This is my third and final reflection on the book Cheating Death by Dr. Sanjay Gupta. You can read the earlier reflections here and here.
There is another ethical issue raised by Dr. Gupta's book, if not by Dr. Gupta. It is really corollary to the others, and yet perhaps the most important. Certainly, it's the issue that affects the most people.
We have been talkinq about, and at times wrestling with, ideas of the "good death" and the right to die. That has been based first on a recognition that everyone dies.
Notwithstanding the title of Cheating Death, Dr. Gupta acknowledges that death is inevitable. Even the best techniques we have, including the cutting edge treatments in the book, can only delay death, can only forestall death at one time from one event. So, if we're going to play out the gambling metaphor, we might "cheat" death today, but eventually the "House" always wins.
That said, you might not get that from the book. It's true that Dr. Gupta acknowledges this fact, if only late in the book, and perhaps somewhat grudgingly. However, I don't know that you'd get that from any of the physicians profiled in the book. Consider the comment from Dr. Lance Becker of the University of Pennsylvania, who considered the thought that the patient hasn’t died until “the doctor gives up.”
That's not a new attitude, really. However, it's an attitude that has fallen out of favor. For some time now we have been seeking to understand and to provide for patients "a good death." While that might look somewhat different for each individual patient, it includes a respect for the patient's choices, a commitment to the patient's comfort, and support for the patient's family and network. Most important, it includes the recognition that each of us will die, and that the point will inevitably come when that is beyond the control, beyond the decision, of any physician (or anyone else, for that matter). This has been fundamental for the growth of hospice and palliative care. Especially, it has been fundamental for the education of physicians to make use of hospice and palliative care orders.
So, what about physicians who are convinced that a patient isn't dead until the doctor decides to "give up?" And what about the reading public that sees those headlines?
There are two sorts of trouble associated here. The first is simply that even aggressive resuscitation physicians such as Dr. Becker actually know what Dr. Gupta acknowledged: at this point we only delay death, we don’t really “cheat” it. We can increase survivability of particular events, at least under the best of circumstances. We can extend individual lives, and we can raise the average life span for our population; but I don’t foresee any time soon that we’ll actually have to deal with the ethics of people not dying of “natural causes,” much less of traumatic causes.
The second is that for much of the reading public “the best circumstances” are simply out of reach. I don’t mean economically out of reach. I mean physically and geographically out of reach. Major medical research centers are doing research, making breakthroughs, and establishing new standards of care. But, an awful lot of folks don’t live within reach of a major medical research center, much less the few centers (perhaps the one center) doing research on their individual problems. How are we going to offer breakthroughs to them? And, of course, in fact they are economically out of reach as well.
But more basic and more troubling in all of this is the simply question of how much care is enough, and how much might be too much? Will new tools and techniques give new impetus for a resurgence of these opinions? Will these opinions multiply cases like Terri Schiavo and Sam Golubchuk, in which families pursue health care in the face of medical evidence that it will be futile?
Let’s take, for example, the researchers using functional magnetic resonance imaging (fMRI) to study patients in vegetative states. While Dr. Gupta does make reference in the book to early studies, and to the changes they have suggested, the issues have gained new attention recently with the publication of a new article last week in the New England Journal of Medicine. Titled “Willful Modulation of Brain Activity in Disorders of Consciousness,” the article has been noticed by the Washington Post and the Wall Street Journal. In the study 54 patients with severe brain injury were studied – 23 in a vegetative state, and 31 in a minimally conscious state. They were also compared to 16 healthy control subjects. Functional MRI allows researchers to observe in real time how, and especially where, the brain is using oxygen. Based on previous studies, and confirmed by the control group, the researchers had an idea of what parts of the brain were normally involved in visualizing and imagining various kinds of tasks. They asked each subject to imagine specific tasks, such as hitting a tennis ball with an instructor, or navigating their way through a known town. They then asked subjects to answer Yes or No questions, using one visualization for Yes and another for No.
The results were interesting, if small. Of the 54 injured patients, five appeared to have a willful response to the instructions to imagine. If the five, only one was able to respond to Yes/No questions as instructed.
So, what does the study tell us? First, it tells us that further studies are possible and possibly worthwhile. Second, it tells us that the tool of fMRI can give us further information about what might be happening in the brains of patients so injured that they are either in minimally conscious or vegetative states.
It also suggests that 90% of the time the physicians were right in assessing that these patients were not conscious and not able to respond meaningfully to stimuli around them. While this is an interesting and possibly important study, it doesn’t really change what we knew about 49 of these 54 patients’ consciousness, or about their likelihood of returning to consciousness.
This study also caught the attention of Religion Dispatches (and subsequently of my colleagues at the Episcopal Café), for presented the unfortunate headline, "When Are You Dead? Science Just Made the Work of Religion a Bit More Difficult.” The reason I think the headline unfortunate is that it speaks to me of just the sort of leap that some patients’ families might want to make based on this study and earlier research. It begins with a point of confusion. No one believes that patients in minimally conscious or vegetative states are “dead.” Neither of these conditions is the same as brain death.
Instead, these are conditions that lead to difficult decisions for professionals and families alike. These patients are not dead, and some small percentage of them may well be more alert than we know. However, for most of us simply respiring and circulating doesn’t constitute life, or at least a life we want to live. Is human life something qualitatively different than vegetative life? In studies and in my experience, most folks also want life to include at least the ability to interact, if not full functional autonomy. While some communities (for example, the Roman Catholic Church) would state that human dignity is inherent, and unaffected by differences in cognitive state, many folks – in my experience, most – would not find human dignity in lives that did not include human awareness and interaction.
But, what are we to make of the perhaps 10% who are somewhat aware? They bring us back, I think, to my two earlier issues. First, remember that for the other 90% our diagnosis and prognosis haven’t changed. Indeed, while for the 10% our assessment of their capacity has changed, our prognosis might not be changed. Even with increased awareness, it isn’t clear that they will be at any less risk of the conditions that threaten patients who can’t move, including pneumonia, skin breakdown, and other infections that can overwhelm them. Even for the 10% we haven’t cheated death. We have only suggested that they are more aware, and so more capable of experiencing, including experiencing suffering. Have we gained anything if we’ve simply identified a new form of “locked-in syndrome,” where there is some cognitive ability but no capacity to express it?
Second, it raises the question of how we might use this new tool. Will we begin to request fMRI studies for all patients diagnosed as minimally conscious or vegetative? Remember that for perhaps 90% the study will only confirm what has already been diagnosed. Even for the other 10% it may not change their prognosis. Again, we have no evidence that this information will make their lives better, much less longer. In that context, will insurance plans be willing to pay for these studies for these patients? Will more hospitals justify the expenses of equipment and professionals to do these studies? Maybe; but then again, maybe not, whether this decision to ration is based on the ability of the patient to afford insurance, or on the ability of the insurance provider to afford the patient.
And so we are left with the same questions – questions that are matters of clinical ethics for most, and intensely personal for some, both clinicians and families. In this sense the Religious Dispatches headline might have a point: for those of us who help clinicians sort out these questions of what makes life worth living, and at what point to let go, this may well complicate expectations, without really offering any new hope. In our time we have redefined the concept of “a fate worse than death” to include interventions that prolong death without offering any additional life. We have yet to see whether this new information will offer help, or will simply tempt us to prolong treatments that, for lack of meaningful promise, become extended assaults on physical integrity and human dignity alike.
So, once again I have to say, “please, Dr. Gupta, I don’t want to go.” Or perhaps this time, “please Dr. Gupta, I do.”