Narrative Bioethics

For many of you, Pediatrics is a foreign country and Neonatology an exotic destination. Nonetheless, I would invite you to think about a report in the January edition of Pediatrics that explores the topic of "futility" in healthcare. (1)  As you may know, some professional bodies have cautioned against invoking "futility" as we advocate for limiting aggressive medical intervention in the care of dying patients.  Why is that?  We do know that state law has something to do with it, but beyond this, the whole topic is mysterious to many informed clinicians.  

The authors report on the case of a mother admitted in preterm labor at 25 week gestation with a history notable for a large fetal omphalocoele identified at an 18 week ultrasound.  The parents had planned to deliver at a tertiary care center to facilitate neonatal surgery and associated care.However, with the occurrence of preterm labor, the Neonatologist was confronted with a very different set of considerations.  According to the report, a 2:00 am discussion with the parents proceeds as follows:

The neonatologist explains that because of the combination of extreme prematurity and severe congenital anomaly, delivery room resuscitation will be futile. She explains that the pediatric surgeon concurs with this assessment. She informs the family that the infant will be given excellent palliative care so that she will not suffer. She encourages the parents to hold their infant after she is born.The family is irate. The mother says, “This is wrong. You can’t just let her die. Please try to save her life. Do everything that you can.” The father says, “We are calling a lawyer. We demand that you do something to help our baby!”

Every physician will recognize this as a tragic failure of physician-patient relationship. Could  this doctor have predicted it?  More important, was it avoidable? To understand this better, at least two points deserve thought. And yes, we do well to be sensitive to the fact that at two in the morning, this neonatologist may not have had the luxury of reflection. First, what do we mean when we say to a patient or family that a proposed course of action will be futile.  The authors suggest that the term may have any of the following meanings:  (1) the intervention will succeed (biologically) but the patient's quality of life will be poor; (2) the intervention will succeed temporarily, but serve only to postpone death; (3) the intervention is not likely to succeed even in the short run; (4) to the best of our clinical judgment based on the information at hand, the intervention cannot succeed even in the short term.  Consider, then, the ambiguity inherent in the unexplained declaration that a proposed intervention is "futile."

There is a second and even more critical point.  A physician whom the parents have never met walks into their room in the middle of the night and, for all intents and purposes, delivers a death sentence on the as-yet-unborn child of parents who had just recently adapted to the idea that their infant would require life-saving surgery…

Commenting on all this, co-author Theophil Stokes wonders whether 

"...a lack of empathy might be to blame. I would want to know more about her previous conversations with this family. Did she acknowledge the grief and the fear that this family was assuredly feeling? Did she find out if they had a name picked out for their infant? What was it like to learn of the omphalocele? What have their experiences been with doctors? What are they hoping for? What do they fear most?

"...In taking the time to listen, learn, and feel with these parents, the doctor lays the foundation for a relationship based on trust and a promise to face hardship together. The doctor demonstrates that she is human, that she cares, and that she will be there when times get tough…"

There are insights here that are applicable far beyond the Neonatal ICU.  For example, there are sound reasons for taking care when invoking "futility."  The term, as we have seen, can mean many things.  Further, it is all to easy for physicians to use the term as a bludgeon, to shut down dialogue, to impose our own views and ethical sensibilities. 

As important, however, we are reminded that it is not possible for physicians, families and patients to find common understanding or make hard decisions together without trust. The field of Narrative Medicine has at its core this very point…that it is in our personal stories that human connections occur, and that our values and our individuality are given voice.

Reference:

1. Feltman, D., et al; Pediatrics 133(1): 123 January 2014