Ring them bells Sweet Martha . . . for the chosen few
Who will judge the many when the game is through
Ring them bells, for the time that flies
For the child that cries
When innocence dies.
—Bob Dylan, Ring Them Bells (1989)
June 1985
It would have been easy to walk away, recuse myself, as the lawyers say, plead nolo contendere or take the Fifth, so many ways to bow out forthwith. No one would have blamed me, not even Martha—oh, she might have loved me less, but she would have understood—and her children would have accepted my withdrawal without complaint, including Mark, who drove east from Ohio. It would have been easy for me to ask Paul, already complicit in the irony if not the guilt of Fred’s death, to take over for me and help get Martha through this thing, whatever it was.
When I first heard about Martha’s illness, it seemed right up Paul’s alley, a classic example of psychosomatic medicine, his specialty. She won’t get out of her chair, Martha’s daughter told me. She even sleeps in it. She says she can’t walk or even stand up. I don’t know what to do, Margaret said.
It was easy to leap to the kinds of hypotheses that Paul might entertain—paralyzed by grief, immobilized by loneliness, that sort of thing. Freud himself had marveled at Charcot’s work on hysteria more than a century ago, most of his patients women with “hysterical paralysis” resulting from various subconscious conflicts. If this were Martha’s problem, it would be a delayed reaction, but shell-shocked soldiers weren’t the only victims of post-traumatic stress disorder. Martha was a setup.
Or was she? Martha’s heart had been weak before it was broken, but she’d survived the winter without complaint. So, why now, in June? Here in the north country, June is lilacs and every shade of green and a soft golden light that lingers deep into evening time. Winter, not June, was when folks hunkered down, conserved their energy, insulated themselves against the cold and the past. That was when the widows nursed their memories and the dreamers their disappointments—in winter, when the dark came early, the long snowy nights silvered by moonshine, the planet oblivious to everything but its own gravity. Not now, not in June. Even subconsciously, why would Martha cry out now?
Back then, not knowing better, I tried to make sense of such things, look for the logic where none could be. I had a lot to learn about medicine’s mysteries.
The ambulance people brought her in a wheelchair. Martha had never used a wheelchair before, but she had refused to be transported on a stretcher. I can’t lie down, she had told them. When they wheeled her into my office she shot me an embarrassed smirk and said, Look at the mess I’ve dragged you into this time. Martha’s demeanor was the opposite of what I would have expected if she were giving up and hunkering down. She wasn’t withdrawn or passive, limp with resignation. She was the Martha I had always known: self-deprecating but feisty, sarcastic, her world-weary shrug more protest than surrender. So I decided right then and there, correctly or not, that if Martha says she can’t walk or lie down there’s probably a damned good reason for it. And it’s my job to find it.
But my confidence ebbed after I examined her. I found nothing new, nothing to explain her complaints. Her vital signs were normal and, despite her grief, she hadn’t lost weight. Her heart was enlarged but it always had been and she swore that her breathing had nothing to do with her inability to walk or lie down. With great conviction, she said the problem was in her legs. But her pulses felt no feebler than expected in an old lady with a bad heart, and the arthritis in her knees and lower back seemed no worse than before. Her strength had always been surprising and it was no different now: When I asked her to bend her knee up to her chest and resist me, I couldn’t push her down, left or right, and I found no sign of a neurological cause of her symptoms. But when, finally, I asked her to stand and try to walk, she said, I can’t do it, Brendan. I said, I know, I’m sorry, Martha, but I need to see for myself, and she said something about Doubting Thomas and sticking my hand into her wounds but she said it in the kind, knowing way a mother admonishes her child and then she raised herself up out of the wheelchair and stood there with her back bent over and her legs trembling and when I asked her to take a step she seemed stuck to the ground, grimacing, and when she straightened up to try to walk she moaned and fell back heavily into the wheelchair.
I’m sorry, I can’t do it, please believe me, I just can’t do it.
I asked her to tell me what she felt when she tried to walk, what she was feeling that made her sit back down. All she could say was It’s my legs, my legs, and when I asked about her knees and hips where the arthritis was bad, she said, No, it’s not there, it’s my legs, and she ran her hands along her thighs from her knees up to her waist and said, Here, it’s here. I checked the feel and strength of her thighs again and they were normal, cold normal, no different from yours or mine, just older. No, she protested, they don’t bother me when I’m sitting, it’s only when I try to stand and walk, and at first this didn’t make any sense to me. She must have seen this in my face—more than puzzlement, she saw doubt, disbelief—because she said, All I can tell you is what I feel, Brendan, I’m not making it up, you know, but then she saw that that’s exactly what I was wondering, against my better judgment: Maybe this really was one of those “conversion reactions” I had read about in Freud but never seen myself. Martha looked at her daughter and then she looked at me and she said, You must believe me, you two especially, you must believe me. I said something lame like Of course, we believe you but now I wasn’t sure if she believed me.
So there we were, the three of us in my examining room, and I’d swear that each of us, if asked, would have acknowledged that we weren’t three, but four. Right there, over there, the ghost in the corner. His name was Fred.
I sent Martha downstairs to get a series of X-rays on her hips and knees and lower back, knowing they wouldn’t show me the answer, but it bought me some time to see my other patients and think about what to do. When she returned from Radiology, I saw no option but to put her in the hospital. Her X-rays showed the same severe osteoarthritis she’d had in her knees and hips and spine for years but nothing that explained what was happening to her now. I was reluctant, in fact almost ashamed, to admit a patient to the hospital when I didn’t have a clue what was wrong, especially if it turned out to be all in her head. Martha didn’t like the idea either. She almost refused, despite her daughter’s pleas. This worried me even more. Clearly, she wasn’t seeking attention. She preferred to go home and sit in her chair and see what tomorrow would bring. So, finally, I played my ace of spades. I told Martha that if we’d gotten Fred into the hospital in time, things might have turned out differently for him. Let’s not miss our chance again, okay? I don’t think I could handle that, Martha.
It was the first time since Fred had died that I had mentioned the ghost in the room. Martha just lowered her head, quietly nodded, and said, Okay. I think she did it more for me than for herself. But I think it made her begin to doubt me, too.
God knows she had good reason. Whatever had happened to Fred, I hadn’t helped. And she could see now that I wasn’t sure if I could help her either. I was confident enough about my ability to diagnose physical disorders, notwithstanding my recent failure to diagnose Fred’s. But it was the other side of the “biopsychosocial” sphere that intimidated me, the dark side, that murky realm of desire and wish that makes every person a mystery. Martha could see that I was straddling the fence between a physical, biomedical explanation for her illness and a “psychophysiological” explanation, the paralyzed-with-grief hypothesis. And, though she didn’t say so, Martha was offended by the very idea. She wasn’t the “type” to have a conversion disorder. Pshaw! she would have said if asked—she actually used old Yankee words like that—I know what’s in my own head! Whatever this foolish thing is, it’s in my legs, not my head!
I sent Martha and her daughter down to the hospital admitting office and I paged the admitting resident on call. I wasn’t looking forward to our conversation. He or she would be very busy, running around admitting new patients, and even though residents aspired to autonomy and said they wanted to figure things out for themselves, they also wanted to get their work done. So, when presented with a new admission from the clinic, most of them listened politely to the senior physician but then blurted out what they really wanted to know: So, what’s wrong with this lady? Why are we admitting her? I wasn’t looking forward to the answer I would have to give about Martha: She’s an old lady with a bad heart who says she can’t walk but I haven’t found any obvious physical explanation for this yet and I’m beginning to wonder if it’s because she’s carrying a ghost on her back.
Luckily, it was Jim Henshaw who answered my page. Jim had come to Dartmouth from Duke, planning to return to Duke for a cardiology fellowship after doing his medicine residency here. Recently he had begun to wonder instead about a career in primary care, in part because of his experience with a patient we had shared several months before. Mrs. Jardin was an elderly French widow who lived near the Canadian border in northern New Hampshire. She traveled down to Hanover every year to have her checkups done at Dartmouth. She was remarkably healthy and wanted to do everything she could to stay that way. She was always pleased when I announced every year, after examining her carefully and doing various tests, that she would probably live to be a hundred. Don’t be so pessimistic, she would say with a twinkle in her eye, reminding me that her mother had lived to 107.
Jim got to know her when, last winter, Mrs. Jardin had come to see me complaining that something was wrong with her legs and I had admitted her to the hospital on Jim’s team to find out what was wrong with her. Mrs. Jardin never complained about anything. But for the past week she had noticed that climbing the stairs and even rising from a chair seemed difficult somehow and she knew for sure that something was wrong. I agreed with her. When I tested the strength in her upper legs as she lay on my examining table, I was able to overcome her resistance; I could easily push her knees, first her left and then her right, down from where I had asked her to flex them hard up against her chest. She was a seventy-eight-year-old 105-pound woman; I was a thirty-five-year-old 170-pound man. But I knew that this weakness was abnormal for her. I had done this same strength test every year on Mrs. Jardin, most recently just several months ago, and every time before now she had passed with flying colors. Her weakness was subtle but it was real, and the pattern of her weakness suggested that she had a muscle disease. More worrisome, her complaints were only a week old, so I couldn’t tell how fast her muscle weakness might be progressing. I had seen a patient with polymyositis, the disease that I worried she might have, worsen so rapidly that he couldn’t swallow or breathe within just a few weeks after his initial symptoms began. I admitted Mrs. Jardin to the hospital for careful observation and arranged her muscle biopsy for the next day.
Jim, a junior resident at the time, was a bright, confident guy not many years younger than I. Given our trivial age difference—and knowing I didn’t mind—he took some liberties with me that he dared not try with older faculty physicians. After examining Mrs. Jardin himself in the hospital, he had called me on the phone and joshed me about her good-naturedly. She’s the healthiest old lady I’ve ever seen, he said. She wouldn’t make it into the hospital at Duke, I’ll tell you that. I’ll bet you a pizza we find nothing. He wasn’t impressed when we repeated her examination together and demonstrated the subtle weakness in her legs. Jim said, Come on, we’re big guys, we’re a lot stronger than she is, of course we can overcome her muscle resistance! But he changed his tune three days later when Mrs. Jardin was so much weaker she couldn’t get out of bed and her muscle biopsy showed changes typical of polymyositis. When Jim brought the pizza down to my office that day he looked as if he’d just witnessed a miracle of some kind. Starry-eyed, he wanted to know how I’d done it.
It ain’t rocket science, I told him. It’s as simple as this: I know her. I’m her doctor. Having examined her so many times before, I knew this was abnormal. For her. That’s all there is to it.
This was not something a new physician-in-training, even one as talented as Jim, could know. It was a new idea for him: A doctor could be so prescient, so sensitive to subtle but important changes, entirely because the doctor knew the patient well? They didn’t teach this stuff in medical school. Jim began to rethink his career plans. He began to think he’d like to be able to do the same thing.
So Jim didn’t miss a beat when I told him now about Martha. We’re on it, he said. I told him I wouldn’t bet a pizza on this one. I had an idea what might be going on but I honestly wasn’t sure. See what you think after you examine her yourself, I told Jim. I didn’t tell him about Fred. I was pretty sure Jim would find out after talking to Martha (and, if he didn’t, I’d give him a hard time about it). Jim couldn’t learn from this case—and we couldn’t get to the bottom of it—if we didn’t talk about the ghost in the room, along with everything else. Later that day, when Jim called in all the consultants we thought we might need—Vascular Surgery, Orthopedics, Neurology, Cardiology, Anesthesia, Rehab Medicine—he called Psychiatry, too. I wasn’t looking forward to explaining that last one to Martha. But I needed all the help I could get. I didn’t pretend to know 90 percent of what psychiatrists know. I wasn’t sure I wanted to, either.
Just down the hall from Martha’s hospital room lay the most recent example of my inexperienced ineptitude in the twisted mysteries of the mind. Alice Quinn had refused to talk to the shrinks at all. She told them I didn’t know what I was talking about. She told them I was incompetent, completely wrong about what was wrong with her, and that she wanted a different doctor. Until that happened, she would speak to no one, especially not psychiatrists. I’m not the crazy one, she said. Reilly’s the one who’s crazy.
There had been more than a few moments this past week when I had thought she might be right. Alice was way out of my league. When it came to patients with factitious illness—people who purposely made themselves sick—I was a babe in the woods. I’d read about such patients. I’d seen patients in psychiatric hospitals who had cut or burned themselves. But this was different. This was the big time and Alice was right about one thing: I was over my head.
She was young, in her twenties, plain-looking and grim, not one to have lots of boyfriends. Her doctor had sent her to me from Frankfurt, one of the last remaining factory towns in northern New Hampshire, famously repugnant for the sulfurous rotten-egg odor belched continuously from its smokestacks into the surrounding countryside. It was a hardscrabble, hard-living town that had seen better days, a place where a girl like Alice could get lost or worse. Her fevers had started two weeks ago. Her blood cultures had grown Staphylococcus aureus, a bad bug, but her doctors couldn’t find where the infection was coming from. Alice herself knew a lot about such things; she worked as a technician in the Frankfurt hospital’s microbiology laboratory. When, after a week, her doctors admitted they were stumped, it was Alice who asked to be transferred to Dartmouth. For the first few days, we were stumped, too. She didn’t have a fever, her examination was normal, and all of her tests, including her repeat blood cultures, were negative. We concluded she didn’t need to stay in the hospital, thinking she might have had a harmless “transient bacteremia” from a tiny skin sore that was now no longer apparent. I was glad for her. It could have been much worse, a dangerous infection in her heart or bones. I thought it odd that she wasn’t enthused by my good news—she remained quiet, passive, rarely making eye contact—but she agreed to call her parents so they could come take her home in the morning.
That night her temperature spiked to 105. The next day her blood cultures, drawn during the night, were growing Staph bacteria. Clearly we were missing something. We certainly couldn’t send her home. Again, she took this news in stride, not a hint of emotion. She was a strange duck, I thought, but so were a lot of people and again I made nothing of it. Then, for the next three days, she was fine—no fever, no abnormalities on her new tests, negative blood cultures. I called her doctor in Frankfurt. He said, Yeah, the same thing happened here, too. Puzzled, I discussed this with Alice.
That’s why I’m here, she said.
And that night her temperature spiked again.
The next day I felt like a petty thief as I closed the door behind me and rummaged through the clothes and luggage in her hospital room. I wasn’t exactly sure what I was looking for but I’d sent Alice downstairs to have another set of X-rays so I could snoop around on my own. After picking through her private possessions—frilly underwear and pink hair curlers, a romance novel and toiletries—I’d found nothing and felt like a peeping Tom. As I prepared to leave and rethink the case all over again, I lifted up the mattress and found her pocketbook hidden there. The syringe was in a zippered compartment, thick yellow pus filling its 10 cc barrel more than halfway, its attached needle carefully capped. I took it down to the lab, asked the techs to stain and culture the pus, and then compare it to the Staph bacteria we’d grown intermittently from Alice’s blood. For sure it would be identical. This was the stuff she’d been injecting into her own bloodstream to make herself sick. It was a dangerous game she’d been playing, Russian roulette for real, and it meant that her (potentially fatal) infection was the least of her problems. She was crazy. Crazy enough to risk killing herself just to get attention. There was no way I—or any psychiatrist—could cure that.
But I could make it worse. And, not knowing any better, that’s exactly what I did.
We were alone, in her room, the door shut to the corridor. I hadn’t done what you’re supposed to do when you have an important conversation with a patient. I hadn’t sat down next to her bed, met her at eye level, tried to make more personal contact. I stood over her, towering above, looking down. I hid the syringe in my closed fist. Then, slowly, I opened my hand in front of her face and showed it to her.
At first I said nothing. Neither did she, not even after I told her that the pus in the syringe showed sheets of Staph bacteria just like those in her blood. She didn’t feign innocence. She didn’t ask where I got the syringe. She didn’t accuse me indignantly of rifling through her private possessions. No, she didn’t say anything.
I pushed her. I demanded an explanation. I wanted to hear her confess, apologize. Instead, in a smug unemotional voice, she explained that she had developed a boil on her skin during one of her fevers and she had aspirated the pus herself into a sterile syringe to help the doctors identify the cause of her fever.
I thought I gave it to the doctors, she said with a shrug. I guess not, huh? and then she looked me straight in the eye.
I knew this wasn’t true. Under the microscope, we had found no white blood cells—human cells—in the syringe, proof that the pus hadn’t come from a person. It was a pure culture of Staph bacteria, grown in a petri dish, presumably in the hospital laboratory where she worked. Or, who knows? Maybe she grew the stuff at home, in an incubator in her bedroom. Anything was possible. She was nuts.
But she was good. She didn’t miss a beat. She simply shrugged again and said she’d aspirated the boil more than a week ago, so the white blood cells in the syringe would have lysed by now. That’s why you can’t see them under the microscope. The white cells are dead. Then she pointed to a place on her left arm, badly bruised from the multiple needle sticks she’d had for her many blood tests, here and in Frankfurt. It was here, the boil was here, she said, but you can’t see it anymore.
I wasn’t about to argue with her. I asked her to think more about this. I told her we wanted to try to help her. I recommended that our psychiatrists come talk to her. She said nothing. I told her that if she refused our help we would send her home in the morning. And, yes, I would have to tell her doctor in Frankfurt. She said nothing. I asked if she understood me. She simply turned away.
Late that night, I received a phone call at home from the intern taking care of Alice. Her temperature was 104 degrees. Her blood pressure was unobtainable. She was in shock, near death. We moved her to the intensive care unit, gave her large doses of IV antibiotics and powerful drugs to support her blood pressure. She made it through the night. In the morning the intern showed me what he had found in her bed after I told him about the syringe. It was another syringe, this one plunged empty, spittles of pus still visible at the bottom of its barrel. When they moved her into the ICU, they found the needle marks in her groin.
She’d had another one. When I found the first syringe, I hadn’t been smart enough to look for others. Out of spite, or whatever it was that motivated her, she’d shot the whole barrel of pus into her femoral vein after I’d confronted her. This huge bolus of virulent bacteria, injected directly into her circulation, had induced a catastrophic inflammatory response. Now she was alive, but barely. She would have critical care doctors taking care of her now, not psychiatrists.
I showed her. So then she showed me.
Alice lived in a world like no other. She knew what she was doing but she didn’t know why. She wasn’t a malingerer, someone who purposefully fakes illness or causes disability to achieve material gain. She didn’t even have a motive, not consciously anyway. All I had accomplished by confronting her, like an avenging prosecutor, was to make myself feel better at her expense. Once discovered, her back to the wall, she had no choice but to fight back the only way she knew how. She’d show me, even if it killed her.
No one knows how this happens. But almost certainly, Alice’s Munchausen psychopathology was about nurture, not nature. It’s not about biology. It’s about people feeling hurt, deep down. Abusive parents? Malicious peers? A talented, timid dreamer wasting away in a dying town? Who knows?
This was what worried me about Martha. I had just proved that I was way over my head with Alice, a patient who was consciously hurting herself for subconscious reasons. Was Martha hurting for subconscious reasons, too? If so, she might be even more of a challenge than Alice, one I certainly wasn’t qualified to meet.
And yet, if Martha’s pain was all about Fred, who better able to help than I? Was Martha hurting because she feared that Fred had known exactly what he was doing? If so, he would have known that, in killing himself, he was breaking Martha’s heart. Could Fred have done that? Mark’s theory about digitalis, impossible to prove, said emphatically, No, Fred didn’t do that. Could I cure Martha, then, simply by siding with Mark and telling her so? If it would help Martha, why not tell her I had screwed up with Fred?
But there it was again, the doctor’s golden rule: First, do no harm. At this point, it was equally plausible that Martha’s pain was caused by an undiagnosed physical disorder, nothing to do with all these psychological babblings. I even had an idea what that disorder might be. If I was right, it would be hard to prove—and even harder to fix. But if Martha’s problem was physical, the last thing she needed from me right now was some soulful confession about Fred’s death. That would only make her feel worse. Still learning, I had begun to see the wisdom of the old saying, inverted: Don’t just do something, stand there.
So that’s what I did. During Martha’s first two days in the hospital, I didn’t do anything. This was awkward but painless—both for Martha and for me. She seemed comfortable enough propped up in her hospital bed or sitting in her bedside chair. She didn’t ask for pain medicine, although she tired easily from the frequent parades of medical students, residents, and specialists who came in to interview and examine her. I stayed in the background, Martha’s attending physician-in-charge, content, even relieved, to share the burden of responsibility with my colleagues. For now, I was off the hook, my role mainly to clarify consultants’ opinions for Martha and her children.
John and Margaret, both patients of mine, hung on my every word. They were very worried, especially because Martha’s illness had followed so soon after Fred’s death. John, a psychologist, said something about how it never rains, it pours. Margaret kept a stiff upper lip in Martha’s presence but, outside her hospital room, broke down a few times. Mark was worried about Martha, too, but he seemed at least as worried about me. Mark didn’t mention Fred or our correspondence about him. But he questioned everything I said. He pushed me to reconcile each consultant’s findings with the others. As it turned out, this wasn’t easy to do.
The Vascular guys thought that poor circulation in Martha’s legs could explain her pain but she couldn’t walk even a few steps and they thought this peculiar. The cardiologists didn’t think Martha’s heart was the problem but they worried about it for other reasons. Along with her digitalis and other heart drugs, Martha took blood-thinners to prevent clots from forming in her enlarged heart. If Martha needed any invasive tests (such as the angiogram of her leg arteries that the Vascular guys had recommended), her blood-thinners would need to be stopped, thus exposing her to the risk of a stroke. The cardiologists also weren’t sure if Martha’s heart could handle major surgery, if it turned out that’s what she needed. The Anesthesiology guys agreed, rating Martha’s surgical risk from general anesthesia as high, an off-putting “4” on their risk scale of 1 to 5. The orthopedists agreed that the arthritis in Martha’s spine and hips and knees was bad but they doubted it was causing her inability to walk. They changed their tune when the Neurology guys raised the possibility of spinal stenosis, a narrowing of the spinal canal (usually caused by spinal arthritis) that pinches the nerves in the legs when the patient stands or walks. Could be, the orthopods said, but the only way to know was to perform a myelogram, an invasive procedure that requires a spinal tap and injection of dye into the spinal canal. Worse, in Martha’s case, the spinal tap and injection would have to be done in her neck, not her lower back, because her lower spine was so badly deformed by her arthritis. A cervical myelogram was a tough procedure even for young patients, requiring them to lie still on a hard table for a long time as the table tilted severely up then down, again and again, turning the patient on her head and then upright, to allow the dye to travel the entire length of the spinal canal and image it on X-rays. Many patients refused this procedure, especially when warned that one of the (rare) complications of cervical myelography was bleeding into the spinal cord. If this happened, it could cause the patient to become quadriplegic (even if she wasn’t taking blood-thinners, as Martha was).
Last but not least, on Martha’s second day in hospital came the Psychiatry consultants. Their conclusion: “Possible reactive depression. No evidence of major affective disorder. Cannot exclude the possibility that the patient’s current pain syndrome is related to somatization.”
Predictably, at the end of that second day, Martha was mad at me. She was worn out from all the consultations and tests. But the psychiatrists were the icing on the cake, as Martha put it. We were alone in her hospital room. Her children had gone home for the evening, resting up for the family conference we had arranged for the next morning to discuss what to do, given the conflicting opinions and risks raised by the various consultants.
Martha just shook her head.
Do you know what they asked me, Brendan?
The Psych guys? I can guess.
They asked me about Fred.
Mmm.
They asked me how I felt about Fred’s death.
You know what I told them?
What?
I told them I loved Fred from the first time I met him. Fifty-seven years ago. I told them he was the best person I ever knew. I told them we were happy together for a long, long time. And now he’s gone.
Yeah.
So I asked them: How do you think I feel?
Apparently, this had ended Martha’s conversation with the psychiatrists. They wouldn’t answer her question, so she didn’t answer any more of theirs. They told her they’d be back to see her again tomorrow. Martha said, I don’t know what’s making me hurt, Brendan, but it’s not Fred. Let the poor guy rest in peace, for Pete’s sake. I’ll do whatever you say but let’s skip the psychiatrists, okay?
We agreed to talk more about it in the morning.
But Martha couldn’t sleep that night. She told her nurse that she was hurting, even just lying in bed. She couldn’t get comfortable. Around midnight, the nurse called the intern, who checked Martha, found nothing new, and ordered some pain medicine and a mild sleeping pill. According to the nurses’ notes, Martha then slept fitfully through the night.
It was early when I came to see her. The night nurses were huddled with the day nurses, doing their change-of-shift report. Martha was alone. The smell in her room was suffocating. Fistfuls of wet feces dripped off the walls around her bed. Her arms and hands and nightgown were covered with it. Her bed was wet with urine, soiled with excrement. She was tossing shit all around the room. She cackled when she saw me.
See that one, Fred? I got him! Oh! Watch out! Fred! Get your head down!
Martha . . . ?
You go, Fred. You go find Electra. I’ll stay here. Oh! Oh! Look there! So many . . . so many Japs!
Martha, I’m not . . .
Fred, you promised me! You said you would take care of the babies! When I’m gone, the babies . . .
Now she was crying, her shoulders shaking.
I told you! Fred, I told you! It’s not your fault! It’s her own damn fault! Who does she think she is, flying around in men’s pants? It’s her own damn fault!
I don’t . . .
She’s gone, Fred! She’s gone! Don’t you see? It doesn’t matter anymore. It’s not your fault!
Sobbing, Martha buried her head in her hands, smearing her face with feces. She gasped.
I ran out to the nurses’ station, got some help. We had to lift Martha out of her bed to clean her up, change her sheets. She fought us, screaming at Barbara, one of the nurses.
See what you’ve done? You did this! Fred didn’t do it! You’re a selfish bitch! All you care about is yourself!
Barbara, a pretty young woman, was stunned.
Mrs. Coover, I don’t . . .
Fred! You saw it! She did it!
Martha, I’m not Fred . . .
Now Martha was sobbing again, her head thrown back in despair.
I don’t care! I don’t care! You want to go with her, you go ahead! She’s crazy, Fred! Amelia Earhart? So what? She’ll kill you, too! The babies, Fred! You promised me you’ll take care of the babies!
A couple of hours later, I didn’t tell Martha’s children about the mess or the real reason we’d moved her to a different room. What they saw for themselves was bad enough. Martha was drowsy now but still delirious from the pain medicine and the sleeping pill she’d received the night before. She didn’t recognize her children at all.
John frowned. Margaret began to cry. Mark didn’t know what to think.
Now Martha was just like Fred.
• • •
Delirium can happen to anyone. And it does, frequently.
Today, at least 20 percent of the 12.5 million people aged sixty-five years or older who are hospitalized annually in the United States develop delirium. In some hospitals, the incidence of delirium exceeds 50 percent. This problem adds billions of dollars to annual Medicare costs and causes untold suffering for patients and their families. It also kills people. In fact, the in-hospital mortality rate for patients with delirium ranges from 22 percent to 76 percent, higher than the death rate for patients with a massive heart attack or overwhelming sepsis. There are many reasons for this stunning statistic, including the fact that some deathly ill patients become delirious because they are deathly ill. But, in many cases, delirium is preventable; for this reason, national hospital accreditation agencies have recently mandated that prevention and treatment of delirium become an essential quality improvement priority in all U.S. hospitals.
Better late than never. This has been going on for a long time.
Nearly fifty years ago, Z. J. Lipowski called delirium the “Cinderella” of American medicine: “taken for granted, ignored and seldom studied.” He noted that delirium often seems harmless enough, as when “a delirious patient walked into a hospital emergency room and was found fumbling in a refrigerator where drugs were kept; it turned out he believed himself to be at his house and was looking for a bottle of beer.” But other cases that Lipowski described were not so amusing:
A middle-aged lawyer, hospitalized for acute pancreatitis, wrote a note to his wife urging her to bring him his gun to the hospital. . . . It turned out that the patient had hallucinated [intruders] entering his room through a hatch in the ceiling. They [his doctors] marched around his bed making threatening gestures. He wanted a gun to defend himself.
A young woman hospitalized for a viral infection . . . complained . . . about anxiety and nightmares. These complaints were ignored and . . . the patient wandered away from her bed, slipped into a laundry hatch on the ward and fell several floors, sustaining multiple fractures of the spine and legs. . . .
A barbiturate addict . . . mistook her [hospital] room for a prison cell from which she expected to be taken to be executed. She was caught opening a window [high above street level] in an attempt to escape.
Yet, for every one of these frightful cases, Lipowski noted that there are many more “ ‘good,’ i.e., quiet and compliant, delirious patients [who] do not bother anybody.” Like Fred, these patients “hide their delirium under a façade of pleasantness, cooperativeness, or by parrying with humor.” How common is this?
Today, the prevalence of delirium among very elderly people in the United States (eighty-five years and above) who are not in the hospital is 14 percent. One in seven of the 6 to 7 million very elderly people living in the community suffers from delirium. Most of them “hide” it, one way or another, eluding discovery like Fred.
Delirium occurs when patients with particular predisposing conditions are afflicted by specific precipitating events. The most common predisposing conditions are elderly age, prior cognitive dysfunction (especially dementia), daily use of psychoactive drugs, immobilization, and visual or hearing impairment. Because these conditions are increasing in U.S. society today, so is the incidence of delirium. But even a young healthy person may become delirious if the precipitating event is severe enough. For example, classic medical experiments about the effects of fever showed that artificially raising body temperature to 104 to 107 degrees Fahrenheit caused delirium in more than half of normal young human subjects. But it is the interaction of susceptibility (predisposing conditions) with precipitating events that results in most cases of delirium. (The most common precipitating factors are drugs, infections, chemical imbalances, sleep deprivation, and surgery.)
Anticipating these interactions can prevent delirium before it happens. Instead of sleeping pills, patients in the Yale Delirium Prevention Trial were given warm milk or herbal tea, relaxation tapes, and bedside massages; nighttime noise in their hospital corridors was reduced. These and other “low-tech” commonsensical interventions reduced the incidence of delirium in the Yale patients by one-third. Similar preventive studies have reduced delirium in elderly patients hospitalized for hip fracture, one-half of whom developed delirium (lasting an average of three days) if they didn’t receive such interventions.
Although targeted interventions can prevent many cases of delirium, they require hard work and cost real money. The average additional cost of labor and equipment to prevent one case of delirium in hospital during the Yale study was $6,341 (in 1999 dollars). Even if we make this investment, the prevalence of delirium likely will continue to rise, given the increasing life expectancy and prevalence of dementia in elderly U.S. adults. Although one-third of delirium cases in hospital may be preventable, the remaining two-thirds are not. Whether precipitated by the patient’s acute illness (for example, an infection) or its treatment (drugs or surgery), delirium is an unavoidable outcome for many patients in hospital. For this reason, although prevention is desirable (and, in some cases, feasible), early recognition and treatment are equally important.
The Achilles’ heel of such efforts is that the early recognition of delirium— by definition, an acute change in the patient’s mental status—requires familiarity with the patient’s usual mental status. In acute care hospitals, where so many patients are cared for by doctors and nurses who have never met them before, hospital staff will be far less likely to recognize the telltale changes in affect or behavior that herald the onset of delirium. Worse, when elderly hospitalized patients develop florid delirium—agitated, wandering, disruptive behavior—hospital staff often assume that the patient has dementia (that is, long-standing, irreversible cognitive impairment). A vicious cycle then ensues: Psychoactive drugs (tranquilizers, antipsychotics, sleeping pills) are given to calm the “demented” patient’s agitation, which drugs often only make the patient’s delirium worse.
It happens all the time.
When my father was eighty-five years old, I flew him to Chicago (where I worked) to undergo risky lung surgery. I knew that Dad’s risk of developing delirium in hospital was high; he had become floridly delirious the last time he was in the (same) hospital when he had major surgery to remove a cancerous kidney. We took precautions to prevent it, but, immediately after his (successful) lung operation, I received an urgent call from the head nurse to come see Dad in the surgical ICU. When I arrived, both of his hands had been restrained (painlessly) with soft straps to prevent him from pulling out his IV or bladder catheter or chest tube, all of which Dad still needed immediately after surgery (but none of which he wanted). In protest, Dad had told the head nurse and everyone else in the ICU that “your commanding officer does not have the prerogative, under the terms of the Geneva Convention, to issue orders pertaining to me or my troops.”
Dad recognized me when I arrived in the ICU but he said, spluttering with exasperation, “What the hell kind of army are you running here, Bren?” Dad was convinced that he was the commanding general of the South Vietnamese Armed Forces; he was not at all pleased that “the Americans are throwing their weight around again.” Because I was wearing the same “uniform” (a long white coat) as most of the other “troops” in the ICU, Dad thought that I was an American army officer. For the next two days, Dad’s delirium was managed successfully by minimizing the drugs that had precipitated it—and by suggesting that the hospital staff salute whenever they approached him.
Dad’s delirium was diagnosed quickly and treated with dispatch because I knew him. Like many other members of our Greatest Generation (he served in World War II, not Vietnam), Dad was normally reserved and polite, a good listener, never one to call attention to himself. His behavior when delirious was dramatically different from the “real” Dad. Interestingly, the content of Dad’s delirium had an internal logic of its own (like some dreams): The medical staff in the ICU was indeed an allied foreign “army” pledged to help Dad through a life-or-death battle. And Dad’s officious behavior when delirious reflected his proclivity, when “himself,” to state his opinions authoritatively (even when there was plenty of room to disagree). Only someone who knew Dad could see these tangential connections between his normal and delirious behavior.
But even when the patient has one doctor who knows him well, delirium can easily elude detection. When Dad developed delirium for a third time, I was smarter than before—but not by much. In the aftermath of his lung surgery, we reduced Dad’s daily medications to virtually none. From time to time, however, he would call me in Chicago and ask me to phone in to his local pharmacy on Shelter Island a prescription for an antibiotic. Dad’s bladder cancer and catheter caused symptoms intermittently (bleeding and urinary discomfort) that resembled symptoms sometimes caused by a bladder infection. A retired physician, Dad wanted to “stay ahead” of any possible infection by treating it early. This seemed to me harmless enough. In fact, I suspected that the antibiotic had a placebo effect on Dad; he invariably reported that it quickly made him feel much better. But, after several requests for these prescriptions, I discovered just how much of a placebo the antibiotic really was: It made Dad high. (Mild euphoria is one of the “quiet” forms of delirium.) My initial reaction was permissive—given Dad’s depressing medical condition, I figured he could use a few “highs”—but soon it became clear that the drug also slurred his speech, unsteadied his gait, and accentuated his irascibility. I stopped the antibiotic and tried to find other ways to lighten his load, give him some laughs. (Because Dad was legally blind, audio books and comedy shows on the radio helped the most.) But none of them matched the high he got from that antibiotic. When I took it away, he missed it.
I had missed it, too. So had the local pharmacist. Neither of us knew that this particular antibiotic could cause delirium. In fact, any drug can do it. Any drug. Little wonder, in our “pharmaceutical” society, that so many old people today fall and break their hips.
Or lose their marbles.
• • •
For those next few days, Martha’s delirium persisted. If we were going to pursue a physical cause of her symptoms, she needed a myelogram. But, given the risk and discomfort of that procedure, we needed her permission to do it, and she was in no condition to consent to anything. Most of the time she was sleepy or quietly confused, especially during the day, but at night she drove the nurses crazy with her agitation and hallucinations. That first night her children took turns staying with her in her hospital room, hoping it would help. But all it did was scare them even more. The next night, they stayed away. It can take a few days, I told them, for the effects of the drugs to clear.
So we waited. While we did, the orthopedic and neurological consultants coalesced around the spinal stenosis hypothesis as the best explanation for Martha’s symptoms. Nerve pain is the worst pain of all. If the nerves to Martha’s legs were being pinched every time she stood to walk, it made perfect sense that she was refusing to get out of her chair; it would hurt like hell. If this was her problem, strong pain medicine clearly wasn’t the answer; the resulting delirium would be even more debilitating than not being able to stand or walk. We couldn’t just treat Martha’s symptoms. We had to find the cause. All agreed that the myelogram was the logical next step.
But if we found the cause—if the myelogram proved the diagnosis of spinal stenosis—what would we do? In those days, surgery for this condition required a team of orthopedic surgeons (experts about the bones and ligaments of the spine) and neurosurgeons (experts about the nerves and spinal cord). It was a big deal: complex, lengthy surgery, risky for any patient. But an eighty-year-old woman with a bad heart who needed blood-thinner drugs? Who, delirious and bedridden, now looked like hell? The cardiologists and Anesthesia guys didn’t say much; they just rolled their eyes, reiterated the risks, and waited for the rest of us to decide.
It was the radiologists who brought us all together. They said we’re not doing the myelogram unless we know it will make a difference. Why put the patient through the risks of a cervical myelogram, Peter Spiegel asked me, if you’re not going to fix what you find? Spiegel, Dartmouth’s chief of Radiology, was right about this. And even if I had thought he was wrong, I knew I couldn’t convince him otherwise. Spiegel was an old-fashioned radiologist, one who saw himself as an integral part of a team trying to do the right thing for every patient. He was proud of radiology’s remarkable, and growing, contributions to scientific medical care. In Spiegel’s view, radiologists weren’t simply highly paid technicians who interpreted body images to help the “real doctors” make diagnoses and plan treatments. For him, radiologists were real doctors, too; they also needed to see the big picture, understand the complexities of the patient’s problem, to decide how best they could help. Spiegel refused to let the internists or the surgeons take him (or any of his radiologists) for granted.
I had learned this lesson several years before when caring for a patient with life-threatening pulmonary embolism (blood clots in the lungs) who wasn’t responding well to treatment. I was worried, not only because the patient was a medical malpractice attorney from Washington, D.C., but also because I wasn’t absolutely sure I had made the correct diagnosis. In the middle of the night, I asked Spiegel (the on-call radiologist) to come back into the hospital to perform a pulmonary arteriogram, a difficult invasive procedure not often done (but the only way to be certain about the diagnosis). After listening to my dilemma on the phone, Spiegel agreed to get out of bed and spend most of the night in the hospital on one condition: if I agreed to be there with him. He didn’t need me (and I couldn’t help him) to do the arteriogram test itself. Spiegel insisted that I have a sleepless night, too, because he wanted to find out how badly I thought the patient needed the procedure—right now, at midnight. As it turned out, the arteriogram made all the difference for the patient, and not a minute too soon. Spiegel and I both learned some things that night.
So now I couldn’t just stay on the sidelines, waiting for the specialists to do their thing with Martha. I had to step in, orchestrate their various opinions and risk assessments and leanings. While we all waited anxiously for Martha’s head to clear, I met repeatedly with the orthopods and the neurosurgeons and the cardiologists to get consensus about what to do. We needed a plan. We needed a commitment, shared by the whole team: Go or no go?
Every day, Mark asked me about Martha’s digitalis. He knew she needed it, an essential medication for her heart condition. I reassured him that we had stopped all “psychoactive” medications, including the pain medicine and sleeping pill that seemed to have precipitated Martha’s delirium. But, each day, Mark questioned whether we were doing enough. I sympathized—how could I not?—but I didn’t stop Martha’s digitalis. She had used it for years and she needed it now more than ever. But this didn’t make my wait any less fretful.
After three days of delirium, Martha seemed herself again. She still looked like hell—seventy-two hours of hallucinations, agitation, and sleep deprivation take a lot out of you at age eighty—but she knew where she was, she knew me and her children. It took a while to explain to her how she had lost three whole days but finally she took our word for it. The surgeons and cardiologists didn’t like what they saw, but, in the end, they agreed to give the myelogram a go because they took Martha’s word for it. In fact, as it turned out, it wasn’t just that they believed Martha. They believed in Martha.
Dick Saunders, the chief of Neurosurgery, and Pete Hall, the orthopedic surgeon on the case, agreed that spinal stenosis could explain Martha’s pain, but the only way to know for sure was to see whether Martha improved after surgery. Even if the myelogram test could be performed safely—and even if it clearly showed stenosis of the spinal canal—this wouldn’t prove that spinal stenosis was the cause of Martha’s pain. In the past several years, improved CT scan machines had shown that many patients—especially elderly patients like Martha with severe arthritis—have stenosis of the spinal canal that causes no symptoms at all. Merely seeing a narrowed spinal canal on a myelogram doesn’t mean it needs fixing.
In the end, what sealed the deal was common sense. Saunders and Hall, the surgeons, wanted to know one thing: Why now? Martha had had arthritis in her spine for decades, but she began experiencing her current symptoms just a few weeks ago. Why now?
The surgeons couldn’t ask Martha, so they asked her daughter, In the time leading up to your mother’s current illness, did anything unusual happen that might explain a worsening of her arthritic spine? It seems so obvious, so easy, after the fact. But asking the right question at the right time needs knowing why it’s the right question—and sometimes that’s not easy at all. After Margaret remembered that Martha had taken a fall eight weeks ago in her bathroom, we asked the radiologists to reconstruct the computerized images of Martha’s spinal CT scan and saw a fracture through one of her spinal joints. These images couldn’t show for sure whether she had spinal stenosis—only the myelogram could tell us that—but they showed why Martha might have developed the symptoms of spinal stenosis so recently. (Afterward, Margaret said it never occurred to her to connect the two: Martha’s back pain from her fall had improved before her legs ever started hurting.)
This was good enough for the surgeons. Now it all made sense. So, if the myelogram showed something fixable, they agreed to try to fix it. As they delivered this opinion to Margaret, both surgeons looked admiringly at Martha, dozing fitfully again. If your mom gutted it out at home for eight weeks with a fractured spine, Saunders told Margaret, and she never even asked for help, the least we can do now is give her the benefit of the doubt. Let’s do this.
The next day Martha was higher than a kite again, stoned on pain medicine. Spiegel and his radiology team had had to give her lots of drugs just so she could tolerate the contortions they put her through during the myelogram procedure. But she had done well, no bleeding or other complications.
Mark wanted to see the pictures himself. Saunders and Spiegel showed him what a normal myelogram looks like. Then they showed him Martha’s. Mark didn’t need any convincing. An engineer could see as well as a neurosurgeon where the nerves to Martha’s legs were being pinched inside the spinal canal, the column of X-ray dye twisted and constricted by a perfect storm of old degenerated discs, protuberant arthritic bones, and the latest insult: scarring, swelling, and slippage around that recently fractured spinal joint.
What Mark wanted to know was whether Saunders and Hall could fix it. And whether Martha would survive the operation.
The answer to your first question is Yes, I think so, Saunders said.
And will she make it through the surgery? Mark asked.
I can’t answer that, Saunders said, and neither can anyone else. Clearly, there are major risks. But if your mom decides to give it a go, we’ll do our best.
We were lucky to have surgeons like Saunders and Hall, skilled technicians who were willing to operate on high-risk patients if, on balance, this made sense to the patient. The surgeons at Dartmouth were not unique in this regard. The post–World War II surgical culture had produced many surgeons willing to “do our best” even when they knew that their best might not be good enough. But this culture had begun to change recently. Many surgeons wouldn’t have touched Martha with a ten-foot pole. She was old, she was complicated, and the odds were high that she wouldn’t do well. Even if the surgical procedure itself went well, Martha could easily end up crippled, stroked out, or dead. Many surgeons didn’t want their fingerprints on cases like those. (Insurers had begun talking about publishing “report cards” of surgeons’ success rates to help patients decide who the “best” surgeons were. An unintended consequence was that many surgeons then began shying away from the high-risk cases.) But for Saunders and Hall and many other Dartmouth surgeons it wasn’t about ego or statistics showing their operative “success rates.” It was all about the patient.
I wasn’t a surgeon but I knew how hard this could be. You don’t spend the best years of your life working tirelessly to become a surgeon so you can use your hard-won skills on hopeless cases. You do it because you want to fix people; you want to help them. So, when you ask a surgeon to join a battle that might lose the war, it can be a hard sell. Had Martha’s case been hopeless, even Saunders and Hall would have refused to operate. Surgery, like all medical treatment, is about probabilities; it takes guts—and a special kind of selflessness—to offer a patient hope when surgical success is improbable but the nonsurgical alternatives are even worse.
Just a few weeks before, I had asked the heart surgeons to do this for Joe Blackburn. Joe’s chances had been even worse than Martha’s, but the principle—and the admiration I felt for my surgical colleagues—was the same.
Joe was a retired oil executive who had moved to Vermont five years ago. He was a tall, slow-talkin’ Texan who’d had his aortic valve replaced ten years before by Dr. DeBakey’s famous surgical team in Houston. He was otherwise a healthy, happy-go-lucky guy who loved to fly-fish and hunt in the Green Mountains. Until this past summer when he began to feel tired, he’d never needed more from me than an occasional checkup. Just a few weeks later, Jim was in Dartmouth’s coronary care unit, dying.
At first, it hadn’t seemed serious at all. Over the summer, Joe had looked okay, his heart sounded fine, and he had no fever or abnormal blood tests. We tried stopping several medications he took that can cause fatigue as a side effect, one at a time, to see which one was making him tired. But when he came back a few weeks later, he looked terrible—gaunt, fearful, ten years older. I put him in the hospital. His prosthetic heart valve was infected—probably it had been infected for weeks—and now, despite the appropriate antibiotics and maximal medical therapy, he was failing. His infection, called subacute bacterial endocarditis, wouldn’t clear. Fluid was backing up into his lungs. His kidneys had begun to fail. His only hope was to surgically replace his infected heart valve with a new one, an operation that rarely succeeded because the new valve, when sewn into ratty infected heart tissue, often became infected, too. In Joe’s case, the chance of successful surgery was maybe 10 percent. But it was his only chance, because without surgery his probability of survival was zero.
As usual, this all came to a head late at night. Joe had gone into pulmonary edema—he was drowning in his own body fluids—and we’d had to put him on a breathing machine. He was awake but couldn’t talk with the breathing tube down his throat, so he wrote notes to me and his wife to answer our questions about what he wanted to do. We could snow him with morphine and he would die painlessly or the surgeons could take him to the operating room tonight, where the ultimate outcome would likely be the same. I could offer Joe this choice only because Bob Sargent, the cardiac surgeon on call, had just told me over the phone, We’ll give it a shot if he gives the okay. Just make sure he and his wife understand the odds. Call me back.
Joe made it out of the operating room but died twenty-four hours later. His wife was expecting the worst—Sargent had prepared her—but she was grateful beyond words. She told Bob that DeBakey couldn’t have done better and Sargent was grateful for that. Joe became a negative statistic in Sargent’s surgical success rate for aortic valve replacements. But Sargent had known this was likely to happen when he agreed to operate. It was Joe’s only chance, so Sargent put Joe’s interests ahead of his own.
Saunders and Hall could have said no to Martha, too. Too risky, they could have said. But they didn’t say that.
Instead, they asked me: What does Martha want to do?
Martha had given the go-ahead for the myelogram. But now she was delirious again from all the drugs she’d needed to get her through the procedure. So we waited again.
Her days of delirium—and the uncertainty about her future—had been torturous for her children. Lying in her hospital bed, disheveled and confused, Martha looked even older than her eighty years and much frailer. Her grip on life itself seemed no less tenuous than her grip on reality. She had a catheter in her bladder now, her urine draining into a bag by the side of her bed. The nurses rolled her over frequently and checked her, cleaning her up when she soiled herself. She had intravenous lines in both arms, one to hydrate her with fluid and nutrients, the other to give a continuous infusion of blood-thinner for her heart. Her arms were black and blue from all the blood tests. An oxygen cannula in her nose dangled awkwardly from her ears. To Margaret and Mark and John, Martha not only didn’t act like their mother, she didn’t look like her either.
Margaret was terrified that her mother would die, either from the surgical procedure itself or from postoperative complications. As Margaret watched Martha now, so diminished in her delirious state, she could feel her mother slipping away. Would it be so bad, Margaret asked me, if Mom didn’t have the operation, if she had to live a bed-to-wheelchair existence? Her arthritis is pretty awful anyway, Margaret reasoned, and she couldn’t walk much even before her spine got this bad. Why take the risk of surgery? She might have some good years left without the operation.
Mark saw it differently.
Look at her, he said to Margaret. This is Mom’s future? If she can’t walk, how will she get to the bathroom? She’ll wind up with a permanent catheter, infections, more drugs, maybe this horrible confusion all over again. She’ll go stir-crazy, confined to that house, like she does every winter even now. Mom has always valued her independence more than anything else. She’d be miserable knowing she’s a burden. She’d rather be dead . . .
Margaret’s eyes grew wide.
Mark!
. . . like Dad, Mark said.
Mark! How can you say that!
John, the psychologist, stepped between them. Fighting about it won’t help, he said. You’re both right. You’re both right.
John looked at me.
So what do we do, Brendan?
We don’t do anything, John. It doesn’t matter what we think. What matters is what your mom thinks.
So, a few days later, when Martha was Martha again, we went through it all with her. The diagnosis: likely correct, but uncertain until she walked again. The surgical option: dangerous, a difficult and prolonged recovery, an unclear prognosis. Her many medical risks: infection, heart failure, stroke, bleeding, delirium, the unknown. The nonsurgical options: physical therapy, a wheelchair, live-in help, some of Mark’s gloomy scenarios. And, finally, the generic salve about there being “no right or wrong answer here.”
Martha, her wry witty self again, listened carefully to all this, occasionally clucking “Lucky me!” or “Won’t that be fun!” She asked a few pointed questions. She asked her children what they thought. They told her. Then she turned to me, a twinkle in her eye.
Well, here we are again, Brendan. Another fine mess I’ve gotten you into. I think I know what your answer will be but I’m going to ask anyway . . .
Martha . . . I began.
What would you do, Brendan? If you were me?
I wanted to tell her. I’d never thought the doctor should merely lay out the options and then let the patient decide. That’s what doctors are for: to help patients decide. I knew Martha wouldn’t make her decision purely on the basis of my recommendation, as some patients tend to do. She just wanted to know how I saw it. She would weigh my opinion together with the many other factors she considered. But she was struggling. She’d been through an awful lot. Her own children were divided, their emotions fraught. Martha knew this might turn out badly whatever she decided and she didn’t want guilt or regret or recrimination to be the legacy she left her family, not after what had happened to Fred. In asking my opinion, Martha was looking for a crutch, a helping hand. A friend.
I couldn’t do it. Not there, not then, Margaret and John looking on, holding their breath, Mark staring me down.
You’ll want to sleep on this, Martha. It’s your call.
But late that evening I returned. Her children had gone home, awaiting Martha’s decision. I had come back to make sure she wasn’t flying again. Delirium can be intermittent, punctuated by lucid intervals when the patient appears completely normal. I needed to make sure that Martha had fully recovered—and that her decision, whatever it would be, was clearheaded. Although I tried to conceal my examination of her mental status as simple chitchat, Martha knew I was checking her out to see if she had all her marbles.
She was clear as a bell. This established, Martha smiled her wry little smile and looked around her private room.
So, finally, we are alone, she said.
Mmm.
She looked me straight in the eye.
It would help me to know, Brendan. If you were in my shoes, what would you do?
I wanted to help. I thought I owed her that much. So I told her what I would do.
The next morning, Martha signed the surgical consent forms. Margaret was in tears. She and John gave Martha a hug. Mark looked as if he hadn’t slept much. He seemed a lot less sure of himself than he had before.
I suspect that Martha had been leaning toward surgery before I leaned that way, too. But I didn’t ask her about this. And she didn’t tell. She kept it to herself, right to the end.
• • •
One year before Fred died, David Hilfiker, a family physician working in rural Minnesota, electrified the medical profession by confessing serious, sometimes fatal errors he had made in caring for his patients. Published in the New England Journal of Medicine, “Facing Our Mistakes” describes in heartrending detail Hilfiker’s discovery that he has mistakenly aborted a live thirteen-week-old fetus (whose parents badly wanted the child) and his struggle to deal emotionally and spiritually with his guilt about it. Clearly a competent, dedicated, and caring doctor, Hilfiker finds that he cannot forgive himself for his error, despite “reassurances from the pathologist that it is statistically ‘impossible’ for four consecutive pregnancy tests to be negative during a viable pregnancy,” the facts in this tragic case. Devastated, he concludes that no post facto reconstruction of the events “can obscure the hard reality: I have killed their baby.”
Worse, after confessing his culpability in this and other cases, Hilfiker admitted:
The medical profession simply seems to have no place for its mistakes. There is no permission given to talk about errors, no way of venting emotional responses. Indeed . . . I lapse into neurotic behavior to deal with my anxiety and guilt. Little wonder that physicians are . . . defensive about our judgments . . . blame the patient or the previous physician when things go wrong . . . yell at nurses for our mistakes . . . have such high rates of alcoholism, drug addiction, and suicide.
At some point we . . . need to find healthy ways to deal with our emotional responses to those errors.
A year later, Hilfiker had left medical practice. He took time off, wrote a book. Its conclusion:
Ultimately, I believe there is no solution to the problem. All of us who attempt to heal the wounds of others will ourselves be wounded; it is, after all, inherent in the relationship. . . .
We can either fight against the pain, and in so fighting, bring ourselves to a numb cynicism or a fragile despair, or we can accept it, become one with it, and allow it to minister to others.
For centuries, medicine had been considered more than a “helping profession”; it was a vocation, akin in many respects to religious ministry. But, in our increasingly secularized society, even the (nonreligious) “Samaritan” role of doctors—empathizing with and helping others, selflessly—has been devalued, sometimes even ridiculed in the ascendant business culture of medicine. This new culture has even changed our vocabulary. Doctors and nurses have become “providers” of medical care, itself now a “commodity.” Patients have become “customers,” the “consumers” of medical care.
Yet health providers still feel guilty when things go wrong with their patients. Guilt is about self-disappointment, the anguish I feel when I fail to live up to my own standard of what I ought to be. This feeling is a moral phenomenon: Guilt is all about “ought”—one’s sense of good and bad, right and wrong. But doctors’ mistakes are not moral failings (except in very rare cases in which a doctor’s misdeed is intentional or callous). Surely these mistakes deserve discovery, remediation, and, if feasible, prevention. But do they require forgiveness? “We forgive the wicked,” a wise man said, “but we excuse the ignorant.” Making a mistake, even a “stupid” mistake, doesn’t make a doctor wicked.
Nevertheless, many doctors, like Hilfiker, have become the “second victim” of medical error. Some of us, guilt-ridden and gun-shy, may be too far gone to help.
Fewer than 10 percent of all U.S. medical school graduates today become primary care physicians for adults, a precipitous (and accelerating) decline from a few decades ago. Hardest hit have been the ranks of family medicine doctors (a group that has contributed disproportionately to the care of patients in underserved areas). Many of these doctors, especially those who serve in rural communities where specialists’ help is far away, suffer the same wounds and bear the same burdens that David Hilfiker bore decades ago. These folks, in my view, are the unsung heroes of American medicine. The breadth of their responsibilities—they deliver babies, staff emergency rooms and ICUs, perform minor surgery, help dying patients pass peacefully—makes theirs the most demanding job any doctor can do. It can also be the most rewarding job—emotionally, not financially.
And yet we’re losing the doctors who do this work—and we’re losing them fast. Simply throwing more money at them won’t fix this. As a society, we must also encourage them, appreciate them, thank them for their service. And, yes, sometimes, we must forgive them, too.
• • •
I left Dartmouth not long after the events described here. I didn’t uproot my family and my work because I couldn’t live with the mistakes I’d made. What happened to Fred and Martha became a part of me, a part I didn’t want to forget or deny. Certainly, I wished I had done better for them. But, for me, the question became how I could do better, having learned that even dedicated, gifted doctors inevitably harm some people in the process of helping others.
Perhaps later than some in my profession, I had seen how utterly audacious are the ambitions of modern medicine. To unravel the mysteries of biology and human disease—the product of eons of evolution—and then to dare to intervene? Mess with Mother Nature? Have the balls to battle the dragon of death? This was hubris beyond hubris, the stuff of Sophocles and Icarus. For me, now a scarred veteran in a brave new post-Hippocratic world, medicine’s venerable first principle had become an empty shibboleth, an inside joke. First, do no harm? Oh, please. Of course, we do harm. If we didn’t do harm, we couldn’t do good.
I gave up primary care, largely because I had too much respect for it to think I could do it well part-time. I took a job as the chief of medicine at one of the University of Rochester’s teaching hospitals, where my other responsibilities precluded full-time clinical practice. Naïvely, I thought I could still be a “real doctor” while devoting a lot of my time to teaching, administration, and research. For the first two years, I managed a small panel of my own primary care patients. These folks were easy to find and happy to have me; our hospital served Rochester’s impoverished inner city, where many people had no doctor at all. But I found out soon enough that I was kidding myself. Unavailable to my patients too often, including times when they needed me most, I found I couldn’t do the job of a “real doctor” part-time.
Fred and Martha helped me through this transition. They had taught me that it was the medical care “system” that had failed them, not just one doctor. And so, I, together with many colleagues, tried to build a better system for inner-city Rochester. We created a neighborhood network of about twenty primary care practices with a shared clinical information system. We funded patients’ preventive health care with millions of dollars in government research grants. We hired and trained inner-city folks to help their neighbors “navigate” our health care system more effectively. As a result, more African-American women got mammograms. More black and Latino babies got immunized. More elderly and ill folks talked to their doctors about end-of-life care. And my own former panel of primary care patients got doctors who were always there for them. I maintained my own clinical skills by carving out stretches of time to work on the hospital’s busy inpatient service. I became a “hospitalist”—the name itself wouldn’t be invented until several years later—the same role I had hoped Paul would pioneer at Dartmouth. Inner-city Rochester was a long way from the Ivy League and Fowler House, but my years as a real doctor had prepared me well for my new role in my new place.
I lost touch with Margaret and her family until several years later, when she wrote me a letter after I had moved to Chicago to become chief of medicine at Cook County Hospital, the famous (and sometimes infamous) “mother” of American public hospitals. In its heyday the largest and busiest hospital in the United States, County was a huge, sprawling enterprise that struggled to care for the vast underserved patient population of Chicagoland’s poor and ethnic minorities. Even Margaret, still living in bucolic Vermont, knew that County must be, as she wrote, “quite an adventure.” She enclosed photos from a recent family wedding. There was the flower garden in front of Fred and Martha’s house. Those twin Adirondack chairs. Mountains in the distance, the river valley far below, the high meadow of my dreams. One of the photos is a group portrait of twenty-eight people that includes all of Fred and Martha’s children, grandchildren, and great-grandchildren. (Margaret provided a “key” to the photo that identified them all, from grandson Fred to great-granddaughter Molly.) Martha herself is in the back row, lovely as ever in a violet dress and a string of pearls, standing next to Mark. No wheelchair for Martha even now, almost ten years after her spine surgery. Nearing ninety, she didn’t look it. She was smiling ear to ear, cracking a joke just as the photographer said cheese.
The only one missing was Fred.
I wrote back, told Martha and Margaret a little of what I was doing in Chicago, how my experience with Fred had opened my eyes to new challenges and opportunities. As I had done in Rochester, I was trying to improve the system in Chicago, too, working with a team of smart, dedicated colleagues. A big part of this involved learning how to deliver care more cost-efficiently—we were dealing with limited resources, staggering demand, and political gridlock in the County government—all the while trying to preserve the personal, trusting doctor-patient relationships that had made County Hospital a special place for generations of Chicagoans. Working together, we were learning to embrace what we didn’t know, admit our ignorance and mistakes, share these lessons with each other, all in an effort to do more with less. We won some and we lost some. I told Margaret and Martha that I thought Fred was looking over my shoulder.
Time passed. As my own mother began to lose her memory, when it became clear that Mom had Alzheimer’s disease, I often thought of Fred. Mom’s strange behavior over the previous several years—the occasional gift that seemed odd, inappropriate; those letters or cards that weren’t quite right, not like Mom at all—finally made sense to me, in hindsight. So I wondered, looking back, when did it begin? I could only venture a guess. Alzheimer’s dementia is insidious. The early clues are subtle, insubstantial, but always, if you look back, you will find them. And when I looked back at Mom, I often found myself looking back at Fred, too. Had Fred survived, would Martha have looked back one day—remembering those phone calls and tangential conversations and unshoveled snow—and concluded: Yes, that was all part of it but, in hindsight, that wasn’t the beginning. Had Fred survived—and had his own worst fears about losing his marbles come true—would Martha or Mark or Margaret have realized, as I did with my mother, that Fred’s dementia had really begun long before then?
A few years later, Margaret wrote to me again. Martha had died, peacefully at home, surrounded by family. Margaret wanted me to know that Martha had missed me, loved me, even to the end. About Fred, she wanted me to know how “all of us close to him felt tremendous guilt [about his death]; yours perhaps more profound because you were ‘supposed to know more.’ I have spent a lot of energy trying to sort it all out: reading, therapy, talking with Steve [her husband] and others. My conclusion, which I am now comfortable with, is that Dad was responsible, himself.” She enclosed new photos, these from the recent wedding of her son. Everyone was there, except Fred and Martha. It was, Margaret wrote, “one of the happiest times of our lives and very sweet for our family, since many of our gatherings have been sad times.” She wished me well.
I didn’t write back. What could I say? After all these years, Margaret had finally found some peace. Who was I to turn it upside down again? Sharing my own personal sense of uncertainty and guilt could only hurt her. Was Fred’s death caused by medical error, a tragic drug reaction that never should have happened? Or, did he take his life knowingly, to spare himself (and his family) from a long, sad slide into dementia? I would never know.
Still, from time to time, I wondered, fretted, hypothesized. Fred became my cold case: unsolved, new clues less likely to surface with each passing year, and yet . . .
When the Internet was born in the early 1990s, I discovered a memorial tribute to Fred published by the National Academy of Science (Engineering). There I learned about his time at MIT, General Motors, the U.S. Army Air Corps, and Ford. Fred, his eulogist had written:
. . . had fun with engineering; he built paper and balsa wood airplanes for his children and for the child he kept alive within himself. Some of these planes were propelled with carbon dioxide cartridges and were perhaps the first jet-propelled model airplanes. He built a binary counter as a toy to amuse his grandchildren. . . .
While in his seventies, Fred . . . continued his innovative work in the areas of prosthetic orthopedic bone replacements, music synthesizers, lightweight autos and computerized medical diagnoses.
This last part caught my eye, struck a chord, but at the time I didn’t know why.
Then, just a few years ago, I Googled Scott Richardson, a doctor I had known at the University of Rochester. Then at Wright State University, Scott had become an international authority on “evidence-based medicine,” the long-overdue idea that doctors’ and patients’ decisions should be grounded in valid, reliable scientific evidence. In our efforts to upgrade Chicago’s public health system, we had embraced “EBM” as a way to analyze and improve our doctors’ diagnoses and treatments, understand our mistakes, use medical technology more wisely. I wanted to invite Scott to come to Chicago as a visiting professor, teach us more about these things. I Googled Wright State to find Scott’s new address.
By whatever magic Google mixes and matches its finds, there on page one, together with the Wright State University websites, was an entry from the Dayton Daily News in 1952 whose author was one Fred Coover. When he was fifteen years old, Fred and his boyhood pals had built a plane.
Orville Wright was one of the trustees of the school we went to, and it seemed the natural thing to go ask his advice about our plans and ideas. . . . He was kind and natural with us, and talked for hours about aeronautics, the things he and Wilbur did, and the problems they ran into and how they solved them.
Fred never forgot how encouraging and accessible Wright had been, inviting him and his friends on many occasions to talk aeronautics and test their airplane models in the wind tunnel in Wright’s personal laboratory. Fred wrote:
As my family began to grow up, I wanted to ask [Wright] to come over to have Sunday night supper with us. But I was afraid to risk being changed from the boy who was always so welcome without reserve into one of those adults who might want to use him for something. . . .
One night, I drove up to a stop light and waited. Another car drove up beside me. A horn made a little tattoo, and I looked over. It was Orville Wright, and we waved and smiled. I got a thrill out of that, and felt a little remorseful, because I hadn’t been to see him for a long time, and he had been sick. “By gosh, I’m going to ask him over to Sunday night supper. . . .”
But two days later, he was dead.
It was Fred’s voice, come back to life. I wanted to hear more. And there, on Google’s magic carpet ride through cyberspace, was a link to the Smithsonian National Air and Space Museum Library, where Fred’s actual voice (and a video clip) has been preserved. There, Fred’s report describes in painstaking detail the tragic series of miscalculations and miscommunications by all involved in Amelia Earhart’s historic, doomed attempt to fly around the world in 1937. He began this way:
Before Miss Earhart took off on her Round-the-World flight she removed from her plane a modern radio compass that had been installed and replaced it with an older, lighter-weight model of much less capability. I am the engineer who had invented and developed the radio compass that was removed, and I discussed its features with Miss Earhart before the installation was made. I have reason to believe that it was the failure of her radio direction-finder to do what the more modern model could have done that caused her to be lost. The story is told herein, and it is plain to see why I have been so very much interested in the subject. . . .
Too much time has elapsed for me to remember when it was that I learned that my device was not on the Earhart plane when it was lost, or even whether it was before or after the takeoff that I learned. But I have been possessed by the desire to know what did happen, and by the wish that things had happened differently.
Just as Fred had been my cold case, Amelia Earhart had been his. For decades, Fred had doggedly pursued the cause of her death. They had grown up in similar circumstances, in the Midwest, a few years apart. Both became pioneers in aviation. Fred knew her, liked her.
Although she moved in a man’s world, and wore men’s trousers and wore a short haircut, there was nothing masculine about Miss Earhart. Every inch a lady, she was gracious and quiet-spoken, thoroughly feminine and attractive.
Fred’s account of Earhart is a story about ambition and what drives it; the weighing of harms and benefits, risk and reward; failed teamwork; the power and perils of technology; fatal errors, denied and covered up. Amelia Earhart’s loss at sea, still unexplained today, haunted Fred for almost fifty years.
As I read Fred’s report—his voice so distinctive, risen from the grave—an eerie feeling came over me. At first, I assumed it was because Fred’s voice had resurrected Martha’s voice, too, drunk with delirium in her hospital room years ago.
Fred, I told you! It’s not your fault! It’s her own damn fault! Who does she think she is, flying around in men’s pants? It’s her own damn fault!
But, no, it was something else. When I finished reading Fred’s report—sitting in my office, the magnificent Chicago skyline spread out before me—my gaze wandered to a small urn I have kept on my desk for years. It’s about the size of a beer stein, dark green in color, its mouth topped with a removable cork plug. Written across the front of the urn, in large inlaid letters, are the words “Lost Marbles.” Visitors to my office chuckled when they saw it, assuming it was a joke about the demented Cook County bureaucracy (which I, as its chief of medicine, represented). But the urn had nothing to do with Chicago politics. I had kept it all these years as a reminder of Fred.
Seeing it now, my heart leapt. Urgently, I read Fred’s report about Amelia Earhart again. It was written not long before he died, shortly before I met him. If Fred was beginning to lose his marbles when I knew him, surely I would detect signs of it here.
Even after all these years, I wanted desperately to find those inconsistent facts and unsupported allegations, the overwrought reasoning, the telltale lapses in logic. Then, at last, I would know that Fred, even before he met me, had begun his decline. I would know that Fred would have pulled that trigger anyway, digitalis or not.
But no such signs were evident. Fred’s report was brilliant, impeccable in every way—his prose style, scientific skepticism, nuanced judgments, even his wise recounting of Pacific Rim geopolitics in the years leading up to Pearl Harbor. A person with incipient dementia can’t do this. No way. Fred was getting old, but he certainly hadn’t lost any marbles. He concluded his report this way:
Whatever is finally learned about Miss Earhart’s last flight, one certainty will always remain, that it was a needless tragedy. . . .
We hope that one day records will be found or released that will reveal the truth about [Miss Earhart’s] fate. Meanwhile the memory of a brave and gracious lady remains bright after forty-five years.
In the end, Fred never found out what happened to Amelia Earhart. He never solved his cold case. But he solved mine.
His son Mark had been right all along.
After all my years of wondering, this discovery brought me more relief than anguish. Deep down, I suppose I’d always known it to be true. I had learned a lot from Fred and Martha, lessons that had made me a better doctor, teacher, researcher—maybe even a better man. Martha had trusted me, believed in me, comforted me. Milk spills sometimes no matter what you do. Knowing this had helped me long after I left her. But Fred would have seen it differently, and not just because he had lost the most. Had Fred been saved, had all our errors resulted in a “near miss” rather than a tragedy, Fred would have wanted to fix it, make the “system” safer, better for others. He would have known that you can’t perfect medical care today any more than you could guarantee safe passage of a twin-engine monoplane across the Pacific Ocean in 1937. But, if Fred had had the chance, he would have made it better.
And, in his own remarkable way, that’s exactly what Fred did.
That day in Chicago, after learning about Fred and Amelia Earhart, I wondered what had become of Mark. A Google link took me to one Mark Coover, an engineer in Ohio, but his photo showed a handsome, smiling guy much younger than the Mark I had known. This was Fred’s grandson, the son of John. This Mark is a successful inventor and entrepreneur, the holder of many U.S. patents and the CEO of a big medical device company. One of his inventions is a new technology to treat atrial fibrillation, the heart rhythm abnormality that caused Fred to be treated with digitalis so long ago. Mark’s new treatment, which has cured tens of thousands of patients around the world, uses radio waves instead of drugs. Slowly but surely, Mark’s efforts are making digitalis obsolete.
Digitalis killed Fred. Now Fred’s grandson is killing digitalis.