Published ahead of print on April 22, 2004, doi:10.1164/rccm.200403-309OE
© 2004 American Thoracic Society
The Critical Care ExperienceA Patient's ViewDepartment of Philosophy, University of Toronto, Toronto, Ontario, Canada Correspondence and requests for reprints should be addressed to Cheryl Misak, Ph.D., Department of Philosophy, University of Toronto, 215 Huron Street, Toronto, ON, M5S 1A1 Canada. E-mail: cheryl.misak{at}utoronto.ca This short article is written "from the inside": from the perspective of someone who has spent weeks in an intensive care unit (ICU) with acute respiratory distress syndrome, severe sepsis, and multiple organ failure. My life was saved by highly skilled and compassionate physicians and nurses. I am also an academic philosopher and I was struck by how certain assumptions made by these physicians and nurses might be improved. I offer the following suggestions about patient autonomy and about the transition out of the ICU against a background of profound gratitude and respect for those who work in critical care. Many studies have looked at the mental distress experienced by ICU patients with acute respiratory distress syndrome. Of those surviving patients who remember anything at all, the vast majority report harrowing psychotic episodes. These are usually "nightmares often of a bizarre and extremely terrifying nature," hallucinations, and paranoid delusions—typically of the medical staff trying to harm or murder the patient (1). They are especially frightening because they tend to occur in real time and to hook onto slices of external reality. One takes actual physicians and nurses in the ICU, whips up a violent conspiracy theory around them, and then has the conspiracy play itself out in the midst of actual conversations and medical procedures. One quite literally loses one's grip on what is true and what is false because the true and the false are mixed together in a mess of experience. These studies suggest that it seems not to be "unpleasant memories for real events during critical illness" that are related to the posttraumatic stress disorder that often follows ICU psychosis. It is the memories of the delusions (2, 3). The more patients remember of the real events (the extreme medical procedures, the horrific drowning sensation when one can't breathe before intubation, the suctioning), the less likely they are later to suffer from the symptoms of posttraumatic stress disorder: having some memories of what really went on, no matter how terrible that was, seems to be protective against posttraumatic stress disorder, as it allows the patient to question the reality of the delusions. My own experience very much bears out the hypothesis that one benefits from knowing that some of the remembered events really did happen: that one wasn't entirely mad the entire time. For weeks after I regained awareness, my central preoccupation was the attempt to sort out which memories were of actual events and which were of imagined events. It was exceedingly important to get this right. I remembered that at one point a woman with a large crucifix around her neck asked me whether I wanted to see a priest. It seemed to me that this was a friend of mine and I couldn't understand how she could be in the ICU asking me this question, given that she was (1) Jewish and (2) living in Paris. Soon after I regained awareness, I saw this woman and pointed to her in my husband's presence. "That's the ICU chaplain," he said. "She looks like Judith, doesn't she?" It was an enormous relief to place that memory in the correct box. But much of the required sorting out had to wait until I was extubated, when I could question others about what happened. I asked my husband whether there really was a Christmas party (this was in April) at which the physicians drank copious quantities of alcohol and proceeded to parade, ridicule, and humiliate the most pathetic patients, myself included, much to the mirth of all. Part of me knew that this couldn't have happened, but it was so real-seeming that part of me couldn't believe that it didn't happen. Of course, the fact that one has this "memory" of people who so selflessly fought night and day to save one's life is its own kind of embarrassment. The most persistent delusion I had began as I first became aware of the whirl and beat of the machines to which I was chained. The pain and discomfort were unspeakable and to make matters much worse, certain of the medical staff were standing over me with the police, trying to bully me to lay charges against a highly problematic student who had been causing me trouble just before I had become ill. Again, the distinctive feature of these delusions is that they are a mix of fact and fiction: I didn't imagine the thump of the machines, the pain, the physicians and nurses (whose individual names and characters figured in the delusion), and the struggle into awareness, but I certainly imagined the police and the bullying. It thus strikes me as correct when I read that ICU delirium may be as emotionally devastating as intraoperative awareness during anesthesia (1). Indeed, as the clear-headed thoughts started tumbling in, I was struck by the thought that dying is easy: it is the coming back that is unimaginably difficult. As the literature, both popular and scientific, says, the delusions in near-death experiences are peaceful and pleasant. But the delusions when one is on the mend are horrific. I also was struck by the explicit and happy realization that it was highly unlikely that I would have to go through that again: another sinking into death was inevitable, but I would have to be horribly "unlucky," I thought, to come back from near-death a second time. It ought to be clear that mental distress of this sort has rather severe consequences for the patient–physician relationship. Most importantly, it brings into question the principle of autonomy—that one must respect the intrinsic value of people's capacity to run their lives for themselves, even if there is reason to think that they are making a mistake. Indeed, a second kind of mental distress in the ICU contributes to the problematic status of the principle of patient autonomy: the incredibly intense and single-minded desire to be extubated and then released, whatever the costs. Intubated patients tend to champ at the bit, so to speak, to be off the ventilator. Trying to rip out the tube lodged in one's throat is a frequent phenomenon: the technical term is the brilliantly understated "unplanned extubation." I was so desperate that I had a series of hallucinations in which "the team" went round to each bed and merrily extubated patient after patient, bypassing my bed altogether, despite my imagined frantic waving and pleading. I was somehow able to communicate this desperation to the nurses and physicians, notwithstanding the fact that I couldn't speak and was too weak to write even one legible word on the pad I was given for this purpose. I was eventually persuasive and was extubated a day or two before it was thought maximally desirable. And then, once I was moved to the ward, I managed to get released after two nights, despite the many good reasons offered to the contrary. I was grateful for both of these things. But even at the time I wondered why my desires were being taken into consideration—why it couldn't be seen that I was a lunatic. And once I was at home, in an alarmingly fragile state, it wasn't clear to me or to my family that this was the best outcome. The principle of respect for patient autonomy has it that health care professionals, to fulfill their moral duties toward a patient, should always treat the competent-seeming patient as having the capacity to make his or her own choices. And the principle carries with it a presumption of competence: competence is to be assumed when no explicit evidence to the contrary exists. No doubt I appeared perfectly competent. I was, after all, propped up in bed, reading the Guardian Weekly and the London Review of Books. I was appropriately responsive to questions. But I was a psychological mess and shouldn't have been taken to be fit to participate in decisions. Despite the fact that the physicians and nurses had done so much for me, I was filled with well concealed fear and loathing for most of my lifesavers and caregivers. And I was overwhelmed by the determination to be extubated and to get out of there. Given what is known about the prevalence of quiet (as opposed to agitated) delirium in ICU settings and about how hard it is to detect it, the principle of autonomy seems out of place in the ICU. For it fails to take seriously the complex and extraordinarily difficult predicaments in which most critically ill patients find themselves. It would be better, I suggest, to adopt the policy of resolutely doing what is in the patient's best interests, despite the fact that this will be viewed as highly paternalistic by the patient and perhaps by much of the community of health care professionals and ethicists. No doubt this suggestion is possible only in those societies, like ours, in which paternalism in the medical profession has already been eroded. Physicians, if you like, need to keep a double set of books: they must, on one hand, see the patient as an autonomous person who ought to be in control of his or her life and they must, on the other, see the patient as a medical problem in need of the best solution. They must see the patient as a person, but also as a physical body on which they need to act, often in horrific ways that are in tension with seeing the patient as a person. No doubt this is a difficult set of books to keep. But the difficulty shouldn't be hidden or simplified by a principle of autonomy that is too crude an instrument for the subtle phenomenon in question. We must see that, as David Velleman puts it, in truly extreme physical circumstances we cannot claim broad rights of self-determination in a patient's name. In such circumstances a patient "is already in the twilight of his autonomy, where self-determination is more of a shadowy presumption than a clear fact" (4). The patient both is and is not a responsible agent in this twilight. For in such circumstances, one's self is quite literally falling apart, disintegrating, or coming undone. For those patients lucky enough to be restored to their former selves, some educational material about ICU delirium ought to be made available. Imagine having been through a significant period of utter insanity and not knowing that this was only to be expected. At least one study calls for education about the normality of these reactions (2). I couldn't agree more. This brings me to the second of my two issues: that of managing the transition from the ICU to the ward and then from the ward to home. When I was moved from the ICU, I was still terribly shaky—full of strange pains in the lungs and weaker than it is possible to imagine. The ward, of course, was a different world, with nurses so busy it was difficult to get help to do rather necessary things such as go to the toilet (and after weeks of catheterization, one loses all one's natural benchmarks for when this might be necessary). The transition from having someone at your bedside 24 hours a day to someone checking you once in the night is unsettling, at the very least, and utterly frightening at the most. The panic for me was mitigated by the fact that early on, during my first morning in the ward, a wonderful nurse from the ICU was at my bedside, just off shift, no doubt dog-tired and in need of getting home. She stayed for a long time and returned before she next went on shift, checking to make sure that I was getting what I needed, answering my countless questions, and providing a much-appreciated link between the maximum protection of the ICU and the minimum protection of the ward. But of course, such care is above and beyond the call of duty: it is not systematic and cannot be relied upon. The hospital I was in is putting together a critical care transitional team. If this kind of transitional initiative is to get it right, then it ought to solicit input from patients who have actually gone through these transitions. It must find out what issues are of concern: the lack of human contact they have become used to in the ICU, the reduction in the frequency of checks on their condition, and so on. No doubt these patients would appeal for something like a stepdown unit. They would also appeal, I suggest, for some information about what they might expect in the days, weeks, months, and years to follow. One of the most unpleasant aftereffects of my insult was a severe burning sensation, on the slightest bit of heat or exertion, which started from my feet and roared up my body to my neck. It was very much like I was on fire: indeed, the pain could be doused only by icy water. My family doctor was stymied. I combed the medical journals and found nothing about this. The Internet was useless. I eventually went back to the ICU and asked the head of the Critical Care Department about the burning. I was told that it was ICU neuropathy and that it would go away in a year. That was good to know, but it would have been better to know earlier. A critical care hotline to deal with the queries of the discharged would reduce the anxiety and worry considerably. Caring for the critically ill must be a challenging business. One doesn't want to gratuitously add to this burden. But the initiatives I mention here—a rethinking of patient autonomy in the ICU and a commitment to managing the difficult transitions out of the ICU—would go a long way, I submit, to fully caring for those who have been gravely ill. Acknowledgments The author thanks Donald Ainslie, Margaret Herridge, David Mazer, and Gopal Sreenivasan for encouragement and comments. FOOTNOTES Conflict of Interest Statement: C.J.M. does not have a financial relationship with a commercial entity that has an interest in the subject of this manuscript. Received in original form March 9, 2004; accepted in final form April 22, 2004 REFERENCES
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