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

Physician Pay-for-performance: Does it make sense?

Physician compensation formulas that account for performance on a range of quality metrics have become commonplace, including at our hospital.  But questions remain:  do they work now?  If not, could they?  And finally, what are the unintended consequences of P4P?  Here are the arguments in brief.

P4P is a rational approach to physician compensation whose time has come.

The history of physician compensation, speaking especially of private practice models, has been all about "production."  More visits, more encounters, and more procedures meant more compensation.  Neither the quality of the work nor outcomes mattered.  It is as though a builder constructed a house with the expectation that he would get paid the same regardless of whether the supporting structures were correctly put together, or even whether it happened to collapse in a year.

The processes in Medicine, of course, relate to a myriad of interventions from primary prevention strategies in the outpatient world, to clinical practice guideline adherence on the Medicine service.  Outcomes are, as we know, a more complicated issue, but at least in principle, some kinds of complications and even patient-reported experience of care are promising.  If the organization wants to send the message that performance to particular specifications matters, then physician compensation should reflect this.

"Bonusing" physicians for providing the right care is ineffective and misguided; it's time to pull the plug.

P4P makes sense in theory.  But as the old saw goes, "in theory there is no difference between theory and practice, but in practice there is."
I was speaking with a physician from another health system about P4P not long ago. Her compensation formula has sections in it for achieving extra credit for meeting more than a dozen quality benchmarks.  There was also a component for resource utilization and one for several patient "experience of care" measures.  She admitted that she could not actually cite what all these measures were, specifically.  And with that in mind, I wondered out loud how they could possibly, even in principle, be influencing her clinical performance.  Then there is the matter of evidence.  A Cochrane database review cited in a 2013 Wall Street Journal article revealed no evidence that P4P programs improved performance at the individual physician level.

Additionally, there is the question: what should we choose to measure? Notwithstanding the foregoing issues, economics CAN drive behavior.  And the question here is whether measuring a few things distorts the process of delivering medical care by crowding out numerous, other, unmeasured clinical activities.

And finally,  there is a culture question.  What IS the message when organizations introduce P4P?  Is it that doing the right things should be rewarded?  Or is it that professionalism is no longer seen as the critical driver it has always been, and what makes us pause to be sure there isn't something we forgot to remember, something more we should be doing for our patient, the one in the bed who is our first and only concern?  Please share your thoughts.