Doc, What Would You Do If This Were YOUR Father?

When families are faced with decision making at the end of life, the physician is there to provide accurate medical information, to serve as a resource, and just possibly to be a shoulder to lean on.  Is it "best care" for the physician to also share his personal opinion about what he would do...about the dialysis, the ventilator, or the vasopressors?  Or is this too intrusive or otherwise "out of bounds"?  In the December issue of the journal Pediatrics, several bioethicists opine on whether a neonatologist is acting in the best tradition of the profession...or not...when he makes a specific recommendation - against tracheostomy - in the case of a three month old neurologically devastated, former 23 week premie, emphasizing to the family that this child will never communicate meaningfully, enjoy most of what children typically experience, become independent, or live other than on life support in a perpetual state of chronic illness (1).

By and large, ethicists oppose a "directive" approach that effectively substitutes the values and preferences of the physician for those of the patient or his decision-making Agent.  The argument is that such a paternalistic approach is objectionable exactly to the degree that it infringes on the autonomy rights of the patient. In the same paper, a commentator suggests that a directive approach can be ethical if, and only if, four criteria are met.  As they apply specifically to the care of the infant in the above case, I will generalize them for our purposes: (1) how certain is the prognosis?...(2) how certain is the negative effect on the patient's and family's life if the life extending intervention is pursued?...(3) is the family adequately informed about the options?...and (4) will the physician's directive approach damage the physician-patient relationship? By this view, a directive approach will not pass muster if it fails any of the above tests.

On the other hand, there is a principle known as the "best interest standard" (BIS) that has been endorsed internationally as foundational to the ethical care of children.   The treating physician needs the permission of the child's parent to render major medical care, but he is ethically bound to refrain from seeking permission to carry out interventions that fail the BIS.  To some degree, this concept stands in opposition to unrestrained parental Autonomy and offers acknowledgement of the physician's own ethical values and responsibility.  

The pediatric case study cited above is both different from and similar to the situation in the adult ICU, where the intensivist is treating, for example, an 80 year old retired attorney with CML and multi-organ system failure.  The medical facts are different, of course.  The infant may (or may not) live for years on end after the contemplated tracheostomy, while the elder patient's lifespan is sharply demarcated.  One patient faces a potentially long but severely limited life, while for the other, the question is not whether the patient will die, but how.  In both cases, however, a "best interest" consideration arises.  Ethical distress, occurring when health professionals feel powerless to avoid inflicting unhelpful, injurious interventions on their patients, affects many nurses and physicians working in Critical Care settings and elsewhere.  Does the best interest standard, as it exists in the field of Pediatrics, have a parallel in adult Medicine?  Should it?

Arguably, this issue can be understood as a restatement of the "futility" problem. The narrowest definition of futility is applicable to interventions that will not achieve the desired biomedical goal (such as defibrillation restoring an effective cardiac rhythm).  There is strong consensus that the physician is not only entitled, but also duty bound to refrain from administering treatments that are known to be ineffective.  A "best interest" standard correlates better with a broad definition of futility that categorizes as inappropriate interventions that achieve physiological goals but fail to restore the patient to a state of health that is consistent with a "reasonable" quality of life, physical independence or, in some cases, personhood per se. On the other hand, broad definitions of futility face criticism from those who would argue that patient's values and preferences (and not the physician's) should guide decision-making when the issue is "quantity vs quality" of life.

There is also the issue of "quality of death."  When the condition is clearly terminal, and ongoing treatment is clearly burdensome to the patient, to what degree should Autonomy considerations (expressed through third parties who may or may not be capable of representing the patient) outweigh and over-rule the judgment of the healthcare team?  Shouldn't incapacitated adult patients also have the benefit of care from physicians who comply with a "best interest" standard? And if this is so, should the family not, at the very least, have the benefit of the physician's opinion?

What do YOU think?  Write to this blog.  Let's start a debate for 2017.

Ref: (1) Blumenthal-Barby J, Loftis L, Cummings CL, et al. Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment?. Pediatrics. 2016;138(6):e20162585