Medical ethics: a brief user's guide
In the last two posts I’ve written a little about medical ethics in a particular context — that of technology-dependent children. In this post I’ll expand the discussion to give you a brief user’s guide to medical ethics. It isn’t an esoteric subject. In fact, many of us encounter medical ethics quite suddenly and unexpectedly with our loved ones or even ourselves.
So what are the accepted principles of medical ethics? There are four main principles, which on the surface are quite simple. They are these:
1. Beneficence (or, only do good things)
2. Nonmaleficence (or, don’t do bad things)
3. Autonomy (or, the patient decides important things)
4. Justice (or, be fair to everyone)
The first of these principles, beneficence, is the straightforward imperative that whatever we do should, before all else, benefit the patient. At first glance this seems an obvious statement. Why would we do anything that does not help the patient? In reality, we in the PICU are frequently tempted to do (or asked to do by families or other physicians) things that are of marginal or even no benefit to the patient. Common examples include a treatment or a test we think is unlikely to help, but just might.
There is a long tradition in medicine, one encapsulated in the Latin phrase primum non nocere (“first do no harm”), which admonishes physicians to avoid harming our patients. This is the principle of nonmaleficence. Again, this seems obvious. Why would we do anything to harm our patients? But let’s consider the example of tests or treatments we consider long shots — those which probably won’t help, but possibly could. It is one thing when someone asks us to mix an innocuous herbal remedy into a child’s feeding formula. It is quite another when we’re considering giving a child with advanced cancer a highly toxic drug that might treat the cancer, but will certainly cause the child pain and suffering.
Our daily discussions in the PICU about the proper action to take, and particularly about who should decide, often lead us directly to the third key principle of medical ethics, which is autonomy. Autonomy means physicians should respect a patient’s wishes regarding what medical care he or she wants to receive. Years ago patients tended to believe, along with their physicians, that the doctor always knew best. The world has changed since that time, and today patients have become much more involved in decisions regarding their care. This is a good thing. Recent legal decisions have emphasized the principle that patients who are fully competent mentally may choose to ignore medical advice and do (or not do) to their own bodies as they wish.
The issue of autonomy becomes much more complicated for children, or in the situation of an adult who is not able to decide things for himself. Who decides what to do? In the PICU, the principle of autonomy generally applies to the wishes of the family for their child. But what if they want something the doctors believe is wrong or dangerous? What if the family cannot decide what they want for their child? Finally, what if the child does not want what his or her parents want — at what age and to what extent should we honor the child’s wishes? As you can see, the simple issue of autonomy is often not simple at all.
The fourth key principle of medical ethics, justice, stands somewhat apart from the other three. Justice means physicians are obligated to treat every patient the same, irrespective of age, race, sex, personality, income, or insurance status.
You can see how these ethical principles, at first glance so seemingly straightforward, can weave themselves together into a tangled knot of conflicting opinions and desires. For example, as a practical matter, we often encounter a sort of tug-of-war between the ethical principles of beneficence and nonmaleficence — the imperative to do only helpful things and not do unhelpful ones. This is because everything we do carries some risk. We have different ways of describing the interaction between them, but we often speak of the “risk benefit ratio.” Simply put: Is the expected or potential benefit to the child worth the risk the contemplated test, treatment, or procedure will carry?
The difficult situations, of course, are those painted in shades of grey, and this includes a good number of them. In spite of that, thinking about how these four principles relate to each other is an excellent way of framing your thought process.
If you are interested in medical ethics, there are many good sites where you can read more. Here is a good site from the University of Washington, here is a link to the President’s Council on Bioethics (which discusses many specific issues), and here is a collection of many other sites of interest. If you want a really detailed discussion, an excellent standard book is Principles of Biomedical Ethics, by Beauchamp and Childress.
Hi Dr. Johnson, I am reading your book “Your Critically Ill Child” and I wanted to express my gratitude to you for writing it. I especially appreciated the chapter on medical ethics, as our family has had to decide about a DNR for our 1 year old daughter who has a severe mitochondrial disorder. Your insights have helped me understand that allowing my child to die does not mean that I don’t love her enough or that I’m not strong enough to handle her situation. Thank you again, and remember that you have helped at least one family immensely.
Thanks so much for your comment. It’s always hard to know if I’m doing any good or not when I write these things, so I’m glad to hear that you found my book helpful.
Best wishes to you and your family.