Chapter Twelve: Some Cases Are Just Difficult
In 1979, Bethany's mother found me in the hallway of the hospital and pleaded with me to see Bethany in consultation. She was fifteen at the time, being worked up for abdominal pain while an inpatient of Dr. Leo Straten. During the past year she had repeated episodes of severe mid abdominal pain associated with vomiting. Dehydration would develop and she would be hospitalized, now for the fourth time. She had her upper GI x-ray and cholecystogram (gall bladder x-ray), both of which were normal. Examination of her abdomen revealed no significant abnormalities. Blood counts and blood chemistries (checking kidney and liver function, blood minerals, proteins, etc.) were normal. Yet, Bethany would lie in bed curled up in a fetal position holding her upper belly, occasionally dry heaving. She was rehydrated intravenously and received periodic shots of Demerol (for pain) and Phenergan or Compazine (for nausea).
I agreed to see Bethany in consultation for a second opinion, though there wasn't much of a first opinion. When I first went in to her hospital room, she had some relief from a recent pain shot, and so was able to be interviewed and examined. Although Bethany looked ill and miserable, before me was a strikingly beautiful young woman who spoke with sincerity and openness to any help we could provide. She denied the usual teenage stresses of family problems, drugs, boyfriend tribulations, and school failure. Her bouts of pain did not seem to correlate with what one might expect from stomach ulcer or gallbladder disease. The tests for her pancreas were normal. She had a normal pelvic exam and cultures showed no infection. It seemed at this point that the only reasonable thing to do would be to try some empiric (use of a medicine to treat symptoms and/or a diagnostic guess) treatments. What would happen if we suppressed stomach acid with ulcer treatment drugs? We could try antispasmodics. Maybe even anti-migraine drugs as a long shot (there is a rare entity called abdominal migraine, coming from spasm of intestinal blood vessels. I don't know anyone who has ever seen this).
During the next year, everything that we tried worked a little bit for a little while. Each glimmer of hope faded within weeks of a new approach. Bethany had repeated hospitalizations for dehydration and pain management. One of my partners labeled her as having anorexia nervosa. However, she ate well when not in pain and was able to maintain her body weight until she became dehydrated from acute fluid loss. Eventually, during a hospitalization, I arranged for a psychiatric consultation. This psychiatrist lived twenty miles south in the larger town down the road but was willing to come up to see Bethany. His diagnosis was ‘hysterical conversion reaction’ (display of dramatic symptoms driven by an underlying psychological conflict). He felt that her syndrome was psychiatric in nature. Because of its severity and threat to her health as well as the massively difficult management of ‘hysteria’ in a teenager, he recommended that she be treated as an inpatient at the Langley-Porter Neuropsychiatric Institute at the University of California Medical Center in San Francisco. She was willing to go but making the arrangements was an enormous task. After weeks of phone calls and MediCal (California Medicaid program) authorizations during which the department of redundancy department had to review the application, think about it, lose the paper work, on and on, we were able to get approval for Bethany's admission. The only condition was that she had to show up and voluntarily stay for a month. My personal and professional investment in her case at that point was quite large. Though her parents gave lip service approval of the plan, there was a certain vacancy to their support for Bethany. I suspected that this was a family with limited psychospiritual resources and underneath the surface, they resented Bethany for her illness. I also felt their distrust for our medicine in general, but they spoke words of agreement and so the plan and associated efforts proceeded.
Bethany never made it to the Institute. I wasn't positive about exactly what happened, but somehow Bethany's mother sabotaged the plan, or thwarted Bethany’s willingness to stay for a month, so the effort was for naught and I was ready to wash my hands of the whole mess. It is one thing to struggle with a patient who is fighting with you for help but quite another to fight against the tide of family pathology and unspoken scripts that serve to defeat your greatest efforts. At some point it is time to cut ones' losses and move on. I told Bethany and her mom that I could no longer take care of her and recommended that they find another doctor. I wished them well, and meant it.
Many years passed. I had long since left the family practice to pursue full time emergency medicine. The burdens of chronic care were no longer my problem. Bethany had a couple of visits with the psychiatrist but when family dynamics became central issues in Bethany's struggle, her parents balked and therapy came to a screeching halt. It seemed that without a physician or psychiatrist intimately involved with her care, she was ill less often and managed to finish high school without dying or dropping out. For years after she graduated, I neither saw her nor heard about her life. Evidently she had moved to the Sacramento area and tried to attend a junior college. I later found out that her life continued to be punctuated by frequent need for medical care, multiple hospitalizations, and probable substance dependency. I was not so much surprised by her unending string of medical trials, as I was amazed that she was still alive. Her condition seemed so unstable, so capable of taking her life. Selfishly, I was relieved that she was elsewhere. Although I had considerable compassion and hope for Bethany, I felt impotent to help her beyond some emotional support and I did not want to participate in feeding an underlying drug seeking behavior, if that might be the case.
Twelve years ago, with a baby in tow, Bethany moved back to our town, hopeful and relatively healthy. She had survived a pregnancy with far fewer episodes of pain and vomiting than before. Hormones sometimes have a powerful mitigating effect on abdominal problems, anorexia, and vomiting (except with the ‘nausea of pregnancy’). But now pregnancy was over, the baby's father was not present, and Bethany returned to restart her life here, with grandmother’s help for her baby. Bethany’s health was not to last.
Seeing her name on the ER chart waiting to be seen by the emergency room physician was so unsettling, yet predictable. For the first time in thirteen years, I would have to treat Bethany again. For the same problem? She was no longer a beautiful teenager with the blind hopes of youth on her side. She had aged at least fifteen years in the past ten and revealed some of her life trials with bad teeth, eroded by countless coatings of stomach acid, a sure way to dissolve dental enamel. There were a few lines on her face, but she still had a genetic attractiveness that so grossly misrepresented the true state of her being. There was not a shred of ugliness in her spirit, just inner wreckage that only her most intimate of intimates would ever know about. I knew.
Bethany and I spoke at length about her misery, her past decade, parenthood, and her childhood. She admitted that when I saw her as a young teenager, she lied about substance abuse. She was using coke, crank, and pot for "recreation", if not relief from her pains. This was now many years ago, and she rarely used street drugs anymore, but begged me for 'something' for her pain. Her lab tests were normal, so, I gave her a few liters of IV solution and a shot of Demerol and Compazine . She got better. Much better.
Bethany was unable to establish a relationship with any of the few local private physicians because none of them would take new MediCal patients. And so her care was fragmented through multiple emergency room visits. More often than not, she would see one of my other ER physicians, and by the time we all compared notes, we decided that she should not be given more narcotics. Whether it was conscious intention or not, a pattern of narcotic dependency clearly had developed. We could freely offer anti-nauseant medicine and intravenous hydration but we were determined to not stimulate her brain opiate centers.
She cried and pleaded for relief but we stood together and denied narcotics. After a few months of pathetic visits, we decided to try some Buprenex, a narcotic derivative thought to be virtually devoid of addictive properties. It worked. We were so relieved that we had found a drug we felt we could use for Bethany that helped but did not reinforce her narcotic tendencies. In further interviews with Bethany, she expressed a desire for counseling, but had limited access to therapists because of her MediCal status. She previously had more than one unsuccessful counseling relationship. Antidepressants were tried without benefit. The only psychiatrist who might have been in a position to see and help her disqualified himself because he was already seeing another family member for unrelated problems and felt that there could be a potential professional conflict.
After a typical interval of relative health for Bethany, she began to come in more frequently. She was unable to account for her worsening but acknowledged a current relationship with the father of her child. No amount of crisis counseling from other competent staff personnel or me helped reduce the frequency of visits, during which she always received a shot of Buprenex and Phenergan, with benefit. As the frequency of visits went up, her body weight went down, and I had increasing fear for her survival. I had to get her into counseling.
Dieter Krause was a local counselor who practiced a therapy called Hakomi. He did not have a formal license in psychotherapy, or MFCC, but had a small practice in town that grew slowly by word of mouth. Hakomi is a therapy that focuses on body sensations as a route to deeply held psychic trauma. It is a directed meditation, with verbal and non-verbal components, and hands-on contact from the therapist. He touches the part of the body that is uncomfortable and communes with the pain in order to help the patient to more deeply experience the content of the pain. Dieter presented himself to the medical staff two years before this time to educate the doctors about his art and to drum up business. He even offered free sessions for medical staff physicians to experience his work. Most of the people in this community who could benefit from therapy have minimal resources or have MediCal, which he could not use, so there is only a rare patient we might refer to Dieter. I came to hear through the grapevine that he was feeling some resentment for us because of not having any referrals. It occurred to me that this might be an interesting test situation. If he had something to offer that goes beyond standard therapy or which is otherwise special and might be able to help Bethany, it would be worth a try. He wouldn't have to be crabby about not getting a referral and he would be given a chance to prove himself. I knew it was a bit of a setup but unusual cases that fail standard treatment deserve a trial of unusual treatment. As Bethany was economically dependent on MediCal and was otherwise poor, and I was sticking my neck out trying this unconventional approach, I decided that I would personally fund two sessions for her to see if this route might be productive.
By the time of the first appointment, Bethany was suffering with daily abdominal pain necessitating emergency room visits at least four out of seven days a week. I felt that I was investing in Bethany's survival. I knew that I didn't have to do this. It wasn't really my problem, but at a higher level, it was my problem. Her case was on my plate and I knew that no one else would doing anything for her and if she died, I wanted to be able to look at myself in the mirror and know that I tried. And so Dieter saw her. The session appeared to be productive. He was gentle, appropriate, and effective enough to win her acceptance and trust. When he put his hand on her abdomen, the pain got better. They agreed to continue. So did the ER visits. A second session with Dieter was equally helpful. Bethany wanted to do more, and said that her mother might help her pay for more sessions. Before another appointment was scheduled, Bethany's ER visits became daily and she needed to be admitted for dehydration and poorly manageable pain. She was going down the tubes. My colleagues in the emergency department came to me with the sense that we were again dealing with addiction - to the ‘non-addiction prone’ drug Buprenex. We decided to stop this drug and revert to an anti-emetic only plan. That is, we would only offer non-addicting medication to control nausea and vomiting. My technique, when I am going to stop using narcotic drugs with a patient, is to inform them before I actually enact the withholding. Having decided this, Bethany was back the next day, like clockwork. I let her know what our feelings were and she accepted them as presented. She agreed to go along with our plan. She was grateful that the plan was not to begin until the next visit. Buprenex made her better, again.
When she returned two days later, she initially accepted her Compazine and intravenous fluids. But, she stayed curled up in a fetal position on the gurney, intermittently moaning or whimpering in agony with abdominal pain. She begged me for a shot of Buprenex. When I was out of the room, she begged a nurse to let her have some and not tell me. She groveled, to no avail. Her behavior helped crystallize my clarity about her. Though I had no way of knowing which was the cart and what was the horse, whether a psychogenic pain syndrome began a chemical dependency, or the other way around, I now knew that the primary disease that had to be treated was Bethany’s chemical dependency. In this case the chemical was the 'non-addictive' synthetic narcotic derivative, Buprenex. (History reminds us, when heroin was put on the market, it was touted as a non-addictive alternative to morphine. When Demerol was put on the market, it was the same story.) Although it is very hard to deny pain relief to someone for whom I had great compassion and a degree of personal affection, I held the line. No amount of conversation and offer of support changed her cry for medication. The vignette was one of hopeless and pathetic addiction. After a lengthy attempt at compassionate reason, I got up from my bedside stool and told her that I was sorry she had to suffer but there was nothing more I could do. She went home an hour later. I didn't see her for two months after that.
When I next saw Bethany, her son was the patient, to be seen for an ear infection. She looked great. She stated that she had some struggles with abdominal pain, but was handling it herself, without drugs. She felt more in charge of her life than ever before and thanked me for my efforts and caring. After taking care of her son's problem, she gave me a warm hug and I thanked her for not giving up. I knew that the chance of her staying healthy was not great, but every day out of the hospital is a day of triumph and joy for those with chronic illness, medical or chemical.
Bethany’s case illustrates one of the medical problems with which
clinicians have a terrible time. When tests fail to reveal a clear-cut
diagnosis and the symptom complex is severe or life threatening, what
is the best course of action? Ask for a second opinion? And if the second
opinion is also nebulous or doesn’t help produce an effective course
of action, then what? And if the symptom is largely pain, how do we relate
to the use of addicting narcotics for a condition without clear cut definition?
Do we conclude that the disease itself is chemical dependency? Or, do
we remain open to the possibility that something may be going on for
which we do not yet have an explanation? New discoveries are being made
all the time and illnesses previously considered to have one cause have
been found to have a completely different nature. Case in point is ulcer
disease. Until just a few years ago, ulcers were thought to be caused
by stress and tobacco. Now we know that there is a bacterium that causes
the disease in most people. Antibiotics are curative! New diseases are
evolving as viruses mutate and cause new kinds of infection. Some are
dramatic as in the case of AIDS or Ebola virus, but other are subtler
such as Lyme disease. In any case, I will never know if Bethany’s
abdominal pain when she was fifteen was the ‘hysterical’ manifestation
of a drug problem, a purely psychological cry for help or love, or a
physiologic process for which there was no help short of the pain killers.
And did these narcotic medicines cause or solidify a chemical dependency
that, because of its subtle nature, nearly killed her. And what might
we expect for her future? Struggles with chemical dependency are often
life long, with successes and defeats along the way. So often it happens
that I will talk to my nurses about a patient we haven’t seen for
a long time, fortunately for them or us, and within a week or a day,
they return, sick again. I'm learning to keep my mouth shut.
All Rights Reserved © 2004 Jon Sterngold