Friday, May 25, 2007

Guest post by Skylanda: One more word on Baby Emilio and the Texas futility of care law

The recent death of Baby Emilio - first and foremost a beloved though very ill child, secondarily the test case for the Texas futility of care law - forces a re-examination of the intersection between ethics, health care finance, and since that's not complex enough, the differential value of life in the context of a world that still doles out merit points based on race, origin, and membership to a class that can pay for private medical insurance in one of the few industrialized nations that still allows vast numbers of its own citizens to go without.

As a health care worker, I sympathize with placing limits on futile care. Doing time in the ICU, I've seen innumerable cases where family choices for a dying and incognizant loved one were misguided at best and self-indulgently cruel at the worst - an elderly women with metastatic breast cancer in the dying throes of septic shock whose family wanted to know when the next round of chemo was to begin, a young man with motor vehicle injuries so severe his only brain activity was relegated to the grand mal seizures he succumbed to every time his sedation was lifted enough to run a useful EEG whose family refused for weeks to let him go. Give anyone on the blunt end of an intensive care shift a couple of beers and they can haul out half a dozen stories like these. And though the health care professionals who choose this field are obligated and skilled at performing many unpleasant tasks, it is beyond their calling - and ethically unconscionable - to ask them to repeatedly perform acts that are rooted in causing suffering without measurable gain to the patient anywhere in the equation.

But no health professional is a monolithic care provider alone. Last summer, in a guest spot here at Echidne, (scroll down to my post most of the way down this page) I wrote about a little girl who suffered from a profound lung injury during a bone marrow transplant gone terribly wrong; that little girl was my niece, and at the time I hit the "post" button, she was eight weeks into her ICU stay. Half a dozen times, when her blood pressure bottomed out, or when her chest x-rays looked particularly gruesome, or when some resident had to crawl out of bed at an ungodly hour of the night to poke yet another hole between her ribs to thread a chest tube into her frail body, the doctors on the service asked my brother and his wife to withdraw her care. She was too sick, they said. Other children that sick have not made it, there is no reason to think she will. The odds are so stacked against her...even if she survives, she has probably stroked out during all those episodes and there may be nothing there to wake up to. Her care, they argued, was futile.

Another eight weeks into her ICU stay, she was just stable enough to lift the sedation. She awoke, slowly, over a period of weeks, and she began to communicate. Five months after the crisis began, she left the ICU for a rehabilitation floor and began a long convalescence. On February 1st of this year, she went home to live with her mommy and daddy and baby brother again, physically disabled from her long stay in bed but growing stronger every day, and with no discernible cognitive impairment. She'll start school again this coming fall, perhaps even with the second-grade classroom of kids she left when she fell ill a year and a half ago; the only obvious marker of her four months rapping at death's door is the thin plastic line that runs between the tracheostomy hole in her neck to the oxygen machine she still relies on to get her through the day.

Needless to say, your worldview gets a weird little tweak when the universe hands you a big fat smoochy miracle. We won the karmic lottery - with every statistic against her (only 3% of bone marrow kids who go into the ICU come out alive; only a quarter of the kids who come down with one of the vicious viral infections she suffered from respond to treatment; and on and on), she pulled through, egged on by some truly spectacular care and some wildly dedicated parents who would hear nothing of "futility" and "withdrawal of care."

So. Sometimes forcing the withdrawal of care against family wishes is an act of mercy. Sometimes it's closer to murder. Most of the time, one cannot tell without being right in the thick of it which is closer to the truth in any given case, and sometimes even from that vantage the truth is obscured by conflicting realities. Media coverage rarely tells anything like the whole story - especially given the draconian privacy directives of the HIPAA law, which allows involved individuals to disclose information at will but muzzles hospital staff, thereby biasing media reports heavily toward the only side that is allowed to tell the story.

But there are a few things that need to be sorted out in every case like this. One is that finances need to be both a fundamental consideration in care algorithms at the planning level but entirely extricated from decision-making at the individual level. A health care system needs to decide how - or perhaps if - it is going to finance resource-intense cases like premature babies, traumas with lengthy convalescence periods and questionable outcomes, high-morbidity cancer cases, and the like. Once the tough decisions are made (and make no mistake, they are tough...try this one on for size: should a 23-week preemie, at the very edge of viability, be revived and sent to the NICU or considered a tragic but conclusive miscarriage?), they should be applied evenly across the board. Rich or poor, black or white or Hispanic or otherwise, privately insured or on the Medicaid roles, the rules need to apply to everyone.

One of the most disturbing aspects of Baby Emilio's case was the racism and anti-immigrant sentiment that oozed out of the woodwork. When Blue Lily's blog, The Gimp Parade, was linked from an AOL story, the commentary that escaped moderation on this topic ranged from point blank questioning on whether this kid was "illegal" or not (answer: mom's family has been in the US for generations) to tirades about who "deserves" to access the public dole. But guess what, folks? Anyone who undergoes expensive medical treatment is a drain on the system. The pretense that the payment of a few premiums into a Blue Cross account prior to your life-threatening motor vehicle accident puts you in a financially less leech-like position than the kid who just crossed the desert in his mom's belly to be born into a NICU in a border-town hospital is a happy delusion designed to make the privileged feel less edgy about the entitlement to care we receive as a member of the somewhat arbitrarily designated class of "insured" people. In fact, no insurance premiums that you will ever pay will cover a million-dollar hospital stay - under our current system, even private insurance is still very much a public good: your expensive hospital stay drives up premiums for your coworkers, your neighbors, your family, the next state over. Emilio on Medicaid was no more a drain on the system than a cancer-ridden CEO with the fattest private insurance policy on the market, because all of these are billed to a collective pool that some group of Americans are kicking into and will have to cover. No one pays for this kind of stuff out of pocket because no one short of the Bill Gates social strata can pay for it out of pocket. For example, my niece's first medical bills - for an ICU stay and induction chemotherapy - topped out at around $100,000, billed to the military's Tricare system in deference to my brother's recent return from Iraq; after the bone marrow complications began and she was transferred to the Medicaid system, the hospital quietly stopped sending bills home at all, so we have no idea what the final total was, but the best guesses range up into the $1-2 million realm. The fact that she is white and middle class and so darling (don't make her adoring aunt bust out pictures!) she could charm the socks off the most hardened able-ist bigot does nothing to change the fact that she drew just as much off the regional Medicaid budget as a poor Hispanic kid named Emilio. The fact that this price turned out to buy her life back was a roll of the dice none of us could have predicted - at the time, one could have argued against her care the same way they argued against Emilio's: futile. Too costly. Time to face the harsh reality of life and let her go.

Most of us will become disabled at some point in our lives. Unless you are hit by a bus and die at the scene, or suffer a fatal heart attack without years of prodromal symptoms, or find some equally precipitous way to go, most of us Americans will eventually draw off the intensive, expensive care provided by the US medical system as we grow older and ever more impaired. The question of futility of care needs to be a balance of mercy and love in an imperfect system that sorely lacks the resources to give indefinite life to everyone - but it needs to be divorced from the idea that some do and some do not deserves it and the delusion that some are paying for it themselves just because they kicked in a couple hundred a month in insurance premiums for a few years.

Despite every mixed feeling I have on forcing doctors to continue futile care for terminally ill individuals, I for one am glad to hear that this child died not from care withdrawn but under as natural circumstances as possible; the family has been through enough, and the trauma of this very public episode is certainly not going to come to a close just because Emilio's life has ended. His mother deserves whatever peace she can squeeze out of this unhappy circumstance. Instead of sniping at a desperate mom, maybe we could each take a moment to be thankful for not being in her shoes: there but for the grace go we.

Posted by skylanda.