We've watched it many times on television or in a movie: The patient lies in the intensive care unit, gravely ill, with the family at the bedside. The doctor walks into the room and asks, "What do you want us to do?" The family is automatically placed in a very awkward, difficult position. If they tell the doctor to keep mom comfortable and let her die, they will feel as if they are responsible for mom's death. In fact, some of them will feel like they are killing their loved one. There may be differing opinions among family members. Perhaps one daughter has been close to her mother during a long decline and has already reached closure. On the other hand, there might be a son who arrived from out of town, who had been estranged and now feels like he'll never have a chance to reach closure. When the doctor asks, "What do you want us to do?," he opens up a huge can of worms that is, in fact, ethically incorrect.
The first priority that a physician has is to their patient. We take great pains in our society to respect a patient's privacy. We encourage patients to fill out an advance directive or durable power of attorney for health care in order to ensure that we respect their wishes. Yet in the rush of events that typically occurs during an acute change of condition, this is often forgotten. One of the major mistakes that physicians make is to ask the wrong question. Once this occurs, there is a domino effect that follows. The daughter who had already achieved closure now feels responsible for making such a momentous decision and begins questioning her own motives. The estranged son is even more empowered to push for aggressive treatment of his mother. The rest of the family will get bogged down in the interfamily drama. What about the patient? Isn't that where the focus should actually be?
A recent study published in the New England Journal of Medicine, "Hemicraniectomy in Older Patients with Extensive Middle-Cerebral-Artery Stroke" (NEJM 370:1091-1100, March 20, 2014), demonstrates why this continues to be a serious issue in the health care world. The authors of the study conclude that an invasive and disfiguring procedure "increased survival without severe disability among patients 61 years of age or older with a malignant middle-cerebral-artery infarction." What is mind-boggling about this statement is that 60 percent of the patients who underwent this procedure were left with moderate or severe disability, requiring assistance with most bodily needs. Ironically, only 28 percent of patients in the control group were left with moderate or severe disability. Of course, the reason for the profound difference is that 70 percent of the control group died. The authors stated that the surgical outcome was "favorable" but chose not to discuss whether it was "acceptable," saying that was beyond the report of this clinical trial. In my opinion, avoiding this issue goes against our Hippocratic Oath and severely calls into question the validity of this study.
One of the problems that we face in evaluating quality of health care treatments is whether mortality is always an unfavorable outcome. In the case of this study, it would be easy to make the case that death would be preferable to being moderately or severely disabled with the "open half of their head sagging grotesquely, with brain pulsations seen through the skin" (editorial by Allan H. Ropper, M.D., NEJM 370:1159-1160, March 20, 2014). But that question was probably not posed during randomization into this trial. The appropriate question under these circumstances is to ask, "What would Mom want?"
Let us revisit the situation in the intensive care unit. The doctor enters the room, describes the situation to the family and, in the case of the aforementioned New England Journal of Medicine article, tells the family that their mom has no chance of surviving with anything less than moderate disability, no matter what course is taken. However, if they choose to do a very aggressive and disfiguring procedure on her skull and brain, they can double her chance of survival so that she could have a 60 percent chance to live the rest of her life with moderate or severe disability. On the other hand, if they focus only on comfort, she will have at least a 70 percent chance of dying peacefully.
There are obviously a multitude of other factors that will ultimately go into the final decision: What was the patient's quality of life and function prior to this event? Had she specifically told any family members about her feelings about being disabled and requiring significant care and assistance? Over the years, I can say that the vast majority of my older patients have clearly told me that they never want to be a burden to their children and that function and quality of life are the hallmarks of any treatment decisions that we make. This is one of the reasons that I have actually referred 98-year-old patients for hip replacements. They chose to accept the risk of death in return for the opportunity not to be wheelchair-bound. Ultimately, we must be guided by the wishes of our patients.
This post originally appeared on Altarum's blog, Health Policy Forum, on April 24, 2014.