DECISION-MAKING IN AN ALTERNATE UNIVERSE

Sometimes I feel guilty for over-relying on Thaddeus Pope’s blog. But as the Community Ethics Committee delves deeper into the difficult subject of intractable disputes in end-of-life care, there is nothing quite like Pope’s blog as a road map (www.medicalfutility.blogspot.com).

This week, he led me to a Washington State news report of the conflict arising from Catholic hospital ownership and Death With Dignity law. That is worth a look: http://bit.ly/qPnR8u

He also drew my attention to The Onion’s darkly funny report of a PVS patient running for president. Only 36 hours after watching a debate in which one Republican candidate passionately championed life and bemoaned what he sees as the social marginalization of religious faith, and another candidate decried the “anchor babies” of immigrants, I had to remind myself the Onion story wasn’t real. It, too, is worth a look: http://onion.com/nZ40W1

But Pope also made me aware of a story that is very real, closer to home, and with much to inform the CEC’s futility study: the ruling in Bonanno v. Blue Cross and Blue Shield of Massachusetts, Inc. et al.

In a ruling dated October 14, 2011, Judge Denise J. Casper of U.S. District Court in Massachusetts granted summary judgement to Blue Cross et al., which were sued by Julia Bonanno claiming she was wrongly denied reimbursement for care of her late husband, a former Raytheon employee. A PDF of the case is available here: http://bit.ly/pYdJHr

Lawsuits over end-of-life care typically are abandoned after the death of the patient, so this ruling provides a rare, clear and revealing legal look into a medical futility case, especially the role of an insurer and the place money holds in the equation.

The ruling doesn’t provide any sense of the relationship and communication between the patient’s wife and doctors, and perhaps that is because it was not the doctors or hospitals that were sued. And yet, the judge ruled for Blue Cross because its decision was seen as consistent with diagnosis and prognosis, and therefore was neither arbitrary nor capricious.

Under the Raytheon health plan in question, employees were entitled to "medically necessary" services, with Blue Cross authorized to judge that necessity. Medically necessary services are described as diagnostic or therapeutic efforts "essential to improve [the participant's] net health outcome ... (and to be furnished) in the least intensive type of medical care setting required." These services also needed to be “as cost effective as any established alternatives." 

Notably, medically necessary services were not  "furnished solely for [a participant's] convenience,” for “the convenience of [a participant's] family or health care provider,” or to increase or enhance “environmental or personal comfort." 

Raytheon employees were not covered for “custodial care,” defined as care “given primarily by medically-trained personnel for a member who shows no significant improvement response despite extended or repeated treatment; or care that is given for a condition that is not likely to improve.”

One of the challenges in the CEC’s futility study is to better understand the patient/family perspective. In each case, it’s a deeply personal and painful story; telling it to a committee of strangers is not an inviting prospect.

We recently heard the story of an infant’s slow and torturous death, and got a sense of the alternate universe and “new normal” a family is thrown into. In retrospect, different decisions, aided by clear communication from doctors, might have made a difference in a legacy that remains painful for the parent years after the fact. But retrospect is always too late to be of use.

Finally, Pope also provided this brief update: “Several weeks ago, I blogged about the case of Jesus Cornelio. His wife had alleged that doctors at Banner Good Samaritan Hospital in Phoenix told her that after an aneurysm damaged her husband's brain he would never wake up.  She said that they presented only two choices: (a) have Jesus deported to Mexico, or (b) withdraw life support. Ultimately, neither of the courses of action was pursued. Jesus has since improved and is now being discharged.”