do good), that I even started to think about the issues presented within a real medical ethics framework, despite the months I spent analyzing and debating cases in my medical school ethics course.

The Four Principles

Ethical decision making in medicine is typically guided by four main principles: autonomy, beneficence, non-maleficence and justice.

Autonomy

The term autonomy describes the concept that patients (or proxy decision makers like parents) can make their own decisions on the basis of deliberation. In other words, patients and parents have the right to decide what course of action to follow, after appropriately learning about and weighing the consequences of their choices. One of the cornerstones of autonomy is informed consent. Without accurate and candid information about the potential benefits and risks of a procedure or treatment plan, patients cannot exhibit autonomy. This is a major problem when discussing issues around resuscitation and continuation of care in extremely preterm babies, because all too often, parents are forced to make a decision about treatment, without having the time or opportunity to be informed about the possible outcomes and impacts of the treatments they choose, including the potential longterm complications of prematurity and their likelihood in their baby’s particular case.

Beneficence and Non-Maleficence

Beneficence describes the concept that physicians and healthcare workers have the obligation to provide treatment that will provide a benefit to their patients. However, the concept of beneficence is closely tied to non-maleficence, or the concept that physicians should “first do no harm.” Considered together, medical care must provide net benefit to the patient while causing minimal harm. The concept of harm must be examined within the concept of a patient’s or parent’s beliefs. For instance, if a particular treatment could save a baby’s life, but would leave them permanently handicapped or disfigured, it is at least partially within the parents rights to determine whether the potential or definite harms outweigh the benefits of treatment.  While some parents will opt for life at all costs, others will only want treatment if there is a good potential for intact life, or at the very least life free from chronic pain and complications.

Justice

According to Dr. R Gillon, the concept of justice in medical ethics has three components, “fair distribution of scarce resources (distributive justice), respect for people’s rights (rights based justice) and respect for morally acceptable laws (legal justice).”  While some concepts related to justice are relatively clear cut, others are more difficult.  For example, we can probably agree that patients have a right to not be killed, but we may disagree on whether they always have the right to be kept alive.  Sometimes these components of justice conflict with each other, as in the case when a preemie’s “right” to live is in direct conflict with the concept of fair distribution of the thousands or perhaps millions of dollars in medical resources their survival will cost.

Wrap Up

I think one of the most important things to remember about medical ethics, and what ethics boards do, is that ethics and feelings are separate concepts. Ethical decisions are not determined by how someone feels, but rather, by how the four basic principles of medical ethics apply to a specific situation. Thus, an action which you personally feel is wrong, like withholding care or terminating life support, can be ethical in a given situation.  Sometimes ethical decision making is not clear cut because it’s not always possible to come to a solution that satisfies all 4 ethical principles, and some ethical decisions can lead to tragic outcomes like death.

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