Maybe it's my fault you don't know what you want

One of my first ICU patients went to the OR for her final surgery. The next day, I returned to her room to find an empty bed, crisply made with thin white bedclothes that emphasized the bed's right angles and hard edges. The bed looked so small without my patient's bulk, grossly swollen from head to toe. The room seemed bare without the many monitors and machines connected to tubes and sheaths inserted into her every major orifice, vein, and artery.

My patient was a middle-aged woman with multiple co-morbidities (i.e., several chronic diseases) who had suffered a major heart attack with nearly complete multi-organ system failure. We managed to keep her alive for 21 arduous days through multiple cardiothoracic surgeries and a rarely but increasingly used means of life and organ-system support. She was heavily sedated during this time, although continued to grimace when her endotracheal (airway) tube secretions were suctioned.

Her fate was a foregone conclusion before I met her, yet our team worked hard to keep her alive. I gently questioned those around me to gain insight into why this woman had been singled out for this particular rare and costly intervention, as well as whether my impressions of her poor prognosis were overly pessimistic. I learned that my impressions were realistic, but no one explained why this woman had met her machine-driven fate when most in her position simply die, with sudden, brief illness and stories left largely untold.

The day she left for her last surgery, my prodding revealed a new answer as to why she had found her way to this rare path. "Because her family wants it, and they have a right to have the care they want because they can afford it." If her family had truly understood the patient's grim prognosis, would they have asked for this care? Would they have chosen this path if they had realized how many invasive procedures and interventions their wife/mother/sister would bear over the next few weeks with severely limited chances for a reasonable recovery?

I'm dismayed that her family, like others with loved ones in hospitals across the nation, lacked understanding of the health care services they thought they wanted. Families tend to hope against all odds that their loved one will prevail in the face of long odds for recovery. Given this assumption, I think it's the job of health care providers to set reasonable therapy goals and to be honest with patients and families about what medicine & surgery can and cannot do. Overall, we do a poor job in this regard, both in critical care and more run-of-the-mill cases of disease. Barring a multitude of miracles, my patient never had much (any?) chance of survival. I can't estimate what she felt or perceived during those three weeks that machines kept her alive, yet it still seems less humane than the lower-tech alternative course.

I do admit that exploring new frontiers in medicine, however likely to fail, can lead to major discoveries that bring effective new therapies to the masses. At the same time, it seems shameful that we poured so many resources into one patient with virtually no chance of survival when we deny cost-effective care to poor children who have a virtually 100% chance of living for many more years. This dichotomy should unsettle us all, yet most who find themselves or a loved one hospitalized with the sequelae of decades of chronic disease usually agree to expensive heroic measures that aren't likely to work.

Surely there will be revolt if/when ObamaCare deprives us of what currently amounts to a right to extensive health care regardless of its expected efficacy. I think this revolt will be warranted since, as history suggests, the rule-makers likely will not have the clinical expertise to make sensible rules. Right now, however, it seems that a few limits wouldn't be such a bad thing. Wouldn't it be nice if health care providers could work with patients to set reasonable limits on our own?