ADVOCATE: A FRIEND IN NEED

Advice for choosing an advocate, from Judy Bachrach’s column today at obit-mag.com (http://bit.ly/rAmLCg):

“Whomever you decide on: Make sure a) you inform that person of your decision when you make it; b) don't be upset if that person declines to be your Power of Attorney (a lot of people can't take that kind of responsibility); and c) be positive this person will respect your wishes in the event of an illness or medical emergency.

   

“In other words, should worse come to worst and you don't want intubation, resuscitation or other medical intervention to prolong your existence -- be certain whomever you pick is in agreement with your wishes. Also, make sure that in the event your competency diminishes and you are unable to articulate your wishes, a copy of your living will is in the hands of that friend. 

“Doctors and hospitals have a way of ignoring advocates, but the one thing that gets to them (often) is an executed legal document.”

Bachrach’s preference for an advocate: a close friend.

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.”

Definitional Futility

One of the first things the Community Ethics Committee agreed on about medical futility is that the term itself is unhelpful. It’s cold, clinical and one-sided, and has a clarity problem, too. 

Most such end-of-life scenarios that descend into intractable dispute stem from disagreement over the medical judgement of futility -- but not all do. There are cases of “reverse futility,” which really aren’t about the denial of futile care at all. In these cases, medical staff somehow transcend patient or family opposition and proceed with therapy.

Futility cases typically end in the patient’s death, with court proceedings abandoned. But two cases this summer both were resolved in court, one after the death of the patient, the other in which the patient survived. Both involved, not futility, but therapies delivered against stated wishes. And both claimed malpractice.

In Jones v. Ruston Louisiana Hospital, daughters of a man who died more than two months after a major cardiac event sued the hospital for ignoring a do-not-resuscitate order. A lower court ruled that unwanted resuscitation was not medical malpractice, and did not meet a requirement for medical review. An appeals court agreed.

In DeGeronimo v. Fuchs, a New York woman in her mid-thirties sued for having received an allogenic blood transfusion against her wishes and Jehovah’s Witness faith. The woman had gone out of her way to find a doctor to see her pregnancy through and respect her faith-based wishes, but complications following childbirth included surgery and life-threatening blood loss. For reasons related to the pregnancy, none of her own blood had been collected.

The court said it was clear that the transfusion had saved the woman’s life, that her husband had signed off on the life-saving measure, and that the woman herself had nodded consent “in extremis,” though she had no memory of this afterward.

The court found “no precedent for finding medical malpractice when a blood transfusion was the proximate cause of saving a life ... There is no cause of action for ‘wrongful life’ in the state of New York.” Instead of malpractice, the court said, the plaintiff should have sued for battery.

On the legal scholar and medical futility expert Thaddeus Pope’s blog, where I learned of these cases, a commenter said: “In the Jehovah's Witness ruling, what stood out to me was the issue of capacity and the ethics of ‘re-consenting’ a patient and surrogate in extremis. ... Is a policy of required reconsideration for Jehovah’s Witness patients in life-threatening situations fair to them? If it is, then more thought should be given to the timing of these conversations. Having been involved in similar situations to this case, it is very easy to believe that both the physician's account and the plaintiff's non-recollection of the conversation were honest.”

I’d be interested to learn about other instances of “reverse futility.”

Lancet, Futility & Prematurity

I’m not sure what to make of the word premature. It was simply creepy during late-night viewings of Ray Milland in “Premature Burial.” Monty Python made it funny with the “not quite dead yet” scene in “The Holy Grail.”

Then my daughter was born a month early and they called her premature, which was absurd to me. I was in my forties and a father for the first time, so to consider her early made no sense on my watch.

Recently, premature threw me another curve. I’ve been reading and rereading a lengthy Lancet Oncology Commission report, as background for the Community Ethics Committee’s study of medical futility.

The Lancet study (Delivering Affordable Care in High-Income Countries, September/October 2011) shines light on aspects of end-of-life care that can derail honest dialogue -- notably cost (economic and otherwise) and rationing. This is the stuff of “death panel” paranoia. But delivering health care that society and individuals can afford is so urgent that any honest assessment must take them into account.

Not all medically futile cases that descend into intractable dispute between doctor and patient/family can be traced to a moral gap between science and religious belief, but many can. Which is why this phrase in the Lancet report caught my eye: “the worldwide cost of cancer due to premature death.”

Simply agreeing on a definition of “premature death” might itself be futile. Is it simply life that ends earlier than expected from other than natural causes? Premature death has meaning in a medical sense, but what is its meaning in a religious sense? And do the definitions share any connective tissue whatsoever?

In attempting to understand medical futility, I studied (mostly through newspaper and online reporting) the case of Samuel Golubchuk, an elderly man in Winnipeg, Manitoba, who had suffered serious brain damage and whose condition was diagnosed as irreversible. Lacking therapeutic or curative options, and questioning the continuance of more than comfort care, ICU doctors wanted him removed from life support.

Golubchuk was beyond speaking for himself, but his adult children argued that to discontinue life support would go against the man’s lifelong religious beliefs as an Orthodox Jew -- specifically, the teaching against hastening death. But in that tragic case, which over time resulted in half the physicians on a small ICU staff resigning rather than continue treatment they considered to be torture, it seems never to have come up that Judaism also teaches against prolonging the dying process.

Many religious believe time of death “is written” -- that God knows when death will occur, and humans shouldn’t interfere. If that is true, how can anyone know when medical life support is appropriate, or when it merely prolongs dying?

Cases such as Golubchuk’s are relatively rare, but they are enormously harmful to families and caregivers in dispute -- not to mention the unresponsive patient made to endure the “care.” The disputes tend to be resolved only by the patient’s death, as was the case with Golubchuk.

It pained Golubchuk’s attending ICU physician that the family’s religion-based demand to continue life-saving efforts seemed to have no regard for prognosis. The physician’s options became to “do harm,” or to resign.

There is nothing premature about the Lancet Oncology report’s main point: that the cost of cancer care is unsustainable. It would seem modern success at cure and care is making us more selective with both.

More on the Lancet report will follow.