The “Morbid Book Group” recently read John Lantos’ book on ethical issues in Neonatal Intensive Care Units (NICUs), The Lazarus Case. As one of our members is a pediatric physician, one is a NICU nurse, another a hospital social worker, and another a former obstetrics nurse–we had quite a bit at stake when discussing this book, and quite a few different perspectives. Add to the mix my armchair-philosopher and educator point of view and all the questions a non-medical person has to ask to clarify the issues, and we spent the evening in lively and often challenging discussion.
Lantos tells his readers that medical ethics questions are not really answerable. They depend too much on cases, contexts, and–whether we like it or not–economic situations. An example: Until third-party payer systems are dismantled or significantly changed, confirms the doctor in our book group, NICUs will continue to be profit centers in addition to places where terrifyingly premature babies are saved, or not saved, not so much by technology as by individual circumstance over which doctors and nurses have less control than the parents of these neonatal patients may think.
The NICU nurse told us that Lantos’ book made her question her vocation. One of his observations is that NICUs have become the profit-hub of many hospitals in the USA; then, he asks tough ethical questions about “viability” and “pain and suffering.” The nurse says she sees these babies suffering and feels that too often, the suffering is prolonged when the baby is clearly unlikely to survive–prolonged because the parents cannot let go and the technology promises miracles that only occasionally occur. The doctor in our group gave us her point of view, which many of us found a bit too “scientific”–but that’s how doctors are trained, as she reminded us, while acknowledging heartily that doctors need more real-life experience in compassion, listening, and psychology than they receive in med school or as interns.
These are the sorts of circumstances that lead us to philosophy. Lantos writes: “Moral reflection begins with a particular type of suffering,” when we are faced not with abstract ethical dilemmas but genuine, frightening, life-altering situations. Lantos argues that doctors must not be “passive vessels” dispensing adrenaline, oxygen, delivering technology to a human being whose individuality the physician may not even notice in those crucial moments. He does not deny that there is value in the dissociated emergency response protocol, when the doctor’s training takes over and pulls the person acting away from emotion.
There is a “but,” however. Lantos says there are times when the healer is the medicine, when trust in the doctor, and the doctor’s willingness to take time to listen to the patient, can “create a moral framework for dealing with the limitations of being human, of getting sick, suffering, weakening, dying,” when it is understood that the patient might die while under the healer’s compassionate care, and there need be no blame.
How do we get our society there?
“We make changes in medicine the way we make changes anywhere,” says our book-group doctor. “All of you are asking me very hard questions. I don’t have answers to all of them, and you may not agree with my answers or my rationale. And that’s great! Medicine needs to be challenged. There is no way for the medical industry–and it is an industry–to grow in a more positive way if patients and their families, ethicists, and even the damned lawyers remind us that behind the technology is always, always, a singular human being…it ain’t just a science. It’s an art.”
Doctors do need to be educated in the humanities, we agreed, and to spend more time learning about culture and psychology through experiences that develop compassion. Patients need to learn to ask more specifically for that kind of response, and to let hospital administrators understand how often it is lacking. Most of all, we need not to shy from asking the Hard Questions, those life-and-death ethics questions. Not for the sake of answers, but for the sake of discourse and understanding.
If you want a breezy article about how to go about the process of talking about what we fear and wonder at, here’s an article from HuffPost. A reply to Lantos’ critique of NICUs from Jonathan Muraskas and Kayhan Parsi is here.