Monday, March 26, 2007
Refusing to Abandon
On the plane back from Maui, I finished reading Rita Charon's engaging and provocative book Narrative Medicine. I underlined many passages; some got stars next to them, too. Here's one of the starred statements: "Achieving safety and refusing to abandon -- not normalizing a high LDL, . . . not landing a BMI between 18 and 24 -- are the goals of clinical care" (150).
Reading that sentence, I remembered times when I've felt abandoned by doctors. In the mid-nineties, I began having twinges of lower right quadrant abdominal pain that led to round after round of exams and procedures: pelvic exam, ultrasound, GI series, exploratory laparoscopy. None of the tests showed anything. In one sense, of course, this was good news, except that the nagging pain continued. Each new specialist I saw was positive that his or her branch of medicine would offer me an answer; each initially approached my case with empathy and enthusiasm, and each time, I wound up feeling completely cut off when that specialty's procedures found no answer. There was a palpable withdrawal of interest, not only in my case, but in me as a human being.
I finally figured out on my own that the pain might be related to depression, which can cause GI symptoms; when I started meds in 1994, the pain subsided, although it never went away completely. I still have it. A few years ago, it became worse again. Because I still have my appendix, I went to my doctor to make sure that this was just the same old pain, and not appendicitis. I had a CT scan that showed "suspected thickening of the bowel wall," and then I went to my gastroenterologist and had another complete GI series, which again showed nothing (the "suspected thickening," it turned out, was just peristalsis). My GI doc offered me another exploratory laparoscopy, which I declined. I went back on antidepressants. The pain subsided again.
My current doctors haven't abandoned me, although they're puzzled about the pain. Whenever I see my gastroenterologist, he palpates that part of my abdomen to see if I'll still wince: I always do. And he always says, "Huh, you always have that hot spot, don't you? It's just one of medicine's mysteries." Because he's willing to accept my report of my own symptoms, even though he can't find a reason for it, I feel safe with him.
It's very important to note here that even at its worst, my pain has been fairly low-level. I've never taken pain meds for it: my goal has always been to learn the cause of the symptom, not to cover it up. That probably has a lot to do with why my current doctors have remained attentive and compassionate; they know I'm not using mystery pain to seek drugs.
A few months ago in the ED, I met a patient whose history was quite similar to mine, except that her pain was much, much more severe. Like me, she'd had tests -- over several years -- to rule out Crohn's, appendicitis, pelvic adhesions, and various other conditions. Weeping, she told me how much she hates being sick, hates not being able to give her children her full attention, hates not knowing what's causing the pain.
She'd come to the ED hoping that the doctors there could finally determine the cause of the pain, which was more severe that day. (One of the ironies of this kind of medical mystery is that one almost welcomes a worsening of symptoms, because if the pain's stronger, maybe something will finally show up on a scan.) "I've been here since this morning. I'm in agony. But the tests came back negative again, and when I asked for more pain meds, the doctor told me, 'I'm not giving you anything else. There's nothing wrong with you.'"
Listening to her, my heart sank. I remembered how it felt to be dismissed from all those doctors' offices more than a decade ago, how it felt to suspect that they thought I was a hypochondriac, and to wonder if they were right. This woman had the added burden of having been labeled a drug seeker. And indeed, when I told her nurse that the patient, sobbing from pain, had once again requested meds, the nurse rolled her eyes and said, "Yes, of course she did."
Drug-seeking is a real dilemma for doctors in EDs, and there are patients I label almost immediately, too. If I identify myself as the chaplain and you still keep begging me for Demerol, we have a problem. Drug seekers often report back pain or abdominal pain, so it makes sense that such a report without a clinically evident cause will raise a red flag for medical staff (although drug withdrawal produces symptoms of genuine physical pain, so drug seekers aren't necessarily lying about their discomfort levels).
Maybe that patient really was a drug seeker; maybe I was suckered by an Oscar-worthy performance. But I don't think so. I don't think anyone can act that well. I believed her, both because of her obvious frustration with being unable to care for her family, and because my own history has taught me that doctors can't always find the source of pain. The medical staff didn't have time to sit next to her bed and listen to her entire story; that's my job. But I wondered if they'd have been kinder to her if they'd heard what I did. It grieved me that this patient had been spoken to harshly by staff, that she had wound up feeling both unsafe and abandoned. According to Charon's definition, the handling of this case didn't meet the goals of clinical care.
Charon's a family-practice physician, and maybe such goals aren't appropriate in an ED, where long-term patient-doctor relationships are more the exception than the rule. Still, I wonder if there's some way for medical staff to honor their own principles and priorities without shaming patients, even those they believe are seeking drugs. "I know this is very frustrating for you, but I can't give you narcotics without concrete medical justification, and since all your test results come back negative, I don't have that here."
Would patients feel less abandoned if ED doctors in this situation said, "Here's the number of a pain clinic?" or even, "Here's the number of Narcotics Anonymous?" Would they feel less abandoned if doctors said (as various doctors have often said to me), "Medicine's an imperfect science, and sometimes we can't find the answers?" Is there some way to acknowledge suspected addiction without abandoning the patient?
If 12-Step programs are correct that addiction is an effort to fill the "hole in the soul," feeling unsafe and abandoned can only contribute to addictive behavior. And if patients aren't, in fact, seeking drugs, feeling unsafe and abandoned only adds emotional pain to their physical symptoms.