Growing Within Tragedy by Ira Byock
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
One of my heroes in medical school was a professor named Mary Anne Guggenheim, who was world-renowned in her field of pediatric neurology. Dr. Guggenheim had a mesmerizing way of teaching the medical facts of a case, then stepping back and adding a human dimension. After explaining a condition or neurological function, she offered a patient's perspective of what this might mean in terms of behavior, personality, or emotions. She continued to climb in my estimation during my residency, and later when I began my practice. In the course of researching patients' problems in the medical library, I was led to salient chapters and articles she had authored. Over the years she came to represent for me the importance of humility and keeping an open mind when faced with a difficult case. Though I had not spoken with her since medical school, her teaching and practice never let me forget that there are more unknowns than knowns about the human body and spirit.
A few years after I settled in Missoula, I heard that Dr. Guggenheim had retired from the University of Colorado Medical School teaching faculty and moved to Helena, Montana, just two hours east of Missoula, to establish a regional center for childhood neurology and to pursue her love of fly fishing. When hospice received a patient, an eight-year-old with a brain disease, who was being seen in consultation by Dr. Guggenheim, I felt a bittersweet excitement. Sadly, my patient was a little boy with a fatal illness, but I looked forward to working with my mentor again. She did not disappoint.
Dr. Guggenheim had first examined Michael Merseal at the request of his Missoula pediatrician, Bruce Hardy, when Michael was three, and she saw him regularly after that. Michael's brain disease was so rare that even she could not assign a name to it and had to settle for the label "degenerative polio dystrophy." Nevertheless, she knew more than anyone else about his illness, and I telephoned her with questions about what to expect from his decline. I vividly remember an early conversation about Michael's vague diagnosis. She explained that while he showed symptoms of what is called Fragile X syndrome, such as mild retardation and seizures, it was not an exact fit, and she was still mystified and would continue to hunt for a more specific diagnosis. She said, "This little boy is trying to teach us something." The refrain stuck in my mind and echoed louder and louder as Michael's illness progressed.
Michael Merseal did, indeed, teach me and everyone around him many things. As a child robbed of intellect and language by his disease, Michael was an innocent, seemingly incapable of intention or design. Nevertheless, in his dependence and dying, he became a fountain of lessons.
Michael's appearance was deceiving. A cheerful, apparently happy child throughout his young life, he was enormously engaging. He captivated people with his big smile and two flashing front teeth, and when they looked into his large, brown eyes, they were moved. For some, he revealed the power of human connection. For others, he was a mirror, reflecting their own soul.
At Michael's funeral, Andi Dreiling described this special quality: "He opened people's minds to possibilities. Those who came to him, supposedly a damaged child with no capacity for consciousness, found themselves first asking `Who am I?' and shortly wondering `Who should I be?' He brought together people who were far apart. People around him changed their attitudes, their philosophies, and even their lives. Caring for this totally dependent child became first satisfaction and then joy, a privilege, and finally, a sacred honor"
Michael's dying formed a crucible in which people were purified and forever altered. As he lay dying, his family was transformed from a collection of related people to a process. Family became a verb, an action or a quality coming into sharper focus. And those of us on the periphery of the family circle contributed to transforming "community" into a coordinated process of committed caring.
One of the early lessons of Michael's dying had to do with the nature of tragedy. At first glance, his dying appeared to be a horrible tragedy: A little boy with no childhood or future was suffering and dying from something totally beyond anyone's control. But his own and his family's suffering and devastation shrank compared with the joy and growth he engendered. While Michael's illness and dying were tragic, they were not only tragic. What we experienced was far greater and far richer than sorrow alone.
Michael began showing the first signs of misfortune at age three. His head was abnormally small, he was having seizures, and he was not developing normal toddler skills. His CT brain scan, which was not quite normal, pointed to a degenerative and potentially progressive central nervous system disease. Suspecting a congenital, genetic condition, Dr. Hardy sent Michael to see Mary Anne Guggenheim. Her initial diagnosis was the poignantly named Fragile X syndrome, and she detailed for Mike, the boy's father, what he could expect to see in his son. Yet from the beginning, Michael did not follow any predictable patterns. Despite the forecast, he slowly learned to walk, speak a few words, and use the toilet. But at around age five he stopped growing, and within two years had regressed into infancy, unable to feed himself or move around without help. For the rest of his life he would be a cheerful, babbling, bedridden baby with the mental age of a ten-month-old.
A single parent, Mike Merseal was raising Michael and his older sister, Krystle, by himself. Their mother had led a troubled life, and she and Mike had separated when the kids were four and five years old, so Mike provided both the mothering and the fathering. Parenting came naturally to him. He instinctively knew when to discipline and when to listen, when to expect childishness and when to demand maturity. Michael and Krystle looked like siblings. Both had dark red hair, freckles across their noses, and fair, pink complexions. Michael's frequent smile radiated from two large buck teeth. Krystle's face usually bore the expression of a sunny nine-year-old, but at other times she exhibited the solemnity and wisdom of a grandmother.
The Merseals lived in a yellow frame house on the north side of Missoula with a dog named Ginger and a large black-and-white cat named Pooh that Krystle adored. Her attic bedroom was plastered with posters of cats and kittens. Before little Michael had become bedridden, Mike and the kids loved to pile into his pickup and drive to Seeley Lake for picnics and fishing. When Michael's seizures, which often involved incontinence followed by long "post-ictal" periods of being dazed and confused, with episodes of gagging, kept them close to home, the family still enjoyed times together. Mike taught Krystle how to cook their favorite desert, Buffalo Chip cookies, made with chocolate chips, marshmallows, and oatmeal. Together Mike and Krystle liked to read Dr. Seuss to Michael and sing to him. Michael loved music, and the household was never quiet. From rock-and-roll oldies to contemporary country tunes, the radio or record player was always going. During the day, a nurse paid for through a state fund cared for Michael while Mike worked as a custodian at the University of Montana. When Mike and Krystle got home in the late afternoon, she helped her dad prepare the liquid supplement for Michael's tube feedings and played with her brother. She rattled his toys, and he gurgled and reflexively grinned, giggled, and chewed on anything within reach.
I met the Merseals when Michael was eight and his health was rapidly deteriorating. He had just been hospitalized because of persistent vomiting, and the doctors at St. Patrick's had recommended surgically inserting a tracheostomy tube into his neck to prevent choking. When Mike refused to approve the surgery, declaring that his son had already been through too many procedures, the family was referred to hospice. Mike had long known that his son's illness was terminal, and possessed equal measures of fatalism and practicality. When he heard from Dr. Guggenheim that Michael had only months to live, he grimly accepted this turn of fate and concentrated on ensuring his son's comfort and contentment, no matter how short-lived they might be.
When hospice became involved, Michael's seizures were occurring back to back, and his vomiting and choking were becoming almost hourly events. His son's suffering tormented Mike. Even moistening Michael's lips and mouth provoked a reflexive gag, and tears welled up in his eyes before he stiffened dramatically and finally went limp. Although little Michael could not speak to express his pain, Mike read the signs in his son's frantic eyes during his seizures and choking and in his listless body afterward. After he was discharged from the hospital, Michael was put on a number of medications to control his seizures, and his father cut back on his tube feedings and fluids in order to diminish the horrible gagging. But neither measure worked. Dr. Hardy had kept in touch with Dr. Guggenheim by phone, and now, in the final phase of his patient's illness, he asked me to help.
When I called to set up an appointment, Mike said that he had been expecting my call and asked me to the house to talk about further reducing or stopping tube feedings and fluids. It was early afternoon; I sat with the family--Mike, his sister, Kathy, and their father, Ted--around the kitchen table. Krystle was in school. James Taylor was singing on the radio. The kitchen was tucked into an alcove off the living room, where Michael slept on the couch. As we talked, we could hear his rattling breaths. At one point, we had to interrupt our discussion to suction phlegm from Michael's windpipe. I noticed that Mike performed the task adeptly.
Ted Merseal apparently was a recent addition to the household. Before Michael's hospitalization, Mike and his father had not spoken for ten years. When Michael was hospitalized, Kathy had telephoned their father and told him what was happening to his grandson. He had come to the hospital within an hour. Since Michael had been discharged, Ted had shown up at the house daily. Although he looked like a working farmer, always dressed in denim overalls, flannel shirt, and a cap with a feed company logo, he was mostly retired, and he readily volunteered to run errands or sit with Michael. He usually stayed in the kitchen and made sure there was always hot, fresh coffee. Ted and Mike mostly spoke to each other in clipped though not unfriendly tones. They exchanged practical words about things like meals, the day's shopping list, or a new problem with one of the cars. Whatever had caused their estrangement had been buried and replaced by Ted's support of the hard decisions Mike was having to make, and Mike's appreciation of that support and his father's presence.
Mike and Kathy bore little resemblance to one another. Mike was short and stocky, with straight blond hair long enough for a ponytail, and although Kathy was also broad in the shoulders, she was taller, with short, coffee-brown hair. Nevertheless, they interacted like twins, sharing unspoken thoughts and emotions. They often mirrored each other in their reactions to situations or people. Michael's illness had brought them even closer, if that was possible. Kathy had moved in after Michael's first hospitalization, and she and Mike juggled their jobs and caring for Michael in a carefully choreographed duet.
As our visit began, we chatted about who had visited Michael, breaking the ice by gossiping about a new pizza place in town before the conversation shifted to Michael's condition. As we got down to business, the mood was glum. Michael's seizures were not abating despite a barrage of anticonvulsant medications, and his choking was worse despite the reduction of tube feedings. Mike was sleeping only a few hours each night, often getting up to check on Michael's breathing. The worst time was the early morning when he came into the living room. If Michael was feeling well, he was awake and chirpy, but in the past few weeks, Mike had always found him silent and listless.
In the middle of the table, Mike had assembled all of his son's medications. He ticked off the names without mispronouncing a syllable: Reglan, Tegretol, Felbamate, Depakote, plus a multivitamin. "It seems to me that the medications are making him throw up, not the other way around," Mike said. "He had twelve seizures yesterday, and they're getting worse, putting him out longer and longer."
"How much Jevity are you giving him?" I asked about the liquid nutrient he was getting through his tube.
"Only a can a day, and about four hundred cc's of electrolyte solution," Mike responded. As he mashed one cigarette he lit another, and cradled his coffee cup.
"Does propping him up help at all?"
"Not really," he answered, and waited.
"It is hard to say what Michael is able to sense or experience," I began. "Certainly, his seizures trigger a physiological response. His body stiffens, and there are tears in his eyes. But beyond that ..." My voice trailed off. Everyone was gazing into a coffee mug, heads bowed. "As you know, cutting back further, or stopping his tube feeding and fluids, is an option. I want you to know what all the possibilities are, Mike, and I will tell you everything I know. The decision will remain yours. You're driving the bus here." We had a lot to discuss, but I paused before continuing.
"Clearly, Michael will die of some complication from his neurological deterioration. It may be an infection or the result of a prolonged seizure that causes hypoxia, that is, robs the oxygen from his brain. Cutting back on calories and fluid may be an option worth considering."
"You mean starve him to death?" Kathy whispered, her eyes wide.
I explained that the reality did not match the gruesome image the word starvation brings to mind. Kathy, like most people, harbored understandable misconceptions about this way of dying. People imagine that malnutrition and dehydration are painful, horrible ways of dying. But with an advanced illness like cancer, heart, or lung disease, kidney failure, or AIDS, the reality does not match the awful image. Over the years I have seen that malnourishment and dehydration do not increase a terminally ill person's suffering, and can actually contribute to a comfortable passage from life.
"Kathy, I would never suggest that we refuse Michael his baby bottle or food if he could take it, but now even his bottle causes him to gag uncontrollably. The tube feedings are also causing him to choke, and we've tried all the things that should be making it better. It's unlikely that Michael will feel much discomfort or suffer if you decide to cut back on his feedings further. Hunger disappears after a day or two of withholding calories, and dehydration in someone terminally ill is usually experienced as a dry mouth and throat, which we can easily relieve with tiny sips or a spray of fluid. Although there's no way of knowing exactly what Michael is feeling, my experience with other patients has been that this is a comfortable way to die. Often people even experience mild euphoria, probably because of the change in their chemistry from not taking in calories."
For years hospice people have avoided this subject, fearing that it might be misinterpreted as encouraging suicide. But it is not suicide to refuse an operation when one can no longer swallow, nor is it suicide to decline food when hunger is a distant memory and death is one's immediate future. The social climate is rapidly changing, and one good effect of the assisted suicide movement has been to make discussion of suicidal feelings and not eating more common. The family of a person who can no longer eat normally or communicate his desires often struggles with decisions about life- prolonging procedures such as surgery to place a tube for formula feeding. In deciding that a loved one will not be allowed to die of malnourishment, a family is making a tacit decision to let the person die of something else. Thus, the declaration by the daughter of an eighty-seven-year-old comatose patient, "I would never let Mom die of starvation," is a decision that Mom must, therefore, succumb to infection or stroke or seizure or blood clot or gastrointestinal hemorrhage. Each complication that is treated merely shifts the physiology of the person's dying, it does not halt it. A patient who is artificially fed and hydrated may live longer but is more likely to die with episodes of acute pain or breathlessness or, as in Michael's case, from a seizure. For Mike, the issue was not about how, precisely, his son would die but the quality of his life in the final days--that is, how much physical distress he would feel.
"You have done a magnificent job taking care of Michael," I told Mike. "You've given him more love and attention in his few years than most people get in their whole life. And I recognize how tough it must be, trying to take care of him and at the same time making sure Krystle does not feel neglected. But somehow, you've managed. I know of no institution or medical people who could have done it as well as you have. You have earned my lasting respect. Whatever you decide, you should feel confident that you have done everything for this little guy. I don't think there are any wrong decisions to be made here."
Mike's eyes watered. "He's not holding down any of his food. I can tell it's really hurting him when he throws up," he said. As if on cue, Ted rose from the table to check on Michael's breathing while Mike briefly diverted himself by pulling a Mountain Dew from the refrigerator.
"You don't have to decide anything this moment," I said. "This is wrenching stuff, so take as much time as you need. None of us, in the months to come, and especially after Michael has died, wants to look back and wonder whether we did the right thing. Think about it. We don't need to make any changes today. One thing I would like to do right away, Mike, is to begin to back off on his usual seizure medications and start him on a low dose of Versed around the clock."
I explained that Versed was a fast-acting, powerful medication like Valium that would have to be given by subcutaneous or intravenous infusion but would very likely control Michael's seizures. This was another big topic we needed to talk about today, and I was glad that Andi had discussed it with him when they were preparing for Michael's discharge from the hospital. She had introduced Mike to Versed and the other drugs included in the hospice "crisis pack." The medications and syringes, and the idea that he would eventually learn to use them, had intimidated him. "Am I supposed to use these needles?" he had asked her, his mouth open and brow arched. The person she had described then was different from the resolute man sitting across from me now.
"The Versed will give him relief from the seizures. But he'll probably be pretty sedated. We'll start at a fairly low dose and adjust it to keep him from convulsing. You need to know, however, that if a large dose is required, there's always a chance that it could suppress his breathing and he will die. It's not likely, but there's a chance," I said.
"I understand. Andi and I talked about this for a long time. Whatever it takes, we've got to stop his seizures. I'd like a day or two to think about the tube feedings and fluids. Maybe tonight we can put him on Gatorade and water. You know, gradually cut back to see how he does," Mike said. "I've just got a feeling that he might snap out of this. I don't know why, just a feeling."
Mike would not be human or a father if he did not hold a kernel of hope. I knew he was looking for middle ground between this sliver of wishful thinking and the desire to end his son's suffering. And, as happened time and again with this family, little Michael showed the way.
Before I left the Merseals that first day, I told Mike that I would talk with Dr. Hardy and get in touch with Dr. Guggenheim as well for any new thoughts she might have on controlling the seizures, and any other suggestions. In truth, I did not expect to hear anything new, but I wanted to give Mike as much time as he needed to decide which way to go next. As important as Michael's medical care was, my treatments as a doctor--and those of the other hospice people--had become secondary to the family's emotional needs. In this respect, hospice care differs noticeably from the modern medical approach to dying. Typically, as a hospice patient nears death, the medical details become almost automatic and attention focuses on the personal nature of this final transition, what the patient and family ire going through emotionally and spiritually. In the more established system, even as people die, medical procedures remain the first priority. With hospice they move to the background as the personal comes to the fore.
Audi gave me daily reports about the effects of the Versed; it was slowing the tempo of the seizures. Michael slept most of the time but occasionally shifted to groggy wakefulness. Finally, the gagging stopped. Mike spoke about the various treatment issues with Kathy and Ted, and debated the pros and cons aloud with himself and with the hospice chaplain, Tom King, who had become a trusted friend. A couple of days after our talk, he asked Andi to lower Michael's fluid intake to three cans of Jevity and five ounces of water a day. Three days later, they cut it to one-and-a-half cans, and after another three days Mike decided to stop the nutritional supplement completely.
Less than a week after the decision was made, I was finishing dinner at the Hob Nob Cafe in the old Union Hall downtown when I received a page from the Merseal home. Joy, the hospice nurse on call, needed to speak with me. "Michael's making these strange noises," she reported. "I don't know what I'm listening to. I think you should come over."
"Is he in distress?"
"I don't think so," Joy said.
"Has he been seizing?"
"Mike says Michael hasn't had a seizure in three days."
"I'll be over in a few minutes."
Every light in the Merseal home was on. The family, along with Joy, a friend of Kathy's, were clustered around Michael's couch. He slept here for two reasons, one practical and one symbolic. The couch offered more space for the stuffed animals, pillows, and dog that crowded it, and the living room gave everybody easy access to the medical tubes and machines Michael needed. Symbolically, this was the center of the home and the family, and it had become Michael's place. Installed in the living room, beneath a blue quilt on the wall pinned with pictures of Barney and a rocking horse, he was the first thing people saw when they visited. Here, everyone who entered was reminded that this boy was the polestar of the family.
Mike greeted me at the door; for a few moments I stood there, watching Michael and his sister. Krystle, pigtailed and in her pajamas, was snuggling beside her little brother and making silly noises, mimicking his own. She whistled and popped and screeched to him, and Michael watched, his eyes wide open. I was stunned; he was watching her.
Mike gave me a quizzical look, and Joy shook her head in mystification. I knelt beside Michael and tested his eyes. Sure enough, they were tracking, something he hadn't done in months. My mind raced as I listened to his chest and heart. Finally, it struck me; I stood up and declared, "I think he's cooing!"
Krystle was shaking a rattle for Michael; his eyes got wider, and he kept reaching out to grab it. "He wants to chew!" she said excitedly.
I had never seen anything like this before. This little boy was supposed to be in a coma and dying. He had not had any nourishment to speak of for days, only a few ounces of water a day, and was now on no anti-seizure medications other than the Versed, which was supposed to sedate him. But "supposed to's" aside, here he was, awake and ready to play.
"He hasn't had a seizure since the day before yesterday," Mike volunteered.
"My best guess is that until we started the Versed the seizures had been coming so frequently that he's been in that post-ictal, sort-of-irritable, `gorked' state almost continuously for weeks. It was like hibernation. And now that he seems to have stopped seizing, he's woken up." I shook my head with amazement and grinned at Mike. "The good news is that I think, for the moment at least, your son's doing great! The bad news is, I also think he's rested, and you're going to be up for awhile!" Mike gave me a lopsided smile.
The improvement was dramatic. With Michael temporarily resurrected, we all changed gears. He was offered his baby bottle and drank without any choking or gagging. We steadily increased his fluids and formula. Mike now discovered that his son, like a growing infant who has outgrown the bottle, was hungry for solid food. The family resumed its picnics, now in the backyard, with Michael wearing a brightly colored baseball cap in his wheelchair and Krystle climbing a tree or chasing Pooh. Michael was very thin and his father was anxious for him to regain his strength. He spoon-fed him macaroni salad, ham, cereal, marshmallows--virtually anything in the pantry. The day his son punched him, he was delighted. "He had finished eating, and I asked him how he was doing, and he doubled up his fist and hit me in the mouth! He didn't mean it, but I'd never seen him do that before. I grabbed some toilet paper for my bloody mouth, and started laughing, because he was getting his strength back," Mike recalls.
The Merseal household came alive with visitors, people who were eager to see Michael when they heard about his astonishing comeback. Mike was having to juggle all the people who wanted to sit with and care for his son. A nurses' aide who had been assigned to another patient asked if she could come by on weekends. Michael's teenage cousin brought tapes of his favorite music. Preschool teachers from years past visited with coloring books and toys. Even Krystle's friends hung around after school just for the chance to giggle and play with her brother. Soon after Mike rose every morning, someone would appear at the door to see Michael, and the traffic continued through the day and into the evening. Michael's night-owl hours kept the lights on, coffee brewing, and company coming until well after midnight.
Mike felt more than one reason to welcome all the visitors. Michael loved the company--the noise, the voices, the activity--and frequently squealed with delight. A lively house also enabled Mike to avoid stewing about his son. "If there wasn't anybody in the house, I would sit there and think about Michael and what was going to happen. Anybody could walk through my door and I'd be happy to see them. Anybody except Michael and Krystle's mother," he said.
Through July, August, and into September, Michael flourished. He was doing so well that Mike resumed working at the university, from which he had taken unpaid leave months before. I marveled at Michael every time I visited. Except for his size, he was like a happy six-month-old child. He defied medical axioms. Although an MRI showed deterioration of cerebral tissue, with the current dose of Versed, his brain looked relatively calm on an EEG. I told Mike that his son might be on a long-term plateau.
As we both knew, this was not entirely good news. The uncertainty of Michael's present condition and the certainty of his demise in the uncharted future pushed Mike and Krystle into an emotional roller coaster. Mike had no illusions about his son's prognosis. He read a copy of a letter Dr. Guggenheim had written about Michael to his pediatrician and myself so many times that he memorized phrases, especially the last paragraph: "I am sure that we all appreciate how complex this is for Michael's father and other family members when we had anticipated that Michael was in the last few weeks of life. Now, we have to reassess and recognize that part of his terminal state was apparently caused by the anti-epileptic medications and at this point, I cannot accurately judge his actual life expectancy."
Mike reiterated his plan not to do anything dramatic if Michael suddenly became ill again, relinquishing any wistful ideas of a complete reversal and lasting good health. Nevertheless, every time he saw Michael laugh or grab a toy, he hoped it was forever.
Krystle's roller coaster traveled higher peaks and deeper lows. Some days she was inseparable from her little brother. She would curl up beside him on the couch and whisper into his ear or prop him up, and with her arm guiding his, fill in a coloring book, repeatedly removing the crayon from his mouth and chattering sweetly to him. Occasionally he drooled on her, and she nonchalantly wiped it off. Yet on other days she declared that she did not want to play with him or she ignored him. Out of self-protection, part of Krystle was withdrawing from her dying brother.
For me, Michael's fluctuations in health were a repeated lesson in humility and the potential arrogance of supposed knowledge. I could not make any assumptions about how this little boy would fare from day to day, or even week to week. Instead of imposing on the situation what I already knew about his medical condition and prognosis, I had to admit to the myriad unknowns and stay open to the next lesson. I felt like a surfer catching huge waves and trying to stay upright in a rolling sea. With each successive wave, I wondered what Michael would teach me next.
Michael remained stable through the fall, and we began to wonder if we should transfer his care from hospice to the less intensive services of home health. All of us on Michael's hospice team agonized over the thought of withdrawing from this family we had grown to love. But the plateau did not last beyond Thanksgiving. Michael's seizures gradually returned, stealing a couple days of sentient life each time. After the initial shock of a seizure, he became irritable and lethargic and vomited frequently. His fluttering eyelids would signal a coming seizure, and his father would hold his son and rub his head as his body stiffened and shook like a marionette with a cruel master. "Hang in there, Tiger," he soothed. "We'll get through this one, we've been through worse. Hang in there."
While the electrical storms in Michael's brain grew worse, the love around him grew stronger. People who had known him through the Medicaid office or his preschool formed a constant stream of visitors. Virtual strangers to Mike would drop by the house, introduce themselves and their connection to Michael, and ask if they could sit with him for a few hours. As I witnessed this parade of pilgrims, I marveled at how Michael's dying belied medical wisdom. His chart and medical history--the description of a boy with a hopeless illness whose life was a litany of misery and debilitation--looked like only tragedy. Yet when I removed the medical filters from my eyes, I was struck by how powerfully his life was affecting his family and friends and by the loving relationships he inspired.
Around the middle of December, Mike realized that his son was slipping away for the last time. The light in his eyes dulled. Mike told his son to hang on and make it through Christmas for his sister's sake. Mike took Krystle out of school a week early and they decorated the house with colored lights, red ribbons, and pine boughs.
I stopped by the house to check Michael and take his vital signs. Mike paced and chain-smoked as I sat on the edge of the couch.
"Are you getting out at all?" I asked.
"Not much. It makes me nervous to go anywhere." He lit another Newport and looked straight at me. "In the last twenty-four hours, he's had three of the hard seizures and at least twenty of the fluttering ones, Ira. They have to stop, he can't take it anymore. I can't watch it anymore. They're getting worse and longer."
Krystle was puttering around the kitchen as we spoke, and I watched her scoop out a mound of chocolate ice cream for lunch. She fiddled with the radio and found a station playing Christmas carols.
"I understand, Mike. We can increase the Versed infusion further and give a bolus injection each time you see a sequence of the milder seizures that tell us he is beginning to kindle. That way, maybe we can stop the grand mal seizures from happening." I smoothed Michael's brow and saw that someone had pinned a sticker that read "Don't Ever Give Up" on the quilt over tile couch.
“You understand that full sedation may be necessary to control the seizures." This step meant crossing another major threshold and giving him intravenous barbiturates, something we have very rarely had to do. But I did not have to tell Mike this. By now, he was achingly familiar with the signs of suffering and the potential consequences of treatment.
"Yup, I know. But they have to stop, even if he's in a coma," he insisted. "The look in his eyes last night, the pain and stuff. He can't take it anymore, even if it again means stopping the feedings and fluid. They're not making him feel any better, and they're just prolonging the agony." I nodded as he traversed this sad, familiar ground. I said that for the moment we would adjust the Versed dose and start liquid phenobarbital through his peg tube. The front door opened and Ted and Andi came in, having driven up simultaneously. Andi was starting her shift, and Ted carried a bag of groceries. Ted gave a soft hello; Andi sat down beside me. She took Michael's hand, noting his pulse and skin tone.
"You saw we're up to two milligrams an hour?" she asked me, referring to the Versed.
"Yeah. Mike and I are talking about holding off on the tube feedings and cutting back on the fluid."
No one said anything for a few minutes. Krystle came over to the couch and sat on the end. Ginger hopped up beside her. She held a music box that played "When You Wish upon a Star."
Ted was in the kitchen, and I smelled coffee. The house seemed enveloped in a blanket of calm. I packed my medical bag and prepared to leave. I reassured Mike that we were doing everything humanly possible to make his son comfortable. Once again, I said I thought he was acting carefully and out of love in reducing Michael's tube feedings. But I had a further concern.
"Mike, even though I feel you are doing the right thing, and I think I would make the same choices if Michael were my son, I want to present this case to the ethics committee at St. Pat's. Because Michael is a child, and because his treatment plan goes beyond ordinary measures, I want to make absolutely certain we leave no stone unturned. I want to do this in the light of day, so to speak. If someone criticizes your decision, or our care, after Michael passes away, it will be important to all of us to be able to say we asked everyone we could think of for help and made these decisions in the open. OK with you?”
Mike's response was immediate and unequivocal. "Sure, I've got nothing to hide."
As a doctor treating a terminally ill child, I felt it was important that our actions be known and understood within the medical community. Michael's story was receiving some public attention. The Missoulian was planning to run a front-page account about him, and a film crew from Maysles Films, a production company for Home Box Office, was capturing his story for a documentary about hospice. The spotlight on a child who was dying and whose family and doctor have decided to cut back on nutrition made all of us sensitive to appearances.
I had already discussed my decision to solicit input from the ethics committee with the hospice team. No one had any doubts about the rightness of Mike's decision, and I took some heat for my insistence that the ethics committee discuss the case. A few members of the team feared that the committee's questions would intrude on this family and might result in a second-guessing of their decision. I held firm. Three or six months after Michael died, I did not want anyone, his family or us, accused of killing him. Any inconvenience or intrusion on the Merseals now would pale in comparison to the sort of inquiry and fuss they might be vulnerable to later. I felt it was imperative to anticipate, prepare for, and prevent such a possibility. Without violating the bounds of medical confidentiality, we had to make people understand the situation. It was paramount that, if anyone in the medical community--or the community at large--investigated, they understand that we were not euthanizing this little boy but remaining focused on his comfort and the support of his family. At times in hospice care the line between ensuring comfort and hastening death becomes fine; in Michael's case, I felt it was best to walk that line in bright light.
In my letter to the chairman of the ethics committee, I explained: "This case is not controversial in the usual sense. There is no conflict with the family. Indeed, relationships with the family are warm and supportive. However, all involved realize the poignancy of the situation. While this decision seems within the ethical and legal authority of this patient's father to refuse unwanted medical intervention, we are aware that the situation might appear to an outside observer as constituting euthanasia."
I was braced for a lengthy and arduous session with the committee. Instead the meeting lasted just over an hour. The two doctors, the nurse, the social worker, the nonmedical business person, the hospital administrator, and the community pastor who comprise the committee had all read my letter and a summary of the medical aspects of the case. They asked pertinent questions and probed to find out whether all available options had been explored. They did not question the family's motive or decision but marveled over the exceptional care of Michael. At the conclusion of the meeting, the committee asked me to communicate to Michael's family and the hospice team its understanding, continued interest, and support.
Less than a week later, the Missoulian's front-page story, "Michael's Gift: Dying Child Leaves Family Stronger Still," described what was happening in the Merseal household. It quoted Audi: "Michael has taught a lot of people, hospice workers included, not what dying is but what living means. This is not a sad house. This is a remarkable place." The story had unexpected consequences. Michael's mother, Leslie, read it, called Mike, and asked to see her son.
Four years earlier, Leslie had left behind an angry husband, a frightened daughter, and an uncomprehending son. Even after years of peace without her, Mike's anger still burned, and Krystle was still terrified that she might be forced to live with her mother. Krystle happened to answer the phone when Leslie called, and in a few short minutes, Krystle was terribly upset. Mike refused to let Leslie come to the house.
Michael lived through Christmas, still very much a part of the family, though he was sedated most of the time. Santa Claus gave him a big brown stuffed bear and a Lion King T-shirt, and gave Krystle a new pair of skates, a cookbook for kids, and a stuffed kitten. On Christmas afternoon, a day gray and drizzling outside but lit inside with candles and colored lights, Michael opened his eyes for the last time. Mike was immediately by his side with a cool washcloth for his sweaty brow. His eyes briefly tracked, picking up a Snoopy doll Mike wagged for him.
When Andi and Tom King came by later that afternoon, Mike and Krystle were baking Christmas cookies. But Mike was clearly on edge.
"This is scaring me real bad," he said, after describing Michael's condition. "I don't think he'll last another week. I can't let him go on anymore, he's gone through too much. I've got to let him go. I've been thinking about it for days. This is making me nervous, it's got my whole body shaking. I can’t sleep.”
Two days later Mike left a note on Leslie's windshield saying that she could visit her son the following evening. When he told Krystle that her mother was coming over, the little girl insisted on going to her grandfather's house. Leslie appeared around eight o'clock--petite, with long brown hair, delicate, fine features, and a doll-like beauty. Mike let her in with a cold hello and retreated into the kitchen area. He had asked Andi, Tom, and Kathy to be there. Mike and his sister stood in the kitchen, leaning against the sink, and mostly avoided looking at Leslie as she sat beside her sedated son and rubbed his back.
"Michael's in a sleep-like state," Andi explained. "He was having terrible seizures, and this was the only way to make him comfortable. But I always act as if it's possible he knows I'm here and can hear me," she suggested. "We keep his mouth moist, so he won't be thirsty." She showed Leslie a sponge swab. "He's also getting a little fluid through the tube."
Crying as she spoke, Leslie remarked on how much Michael had grown and pulled back the blanket to caress his legs and feet. Although Michael had been bedridden for months, his many caregivers had made sure that he had no sores or raw spots. The only physical sign of his failing health was a bluish tinge at the ends of his limbs and other extremities. Leslie noticed that the tips of his ears looked blue, and Andi explained that it was due to lack of oxygen. With tears silently running down her checks, Leslie studied Michael's hand, which looked waxy, kissed it, and began to wail.
"I wanted to read him a story," she said helplessly.
Tom King knelt beside the couch and wordlessly held Leslie's hand.
"It'll be OK, I believe that with all my heart," Andi said, and left to get fresh syringes from her car. The house was crammed with people, but the loudest sound was the gurgling of Michael's breathing. When Andi returned, Mike stepped forward to help her. Adept with tubes and needles, he helped her give Michael his nine-o'clock dose of liquid phenobarbital through the tube. Leslie watched as Mike then gently slipped a soft plastic suction tube into Michael's mouth and throat to clear the collected saliva. As Mike suctioned him, he intoned, "It's OK, Tiger. You'll be OK, Tiger."
When Mike finished, Leslie marveled, as if she had not known what her ex-husband was capable of.
Over the next two hours, Mike, Andi, Leslie, and Tom hovered over Michael, tending to his every twitch, his every irregular breath. Concerned about a seizure breaking through the sedation, Andi checked and rechecked the subcutaneous Versed infusion line. Mike changed the Foley catheter bag, even though it contained barely a cup of urine. Together, they cleared his mouth and throat. Throughout it all, Michael's mother grew visibly hollow-eyed and pale.
When they could do no more, Audi said to Mike, "He's not suffering. He's in a different place."
"Do you think he's going?" Mike asked.
"Yes," Andi replied softly. "I'm not sure tonight, but it feels like it."
The need for suctioning became more frequent, and Mike worked the tube while Andi held Michael's head from behind at a slight tilt. Frightened by the long plastic tube that disappeared into her son's nose, Leslie stood back and watched. But as time went on, she edged closer and closer.
Mike, Andi, and Leslie hovered over the comatose boy. His hands and face were turning grayish blue. And] softly murmured, "It's all right, sweet boy." Mike sat on the edge of the couch close to his son's head and held his hand. On the other side, Leslie leaned close to her son's face, almost lying down beside him. The room jangled with discordant sounds: light rock on the radio, Michael's talking bear reciting a story, and the slurping and rattling of the suctioning tube.
Through his tears, Mike urged, "Let go, Michael. You're beautiful." Leslie was beyond words; she wrapped her arm around Michael and wailed. "The two hospice workers moved closer and enveloped the grieving parents in their arms.
Sensing that Michael's heart had finally stopped, Andi consoled them. "He did more than fight the good fight," she said.
Bereft, yet composed, Mike agreed. "Yeah, he needed to rest."
I was not there when Michael died, but I had been visiting almost daily. As Michael was dying, the Merseal household felt like a sacred place, almost a temple, where people selflessly poured their love into a little boy. The family dynamics--Mike's enormous growth as a father, Krystle's uncanny ability to be both child and mature sibling, Ted's and Kathy's coalescing into a tight unit-- evolved by the day and changed what some might have considered a dysfunctional, disparate family into a committed whole. This family grew immensely in the face of this seemingly senseless tragedy. Even as a vital part of it was being amputated, long-festering wounds and previously severed relationships were healed, and the family assumed a new and stronger identity. Clearly, this was neither a painless nor perfect process. People and families all have their flaws; certainly the Merseals were no exception. Mike never reconciled with or forgave his ex-wife for leaving. Nevertheless, for the sake of his son, he put aside his burning resentment of her. When Krystle returned home after Michael had died and Leslie had gone, her first thought was that her mother had taken her brother. She was relieved to learn that he had peacefully died. Although Krystle could not forgive or forget that her mother had left them, she recognized this special time in her family's life and suppressed her nine-year-old emotions. Leslie, too, transcended ancient emotions, at least for a few hours. Despite being surrounded by rejection, she did not flee or back away. It was too important to stay with her son.
Many people believe that the dying of someone who is unconscious has little value and that it stresses family members and caregivers far beyond the usual sadness it brings. What is the point, they wonder, of allowing an unconscious, terminally ill patient to linger? The patient is mentally gone, and the family is suffering from emotional and financial demands. Isn't this the kind of situation that cries out for euthanasia? Michael's story certainly attests to the value such a dying can hold for a family. As Mike cared for his comatose son on Christmas Eve, I remember someone saying to him, "You must wish it was over." He replied, "Oh, no, I still have hope, I still have my family." Mike would not have wanted Michael's death to have come any sooner than it was destined to. Up until his final breath, Michael united and fortified the family. [173-192]