Distinction without a difference? Guidance from the NCBC

Last month the National Catholic Bioethics Center posted an article that was meant to guide Catholic clinicians on what to do when a patient or proxy or government requests treatment that the clinician considers to be morally wrong [“Transfer of Care vs. Referral: A Crucial Moral Distinction”]

The subject is important and timely, and I looked forward to reading the piece, but unfortunately it misses the mark when it comes to issues where withholding/withdrawing treatment and palliative care would be involved.

1) The first few paragraphs imply that the immoral act in question might be an act of withholding/withdrawing treatment, so I expected the authors to give advice to the poor clinician who is being pressured to withdraw life-saving treatment. Instead, the authors write three paragraphs to reassure the clinician that “no treatment at all” can be a “reasonable and morally legitimate alternative” and “should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.” (They don’t elaborate on what might be “contrary to Catholic moral teaching”). So while the authors pretend to be concerned about a patient’s right to life-saving treatment, they are really more concerned about justifying withdrawal of treatment.

This discussion might have been relevant thirty years ago, but in the new world of accountable care organizations, where the physician will be held accountable for what group will get which “scarce resources,” the concern about the patient’s right to “no treatment at all” is passé.

2) The fine distinction between “formal cooperation” and “material cooperation” escapes me, but I gather that “material cooperation” is a bit like double effect: it hinges on the intent of the cooperator. That gives the cooperator a little wiggle room.

3) There seems to be an underlying assumption that if the patient is transferred to “ethical palliative care” (usually meant in a hospice or end-of-life sense) then all is well. Even if, miraculously, thousands of “ethical palliative care” practices sprang up all over the country overnight, what would a referral to an “ethical palliative care” practice mean in the context of the new continuum of care established by the Accountable Care Act and regulatory agencies?

Who will be referred to palliative care in this new normal? A report released yesterday by C-TAC provides a new diagram of where palliative care fits in “the continuum of care.”

C-TAC’s illustration of palliative care’s role in the “continuum of care”

The diagram illustrates how far we have wandered from the palliative care associated with hospice and end-of-life. Palliative care is now supposedly the care of choice for most of the population:

(That’s a pretty lucrative market.)

The Clinical Practice Guidelines for Quality Palliative Care identify a very broad group of palliative care prospects, some of whom we might not want to subject to repeated end-of-life conversations, or to subtle shifting away from ordinary care: families of neonates with “developmental and intellectual disabilities” who develop serious illness; as well as “vulnerable, underserved, and under-resourced populations who develop serious or life-threatening illness….” (my emphasis).  When the Guidelines were first introduced, one of the people involved in their development wrote that the role of the guidelines was to facilitate “good healthcare [which] requires continual re-appraisal of useful and non-beneficial therapies….”  She went on to list populations that would be targeted. First on the list: “Children and adults with congenital injuries or conditions leading to dependence on life-sustaining treatments.”

When “the system” (electronic health records, case managers, Medicare/Medicaid, government regulation, The Joint Commission) dictates that a patient be referred or transferred to palliative care consultation at the first diagnosis of what “the system” considers a “chronic condition”, how will the Catholic palliative care team handle the referral? Will the palliative care group accept the patient, even though the team is reasonably certain that end-of-life care will not be needed for many years to come? How far will the palliative care group be willing to go to combat “the system” that will try to convince the patient and/or family to remove life-sustaining treatment prematurely? Will they go to bat for the patient/family, or meekly hand off the patient to another group?

All in all, I felt as though I was reading an article that had been written thirty years ago.  The principles are timeless; but when it comes to the issue of withholding/withdrawing treatment, the standard examples are irrelevant if not misleading.