Anecdotal Evidence

The headline stood out for me at the bottom of the front page of Friday’s paper: “Severely injured brain still shows responses.” My initial response was, “Oh, [expletive deleted].”

The story is interesting, of course, and pertinent to my practice and experience as a hospital chaplain. You can read it here or here, or any number of other places. A woman in England suffered a traumatic injury to her brain. After five months in a coma she made a transition to a persistent vegetative state. I note “made a transition” because there is a difference between coma and a persistent vegetative state. When examined at the bedside, the patient’s responses to stimuli were consistent with persistent vegetative state. However, when doctors put her through functional magnetic resonance imaging tests (fMRI), her brain showed some response to sounds, and from the evidence it appeared she was responding to specific words. The areas of her brain that responded were those that we would expect to respond in a conscious, thinking person. The suggested interpretation is obvious: that she still had come ability both to hear and to comprehend words and ideas – that perhaps she had some capacity to think. In her case – I emphasize, in her specific case – the bedside examination didn’t give enough information about the function of her brain. Since then it is reported that she has shown some further change, including possible physical responses that could be seen at the bedside, suggesting that she is changing again from a persistent vegetative state to a minimally conscious state.

My initial response was not out of any disappointment for this specific patient or her family. Nor was I concerned about whether or not this was a miracle. I’ve been a chaplain a long time. I believe in miracles, and I think I’ve seen more than my share. Most important, I am not opposed to hope.

However, this person’s individual change, miraculous as it appears, will complicate decisions for many patients and families. Families have difficulty understanding the differences between “coma,” “persistent vegetative state,” “minimally conscious state,” and “brain death.” Indeed, since medicine is as much art as science, individual physicians will differ on diagnosis, based on the available evidence. At the same time, physicians will not disagree that these are specific technical diagnoses, with different characteristics, and, most important, different probably outcomes.

Physicians, too, have awareness of different types of injuries to brains. There are many stories in the literature of people who have recovered from traumatic injuries to the brain. Much more rare are stories of meaningful recovery for patients whose brains went without oxygen for any period of time. The same is true when there have been significant swelling of the brain, or significant atrophy of the brain (loss of brain tissue and mass).

That’s where things get complicated for families. There are cases – rare cases – of patients in comas, even for long periods of time, returning to consciousness and to some level of function. I have not seen nor heard of cases of recovery from brain death. I have certainly had families ask me about coma in patients who are brain dead. I have had to tell a number the same thing: “I believe in miracles. I have seen miracles, and I don’t say there’s anything that God can’t do. I have never seen nor heard of anyone coming back from this.”

Families will want reason to hope. Physicians can give “best medical advice,” basing that on their own experience and on their reading of the medical literature. But families will want reason to hope. Comparisons of this case with the case of Theresa Schiavo have already been made. In fact medically the cases are quite distinct, and the physicians in England have said so. But the image of her parents, holding out for years, against the evidence and against “best medical advice,” will haunt many. Requests for additional tests, and especially for this test, will probably increase. That’s not altogether a bad thing, but it is not likely to change things in many cases.

Should this be news? After all, this is not the result of medical study. It is an individual case. It is anecdotal evidence, if documented better than usual. Who benefits from mass media attention to this? The media outlets, of course: this fits well the adage, “If it bleeds it leads.” But the effect I fear on families and on health care providers will not be a benefit. Patients who are not like this patient will go through tests that tell us nothing new, and that only delay a family in making difficult decisions and entering into grief. Physicians will feel pressed to offer tests that do not benefit the patient, and that add to the family’s expense. This will get attention, but will not change the course of care, or the outcome, for most patients.

And as one whose job includes walking with patients through those difficult decisions, down that path of grief, it will complicate my job. If nothing else, it will add sadness: my own sadness and the sadness of other caregivers as we watch families struggle and delay and hope against hope. And it will add to the sadness of those families, because in the end their loved one is not in a situation at similar to this English woman’s. We will do our best to educate those families, to tell them what we see, to tell them what is our experience and what is in the medical literature. But in the end patients who are already with God, who are simply being held while families struggle, will remain suspended, lost to their families but not gone; not beyond our care, but ultimately beyond our help.

May God bless the woman and her family, and those who care for her. May God bless those few patients whose situations may be sufficiently similar that fMRI can show change. And may God bless the many who will be caught up in hope and delay, wishing that the situation were sufficiently similar when it is not; and all of us who will care for them. These last, I fear, will be by far the majority.