Dr. Talya Miron-Shatz posted an entry on her blog Monday about the negative effect of involving families in making end of life and withdrawal of care decisions for critically ill patients in whom there is no hope for survival. She gives two examples, one of a young man terribly injured in a motor vehicle accident, the other of a very sick premature infant. In both, further intervention is seen by the medical team as futile, merely delaying the inevitable and needlessly prolonging suffering.
In her post, she cites a study which compared the reactions of parents of moribund newborns who faced this situation in the more paternalistic French medical system with those in the more autonomy-oriented American medical system, and found that the healing process was more difficult and prolonged for those families who had gone through this experience in the American system. She quoted one of the American mothers as describing participating in the decision to withdraw support from her dying child as follows: "I felt I played a part in an execution. I should not have done it". Her implied conclusion is that in situations like these, having physicians make life and death decisions without consulting with or involving the families, even to the point, she writes, where "doctors do not shun from making harsh decisions, while providing family with less information of treatment options than is common in the U.S.", is preferable to involving the families.
While I do not have the actual study available to review, I must say that I strongly disagree with this approach, for many reasons. How can a stranger whom the family is meeting for the first time (and under such awful circumstances) be expected to make decisions that befit the family's cultural, religious, moral and ethical sensibilities? Who elevated this particular physician to the status of a God, and does s/he feel comfortable with it? It should go without saying that, despite the best of efforts, physicians are only human, prone to making mistakes and exercising poor judgment more often than any of us (physicians, patients, and families) would like to admit. And why shouldn't families be given the opportunity to really understand the situation their loved one is in, to ask the medical team about the chances of recovery, survival, residual impairment, suffering caused by continuing to administer treatment(s) whose chances of success are slim to none? Not to mention the opportunity to seek guidance from other sources, be they medical (second opinions), spiritual, social?
Yes, it is very difficult for the new parents of a 25 week one pound micro-preemie still in a daze from the unexpected emergence of their child months before schedule, to process the fact that their baby has a severe brain bleed, lungs so immature that breathing is only possible with a machine, necrotic intestines necessitating being fed through a catheter snaked into a vein in the belly button, needs to be inside an incubator, blindfolded under bright lights to drive down the rapidly rising bilirubin levels. Add to these infections, eye damage, heart problems, blood abnormalities, and it becomes totally incomprehensible.
During my pediatric residency, I spent months in the neonatal intensive care unit (NICU) caring for babies just like this. It was not unusual to rush back to the NICU from the operating room with a baby very similar to the one I've just described, and, after working on stabilizing him for 1-2 hours with the attending physician, to step outside to meet with the parents and grandparents to update them. I would review the problems the infant presented with, and describe where things stood as of that moment, and what could be expected over the next several hours, explaining that this was going to be a long journey fraught with many ups and downs. After going over all of this in detail, there would be a few seconds of silence, and then, invariably the question: "But doctor, how much does he weigh"? Forget the low blood pressure, high vent settings, low platelets, brain bleed, all of these were much too abstract. Pounds and ounces, those they could grasp and understand.
But does this mean that when the bleed in the brain has progressed, the child is seizing constantly, there is now bleeding from the lungs as well, with chest tubes needing to be put in, the intestines rotting inside the belly, the blood pressure continuing to fluctuate, and the whole situation has gotten to the point where there is really not anything more that can be done to save the child, that the family cannot understand, and be part of the decision, with guidance from the medical team and others? Is it better for them to live forever with the gnawing doubt and guilt that, perhaps, had they not put such blind faith in a bunch of overworked, overtired physicians, who may have had, who knows, ulterior motives for speeding along the demise of their very ill child, that that child would still be with them, healthy, strong, beautiful and wise. If only they had fought harder for their child. If only they had not been so naïve.
There are many cultural differences between the US and France, and the explanation for the researchers' findings that Dr. Miron-Shatz cites may very well be unrelated to the differences between paternalistic or autonomy-oriented medical systems. I know that, if I should ever be in a similar situation, I would want to be treated with dignity and respect by the team caring for my loved one. I therefore consciously try to make every effort possible to treat my patients and their families in this way as well. For me, the first and most important part of this is listening, to their feelings, fears, hopes, dreams and frustrations, and to not shy away from addressing them. I feel that if a physician decides not to discuss something so central as end of life care with his patients and their families, he is essentially saying that he believes them to be incapable of expressing or contributing anything meaningful. And that, to me, is the antithesis of respect and dignity, and the polar opposite of how I believe medicine should be practiced.
