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Suffering and Sadness in Dying Well
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
Suffering commonly goes hand in hand with an incurable illness as people struggle with discomfort, disability, and their inevitable demise. They may suffer from the physical pain of their disease, and they may suffer as well from the emotional and psychological pain that comes with losing all they have been and all they have imagined they will be. While these two kinds of suffering are almost universal among the dying, they are not untouchable. Suffering persists when a person's physical pain is ignored or declared uncontrollable or when a person's emotional pain is not understood or is dismissed as inevitable. In my experience the personal, internal suffering can be far more intense and require even more skillful intervention.
Ironically, the pain most people associate with dying, the physical hurt of a terminal illness, can usually be straightforwardly contained. What my profession drily calls "symptom management" involves not only a pharmacopeia of medications (palliative care has advanced far beyond the old morphine-based Brompton cocktail), but also a collection of aggressive symptom-relieving techniques. Within the hospice pharmacopeia, a large array of medications(from glucocorticoids to anticonvulsants, antidepressants, and even pyschostimulants) are remarkably useful when applied to specific pain syndromes. Modern medical technology and advanced pharmaceuticals have given doctors the ability to reliably ease the physical discomfort of terminal illness.
The fact that many doctors and medical centers do not treat pain aggressively does not mean that physical pain is uncontrollable. Physical pain among the terminally ill exists because doctors lack the will, not the way. Deterred by opioid phobia or ambivalence about medications, doctors, patients, and families may step back from the firm commitment that is needed for assertive pain management. The current state of medical education, which does not train its practitioners to adequately evaluate or aggressively treat pain, further hampers such efforts. In the minds of too many people today, the answer to unbearable pain among the dying has become assisted suicide or euthanasia, as if effective pain treatment did not exist. Physical pain must be understood in its proper perspective, that is, as a single, readily manageable component of suffering. With strong resolve from patient and doctor, relief of physical suffering is always possible.
I have found that suffering from personal, mental pain is a much more complex and thornier problem. The mental anguish of impending personal annihilation and the emotional despair of losing all that one has, and one is, can be far more intractable. Personal suffering hinges on what gives a person purpose or meaning, or what Dr. Eric Cassell, author of The Nature of Suffering and the Goals of Medicine, calls "personhood." By personhood he means dimensions of the self that extend beyond the body and encompass personality traits such as temperament, distinctive characteristics, and personal habits. They include a person's cultural background, life as a social being, and relationships with others. A person's past and future, as well as beliefs, moral values, and unconscious or interior life, are a critical part of personhood. Possessing a future--not only hopes and dreams but also immediate plans and expectations--is also vital to feeling whole. People act out the essence of their personhood every day in the routine activities that give daily living shape and texture. When terminal illness alters or amputates these activities, one's sense of self and personhood are under assault, and suffering follows. For someone who is dying, this problem is often the crux of personal suffering. When one is debilitated by illness and frequently confined to bed, one's very sense of who am is in jeopardy.
Douglas Kearney was a forty-six-year-old father of three who developed lung cancer. By the time it had begun causing symptoms; the disease had spread to his brain and was progressing rapidly within his chest. With the support of his wife, Barbara, he sought out the most aggressive surgeries and treatments, and for more than a year waged war against this dreadful foe. Suffering was daily fare for Douglas during much of this time, and his physical pain was frequently immense. Yet Douglas's distress extended far beyond what was happening to his body.
The particular suffering that Douglas experienced gnawed at his emotional well-being and personal identity; it affected his relationship with himself and with others. Douglas stubbornly refused to face the sadness caused by losses within his dying, and he ultimately reached the deepest depths of personal despair. In denying the enormity of the sadness around him, he distanced himself from his family and was unable to grieve with his shattered wife and children. Instead he became angry at the world, and his anger threatened to consume him and obliterate any opportunity for loving interaction with his family. I cannot remember a patient whose anger, as well as the emotional suffering it caused, was more excruciating.
Douglas's suffering demanded extraordinary measures, and I struggled to help him. In striving to help Douglas find a way to ease his suffering, my capabilities and those of our hospice team were sorely stretched. I did not know what, if anything, would work. But we were committed to keep trying.
On a warm, gray Saturday morning in January, Douglas Kearney was, driving his pickup down the hill from his home in south Missoula when his world changed forever. Beside him sat his older son, Peter. As the truck neared a red light, Douglas barked at Peter to step on the brake, because he could not move his leg. His dad often kidded, so the disbelieving fifteen-year-old sat still. Fortunately, the light turned green just in time; unfortunately, this time Douglas wasn't kidding.
After struggling with the pedals, the frightened pair pulled into a parking lot, and the forty-six-year-old husband of Barbara and father of Peter, Darlene, and Sean went into a full grand mal seizure. Peter yelled for help; within minutes an emergency vehicle rushed Douglas to St. Patrick's Hospital in down town Missoula. His vital signs were stable. The doctor examined him and ordered a battery of tests. Peter telephoned his mother. "Something's wrong with Dad," he told her.
It took Barbara Kearney an hour and a quarter to drop off her younger son and arrive at St. Pat's. Douglas had already had a series of laboratory tests and X-rays, including a CT scan of his brain, and had been transferred to a room. He sat awake and comfortable in his hospital bed, gazing aimlessly at the snow-laced Loco Peak and worrying about what he would say to Barbara when she arrived. On her way to his room, Barbara was stopped by Douglas's physician, Dr. Foster. He said that Douglas was feeling better and was in no immediate danger, but that he was still very concerned. He hinted at a problem with Douglas's brain, then cut off the conversation. "I don't like to talk about a patient away from the patient. Let's go see him," he said.
Barbara is tall and slender, with long, dark brown hair and a permanently furrowed brow; her face relaxed when she saw Douglas sitting up. She hugged and kissed her husband, who kept muttering, "I'm OK, I'm OK." They turned expectantly toward Dr. Foster, who was leaning against a wall near the door. "Tell me about cancer in your family." Then, as if to fill the gaping silence, he added, "You've got a lesion in your brain; a tumor in your left frontal lobe."
Barbara bowed her head in numbed disbelief, but Douglas blurted out, "You're shitting me! How can it be a brain tumor? I'm supposed to get a lung cancer, for Christ's sake!" In fact, it was. As Dr. Foster went on to explain, although Douglas's seizure had been triggered by a brain tumor, the growth was the offshoot of lung cancer, small but visible on his chest X-ray, that had almost certainly metastasized and spread.
A grim realist, Barbara had always half-assumed that her husband would succumb to cancer. The family tree, she had learned early in their marriage, "was just loaded with it." Moreover, Douglas's lifelong smoking habit provided fertile ground for the disease; over the years she and Douglas had often argued about his smoking. Now that she was right, she felt no satisfaction but instead a sense of numb unreality. She heard the diagnosis with no doubt that it was true. Yet her sadness mingled with a hot anger she felt toward Douglas for bringing this on. His bullheadedness was now going to not only rob her of a husband but destroy her children’s father.
Barbara Kearney is the kind of person whose world is orderly and under control. Whether confronted by a broken kitchen appliance or a broken brain, Barbara needs to understand why and how it happened, know what is required to fix it, and do whatever is necessary to get the job done. When she heard the details of Douglas's diagnosis, she immediately telephoned the National Cancer Institute, a government research and information agency, and asked for everything even vaguely related to Douglas's illness. She pored over stacks of studies and journal articles, learning the science and vocabulary of cancer and the "prognosis and protocol of nonsmall cell adenocarcinoma of the lung." She memorized the statistics and drug interactions, delved into the complexities of cellular biology, and carefully read about every available treatment option. Barbara was doubly motivated: She was going to do everything possible to take care of Douglas, and she hoped that this knowledge would lessen her terrible fears and ease some of her anger.
Douglas had a different temperament. He was an ex-army sergeant, a former fire jumper, and a construction worker who possessed a rigid "can do" optimism about his life and his abilities. Defeat was not in his vocabulary. He believed in traditional values: He belonged to the Loyal Order of Moose and regularly attended services at St. Francis Xavier's. And he believed in playing by the rules. If he did everything asked of him, he would be rewarded; if he fought the good fight, he would win. So, while he suspected that this cancer might eventually prove insurmountable, he chose to believe he could beat it. His life, so far, had justified this determined optimism. He and Barbara had been through difficult times before. They had not only survived, they had thrived.
Above all else, Douglas Kearney prized family life. Raised in a strong Catholic family, he carried into adulthood an almost old-fashioned belief in family roles. His most cherished duties were those of traditional breadwinner, devoted husband, and loving father.
The goal of fatherhood had been threatened early in their marriage when he and Barbara had tried unsuccessfully to have children. Rather than accept what seemed to be fated, he had applied his determination to creating a family. Through Catholic social services the couple adopted an infant boy and, within fifteen months, an infant girl. Then, as so often seems to happen, a few years later Barbara became pregnant and gave birth to their son, Sean. Their joy was tempered, but not extinguished, when he developed the first signs of autism.
Sean was a blessing in disguise for Douglas. As a role model for Peter, Douglas was either quiet and unemotive or brusque and commanding. But with his younger son he showed a softer side. With Sean, Douglas's tough, macho exterior gave way to tender emotions evidenced by warm words and easy touching. The clash between Douglas's cold, uncompromising reason and his gentle, loving soul would become the hallmark of the struggle that defined the final months of his life.
Perseverance had always paid dividends for Douglas, certainly in forging a family. He was now going to apply his steely determination to beating his illness. After a lung biopsy that sealed the diagnosis, he charged ahead with a raft of treatments. In January, Barbara accompanied him to Seattle for surgery to remove some of the tumor in his brain; in February, surgeons cut away parts of one lung. This is very aggressive therapy. Even with surgery to remove every sign of disease, when lung cancer has already metastasized to the brain at the time of diagnosis, it is a rare person who survives for long, and damn little really helps.
As soon as Douglas regained his strength after the surgeries, he signed on for extensive radiation and chemotherapy. Crippling headaches and growing weakness on his left side signaled that he was losing ground. He spent the summer resting and gathering strength. In the fall, new tests showed that the cancer had spread to his liver.
Douglas and Barbara functioned like a general and aide-de-camp. Douglas pinpointed the targets, and Barbara assembled and mobilized all the necessary weapons. He asked the big-picture questions, and she studied and absorbed the medical literature. When it became painfully clear that the cancer was spreading, Douglas demanded that Barbara tell him what the medical studies reported about his odds of survival. She resisted, knowing that the "cure" rate--living beyond five years--for a stage IV lesion of a certain size in someone his age was only 2 percent. She had seen signs in her husband of discouragement, watching him "go through all the stuff that Kubler-Ross talks about: the bargaining with God, the denial, and the anger, a lot of anger," and she did not want him to become discouraged any further. But Douglas was demanding, and Barbara usually acquiesced, and she finally told him. To her surprise, Douglas was buoyed by the news.
"He figured somebody was in that 2 percent, and he was going to be in it too," she told me. "His attitude was based on five points: because of his youth (he wasn't some eighty-nine-year-old), and our kids were so young. He had a lot of insurance and good medical care. And his fighting spirit--he was going to try anything and everything." As Douglas plunged into treatments, Barbara bravely soldiered on beside him and only once gave in to the enormity of their struggle. Back home after the second surgery, Douglas lay in bed resting, and Barbara sat beside him. Her once handsome husband had lost all his thick, black hair, which had been replaced by ugly scars, and the muscles on his six-foot-plus frame had withered. Seeing him this way, she erupted into hysterical crying, wailing over their fate. Douglas opened his eyes and grasped her hand. "Stop!" he commanded. "You have to stop this right now!" His voice turned plaintive. "Can't you see this is taking all the guts I have to fight it? I don't have strength enough for both of us."
In December they returned to Seattle for still more brain surgery. The new year brought more radiation and chemotherapy to stem the growth of a recurrent tumor in his chest, which pushed on his breastbone and produced a visible lump.
Normally a little testy and curt, Douglas over the months became even more temperamental. Sarcasm and flippant remarks had always been his style, but now his amusing comments were mean and cutting, particularly with family and medical people. When sweet, demure Barbara couldn't answer his questions about a drug's side-effects, he'd ridicule her intelligence. When Peter took all morning to cut the small square lawn in front of the house, Douglas accused him of being lazy. He lashed out at the doctors and medicine that were not helping him. When Dr. Foster had no cures for his crushing headaches or paralyzing seizures, Douglas ranted about useless medical technology. Everyone and everything was failing him, and he struck back.
His temper and anger grew as virulently as the tumors. Barbara recalls, "It was as if no matter what we'd done to any part of his body, after every procedure he was a little less Douglas. There was no way he could suffer the insults that he did and not change--not only the physical trauma of cutting into the brain but also the chemical assault, the chemotherapy, other medications, even the anticonvulsants. And there was the psychological pressure of knowing that unlike the other men in his family, he wouldn't see his children grow up or even live into his sixties."
Anger consumed Douglas. That is what I remember most from our first meeting. We met in June at his house, about a year and a half after his seizure in the pickup. The Kearneys lived in a split-level ranch house in a neighborhood pulsing with young families. The sidewalks were speckled with bicycles, and many of the fenced yards harbored a barking dog, bright plastic toys, and a barbeque grill. I talked with Douglas and Barbara in the living room, which was decorated with a perfectly matching couch, easy chair, and broadloom carpet. The only odd piece of furniture was a round, individual-sized exercise trampoline in front of the television. This was for the constantly moving Sean. I was introduced to all the children as they wandered in and out, but clearly they were under instructions to keep quiet and play elsewhere.
Given the barrage of treatments and surgeries, Douglas looked remarkably good. Dressed in sport shirt and slacks, he was thin but not wasted, pale but not sallow. The telltale signs of his ordeal were on the left side of his body--his face and eyes drooped, and he could barely move his left leg or arm. His head was largely hairless, with new growth just beginning to cover the surgery scars.
The hospice nurse, Bonnie Brown, and his oncologist had both asked me to visit him. Douglas's temper was frightening people. Bonnie thought that maybe I could help him get beyond whatever was feeding his anger. Dr. Foster was at his wits' end trying to help Barbara deal with Douglas's outbursts and would be grateful for any help I might give. I knew that it would not be easy. I was familiar with his story from my routine chart reviews and our weekly marathon hospice meetings. At one meeting Sister Vivian, who ran the cancer support group that Douglas and Barbara attended, had delivered a sobering opinion. "Douglas will die with his anger. It is the cause of his suffering, but he knows no other way." She spoke slowly, her voice echoing the sadness in her eyes.
I very much wanted to connect with this tortured man and his distraught wife. His anger was causing suffering far beyond what I usually encounter in dying patients. Like a raging inferno, it was sucking the air out of his relationships with his wife and children. The blaze left no room for expressing the sadness and loss they were feeling. Unless he somehow allowed himself to admit that he was dying and grieve the losses that death meant, his suffering would become unbearable.
I had read Douglas's chart and I knew about his surgeries, therapies, and medications. I also knew that he had recently decided to stop treatment, admitting, at least on an intellectual level, that a cure was impossible. Emotionally, however, he was tightly controlled, searching for a way to apply his take-charge determination.
It took only a few minutes to discover that Douglas and I had both grown up in New Jersey, and we talked about the things we missed about the East, like good Italian food and the boardwalk. It was small talk, but I was getting a sense of him and Barbara as people. In medical parlance, it is called "taking a family history." Eventually we got down to the medical business. After some general questions about his condition, I asked him if he was in pain. "Nope, I feel pretty good, Doc. Oh, I get some aches and pains, but just little stuff, nothing major," he stated. Barbara sat by his side holding his hand, which he seemed to tolerate, not invite.
"I see you're taking Tegretol, Dilantin, and Imipramine." I scanned his medication list. "And that you've stopped Methadone. That's a little unusual. Were you having problems with it?"
"Well, the pain is nothing I can't deal with. I'd take it if I needed to. Actually, Doc, I'm doing pretty well. I know I'm dying, but I can't fix that. And apparently none of these damn doctors can--or will--do anything to fix it. No sense griping about something you can't change," he declared defiantly. Barbara opened her mouth to speak, but a quick glare from him stopped her. I nodded, but his admission was unconvincing.
I asked about the cancer support group. He continued, "The cancer support group's helping a lot. Sister Vivian's real good at getting people to come to grips with their situation. Barbara likes it a lot, don't you?" The look she gave Douglas contained an exasperated "Oh, Douglas!" Her mouth formed an obedient smile, but her eyes revealed a mixture of sadness, bitterness, and disappointment. And I remembered Sister Viv saying that Barbara had to twist Douglas's arm to get him to attend the support group. It was he, not she, who was fleeing the emotions of his illness.
"I'll tell you though, there are people there in a lot worse shape and a lot more screwed up than I am. There's this one woman there, who's got lung cancer and is still smoking. Holy Mother, Doc, can you believe it? I get so angry when I see her outside the meeting, puffing away, I could shake her. Smoking's the reason I've got this thing." He glanced at Barbara, checking to make sure he had preempted her response.
"You know, Douglas, as I read your medical history and listen to your story, anger is a theme that runs through the last few years of your life. It is evident in our conversation today." I probed to see how he would explain his anger.
"Maybe," he agreed, "but I've got a right to be angry. Look at me! I didn't used to be this ugly, you know!" he chortled. "Between the chemotherapy and the Decadron, I look like a bald Pillsbury Dough Boy. I've done all the treatments, seen all the doctors, even took those experimental drugs." He turned to Barbara. "What's that called?"
"Yeah, clinical trials. I did it all. I jumped through everybody's hoops, and where'd it get me? You doctors don't know jackshit about what I'm going through." He was yelling and now glared at me. I was glad I was out of fist range. His flaring temper seemed to have a life of its own, and it was not hard to imagine it erupting into violence.
"You've been through a lot, that's for sure. You've put up with more than most people could ever imagine. I think you still are. You know, people who are sick--especially when the illness keeps progressing, despite everything they do--often suffer from more than physical pain. Serious illness can nibble away at parts of a person until eventually it feels like you're falling apart."
My words were interrupted by Sean coming into the room, followed by Darlene trying to contain him. "We're going to the Dairy Queen, Mom," she announced cheerfully. "Can I have some money?"
"In my purse, there's lots of change in the bottom." Barbara pointed to the bag on the desk in the hallway. While Darlene fished through Barbara's purse, Sean wandered over, in his rocking gait, to the vicinity of his father. Douglas reached out and stroked his arm, and Sean mimicked the motion, then returned to his sister's side. For a moment, Douglas's face relaxed. The children disappeared out the front door, and I continued.
"This is an extraordinarily hard time for you and your family, a sad time for all. The loss for of you is enormous, and I can only imagine the pain you must be feeling.”
"Yeah," Douglas responded. "Think of how it feels, not being able to go hunting with your kid. And not being able to teach your daughter how to drive." His voice trailed off, then snapped back. "What really worries me, Dr. Byock, is the money. I want to be able to leave them something, but there's not much left." He added sarcastically, "Good thing I've stopped the surgeries. They drain all the money you have. Maybe that's when they stop!" He looked over at me to see if the jab had landed.
Barbara's eyes teared up. I wondered if Douglas had ever cried during these long months of illness. Probably not.
I addressed both of them. "Have you talked to your children about what's happening? Have you told them how sick you are? Although they may not show it, they may be more afraid than you are. Being this ill—dying--is especially terrifying when people don't talk about it." I would not have used the word dying if Douglas had not used it himself. I chose it now because it allowed me to test how comfortable or threatened Douglas and Barbara were with discussing these issues. "Your kids are losing a parent, and I can't think of anything more frightening for a child. Perhaps, during whatever time you have left, Douglas, there are things you can do for your children, with each of your children, to let them know how much you love them, simple things, but things that may be very important to them in the years ahead."
Douglas sat motionless, his face frozen. Barbara bowed her head, as if in deep thought. They both looked tired; it was time for me to leave. I gathered up my briefcase, stuffed my notes into it, and rose to leave. "I'd like to come back," I offered. "To see how you're doing, make sure your pain medications are helping, and talk some more about what you're going through."
Barbara lifted her head, and her slight nod was enough permission for me.
"Sure," said Douglas, "I'm around, I'm not going anywhere. At least not for another few months, they say," he added, with no humor at all.
A week later, I visited the Kearneys again, hoping to break through Douglas’s steely denial and nudge him toward working on issues of life closure and his relationships with his family. Barbara looked exhausted as she greeted me at the door. Her face was drawn and she slumped.
“Please come in, Dr Byock,” she said. ”Forgive the mess. Doug’s brothers have been visiting and his niece is coming tomorrow.” Except for a sweatshirt dropped in front of the television, the home looked spotless and tidy. Compulsively straightening and cleaning helps distract the mind from larger, uglier concerns.
"How's he doing?" I asked, glancing down the hall toward the bedroom.
"Not so good. It's been a bad morning. Ever since he woke up tangled in the sheets, he's been yelling at me and the kids."
"I thought he and I could drive down to Break Espresso for coffee and pie. It may be easier for him to talk there," I suggested. Douglas seemed indifferent, and offered no resistance. We bundled him into a warm jacket and helped him into my old Isuzu Trooper.
One of the beauties of living in Missoula is how easy it is to get around. No errand takes more than a fifteen-minute drive, and metered parking spaces always open up just where you want them. Break Espresso is one of my favorite haunts. Its espresso and coffee are as good as anywhere in town, and its large round oak tables are spread out, perfect for quiet, solitary paperwork or private conversations.
During the drive, and as we picked up our coffee, Douglas told me about his seizures, which were gaining in intensity and frequency. They usually attacked his left side and lasted a few seconds or many minutes. Although he did not lose consciousness, they were virtually paralyzing.
"I can't believe they're coming back like this," he said. "It's only been a couple of months since the last surgery. Jesus, give me a break! This is so unfair. I've done everything," he spat out.
"Yes, it is unfair, Douglas."
"I'm going in for another MRI tomorrow," he said. "You know, they're discovering new things all the time. I saw something on TV last week about, I think it's called interferon, and all the success they're having with it."
I looked skeptically at him.
"I know, I know," he said. "You don't have to tell me. I got Barbara for that," he added angrily. "She knows it all, the jargon, the statistics, everything but the time and date."
"You know what else is not fair?" I said. `Barbara gets a lot of your anger. She's suffering too, you know. Both of you are suffering and hurting and grieving.
"She knows I love her, Doc. You don't have to worry about that."
"Good, Douglas, because she needs to know that. Your children need to know you love them, too. As parents, we assume our kids know how much we love them and are proud of them, but we don't ever actually say so. We work long hours for their sake. We worry and plan, scrimp and save, and all the time we assume they know we are doing it for them. But what our kids see is that we are usually preoccupied and don't have much time for them. I only found out that my dad was proud of me by what the customers in his business would tell me he said to them.
"Even if it seems obvious, I think it's important for us parents--especially fathers--to tell our children how much we love them. So Douglas, even if you think Peter, Darlene, and Sean know you love them, it's worth saying. It's especially important now. And knowing that at times your anger seems to get away from you, I think it's important that they hear you say you love them and how proud you are of them. Don't leave them with a memory of an angry, bitter man."
Douglas stirred his coffee and the metal spoon clanked against the porcelain cup. "I hear you, Doc."
I asked if there was anything I could do for him. He responded quickly. "Yeah, make sure I don't suffer, Doc." He locked my gaze. "And don't let me make a fool of myself as I die."
"I hear you, Douglas. That's a promise." With the pie finished and the coffee cold, we headed for home.
Initially, during the next few weeks, Douglas did better. His medications were adjusted, and his anger seemed to lessen just a bit. But only for a while. The next time I saw Douglas, things had again gotten worse.
I was working a Friday night shift in the Community Hospital emergency room when Barbara telephoned around nine P.M. Her voice quivered as she told me that Douglas had been ranting in the backyard, wearing only boxer shorts--yelling at the neighbor's dog, shaking his cane menacingly, and urinating into the bushes. I asked her if she felt she was in any immediate danger, and she said that Douglas was sleeping now. We hung up, agreeing that I would come over first thing in the morning after getting off shift.
The ER was relatively quiet that night--a couple of car accidents with whiplash injuries, a few lacerations, and one sick infant. Around four A.M., when I was dozing in the call room, a nurse told me that a tearful Barbara Kearney was in the ER and needed to see me.
Under the hospital's fluorescent lights, Barbara looked pallid. She wore a lightweight jacket and wrapped her arms tightly around herself to stop shivering.
"Dr. Byock, I'm so sorry to bother you, but Douglas's gone crazy. Before he finally fell asleep, he was yelling at the children, telling Peter he's going to sell all his things and saying he's going to put Sean in a home. He was waving his cane in anger. I'm afraid, and the kids are so confused and afraid. I don't know what he's going to do next." She stopped to catch her breath. "Oh, this isn't right," she wailed. "I promised him that I wouldn't let it happen this way, losing all his dignity, dying like some madman, not the Douglas I know. I promised him."
I folded my arms around her and held her as her body shook and tears rolled down her face. Dignity is important to everyone, but especially to someone who is dying and has already begun losing control over much of his life. And while many people think of dignity in terms of appearance, independence, and personal embarrassment, people close to a dying patient seem to know intuitively that their loved one's dignity does not depend on these. Dying is not inherently undignified, it is simply part of being human. With supportive family and friends, even needing help with basic bodily functions need not diminish dignity. But Barbara knew--and I agreed--that Douglas's bizarre behavior in the backyard was undignified.
"I know, you're right," I comforted. "We're going to have to do something. But our options aren't many. Douglas has to face his sadness. Anger is familiar to him, almost comfortable, and sadness is unknown and terrifying. I think for Douglas, acknowledging the sadness that lies on the flip side of his anger may be the only way through his suffering. I'm certain that when he finally faces it, it won't be nearly as frightening." I paused, waiting for Barbara to absorb this. "But to do this, he needs a safe place. I wish we had an inpatient hospice facility in Missoula, and some day we will, but for now I think we will have to use the psychiatric unit at St. Pat’s." For a moment Barbara looked frightened again.
"I know, I've been thinking the same thing." She paused. "Will they put him in a straitjacket?"
“No, certainly not. But he will be on a locked ward for the first few days. I don't think that'll be necessary for long, but it depends on Douglas," I told her. "I know it sounds scary, but he'll be safe. And he'll be with people who can help him talk about his fears and sadness. His anger's gotten so out of control it's making him sick." I told Barbara that I would come to the house to talk to Douglas and take him to the hospital after I finished my shift. I warned her that it might not be easy and that we would have to stick with our decision and take him against his will if necessary. I explained that the law allows a doctor to hold a patient for seventy-two hours for psychiatric evaluation and treatment if the patient is an imminent danger to himself or others.
The ER traffic picked up considerably after Barbara left. An elderly woman with pneumonia and two more sick children kept me moving, so when I finally left, around nine A.M., I was jangly from lack of sleep, too much coffee, and nervous exhaustion. And I was worried about Douglas, not knowing how he would react to being approached about a stay in the psych unit. His outbursts verged on being psychotic, and I was afraid for Barbara, and for him. In his state of mind, he might indeed hurt someone, or himself.
As I drove up I could see Barbara standing over the kitchen sink, watching the street outside for me to arrive. I recognized Bonnie Brown's red Ford Bronco parked across the street. I had paged Bonnie around seven-thirty and asked her to meet me at the Kearneys' house. Barbara opened the front door, I took her hand, and we just looked at one another for a moment, as if to confirm our resolve. I told her that everything would turn out all right; I needed to hear those words, too, feeling the uneasiness of fatigue and apprehension. I went in to speak with Douglas.
He was in his pajamas, leaning on his cane in front of the bedroom closet, ripping clothes from hangers.
"What the hell are you doing here, Doc?" he demanded.
"Barbara's worried about you, Douglas," I said, keeping my voice calm and not getting too close to him. "And I'm worried about you, too. You must be in great pain. I can only begin to imagine how bad you feel. I'd like to help, but at the moment that means going to the hospital."
"The hospital? I don't need to be in the hospital, Doc, I'm not that sick, and besides, they've told me there's nothing they can do for me."
“Douglas, you need to be in the mental health unit, the psych hospital. At least until things cool down a bit."
"The psych hospital!!! Now I know what's happening. She's got you believing I'm going crazy. She's been talking about me behind my back. I've heard her whispering on the phone, she thinks I can't hear. Oh, sure, I get angry at times, who wouldn't with their wife pulling this kind of shit! Well, get the hell out of my house. You're not welcome here. Get out before I throw you out! I'm not dead yet! She wants my money, that's all she's ever wanted!" He spat out the words.
"Douglas, that's not true. Barbara loves you very much, and she's very worried about your safety. You can get angry with me if you want, but for your own safety and the safety of your family, you really need to be in the hospital. Remember when you made me promise that I wouldn't let you embarrass yourself as you died? Well, that's what it's come to." I stayed by the door. The bedroom was a shambles, with clothes strewn about and torn magazine pages littering the bed and floor.
"No way, I'm not going back to that fxxking hospital. I'm finished with those assholes! And you can't make me," he growled.
"I'm afraid I can, Douglas." I paused, hoping he'd calm down. "If it comes to that, I can and I will. I can have you held for seventy-two hours. Please, Douglas. Let's go to the hospital. I'll drive you or Barbara can drive you down."
"You're going to put me in the loony bin! No way! I'll shoot myself first. I've got a gun, I'll shoot myself!" Douglas began to wobble, so he slowly backed up and plopped down on the edge of the bed.
Although Douglas was weak, he wasn't resting. I took some solace in knowing that Barbara had given Douglas's rifle to a friend to keep for him. This wasn't going the way I'd hoped.
"No, Douglas, you're not going to hurt anyone. You're going to the hospital, but if you won't go voluntarily, I'm going to call the police to help me get you there. It's up to you, Douglas. You can go with me or go with the police. Either way, you're going to the hospital."
Neither of us moved. Douglas glared at me as if I were Satan. I held his gaze for a few moments, waiting for the fire to subside. The sagging left side of his bony, angular face made him look fearsome.
"Barbara, get my gun, damn it!" he commanded. She responded only by coming to his side and saying, with remarkable composure, "No, Douglas, remember, I gave your gun to Ed. Dr. Byock’s right. You need to be in the hospital.”
I had called the city police shift commander before I left the ER to let them know what was going on. Now I needed them to come by. I used the kitchen phone while Barbara and Bonnie stayed with Douglas; then I returned to the bedroom.
I sat on the floor by the door while Douglas lay back on the bed, staring at the ceiling, rhythmically slapping the sheets with his cane. The morning sun filled the room, and I thought how nice it would be to fall asleep in the soft yellow light. Barbara sat down beside me, and I held her hand as we waited for the police to arrive.
The two deputies looked young, but they were probably in their late twenties and were both physically large men, imposing in their dark uniforms and huge leather utility belts. Barbara led them down the hall to the bedroom. As we huddled in the doorway talking, Douglas lay motionless on the bed. He had stopped slapping the cane.
"Douglas, this is where we're at: You can either drive to the hospital with Barbara or me now, or these two gentlemen will escort you there. It's your call, voluntary or involuntary."
The deputies knew that the situation called for slow, deliberate calm, not heavy-handedness. "He's right, sir. If the doctor says you need to go, we'll help him get you there. We'd rather not have to restrain you and take you in, but ..:” As young as they looked, these guys were clearly pros.
Douglas changed strategies. He looked pleadingly at Barbara. "Oh, I'm so sorry, honey. I don't know what gets into me. Please, it won't happen again. Please, please. I want to stay here with you and the kids. You know I'd never hurt you. I don't have much time left. Please." He was sitting up, his pajama top so large it seemed almost empty, his face ravaged by scars, scraggly hair, and thick beard stubble. He didn't like what he saw in Barbara's face. Her eyes showed pained sadness backed by determination.
"It's really come to that, huh? Boy, I really must be fxxked up." He stared at the floor. "OK, well, let's get on with it, then. Barbara, where's my coat?"
We left Douglas and Barbara in their bedroom. She helped him dress, and they spoke. I heard him say, "I just can't believe you'd do this to me." But when they emerged, Barbara said that Douglas had agreed to let her drive him to the hospital. The officers and I would follow in our own cars.
The locked psychiatric unit of St. Patrick's Hospital is a place of dimmed light and muffled noises. Its soft light, dense tweed carpeting, and pale earth-tone colors make it feel like a modern monastic retreat. Douglas's room contained only a hospital bed and opened onto the nurses' station. Like a public aquarium holding exotic fish, the room had a glass wall (with a privacy curtain that could be pulled from outside the room), so Douglas was constantly under observation.
The nurses' detailed notes about Douglas's time on the unit, plus what I gleaned from daily visits with him, confirmed the level of his despair. Douglas spent the early days in his room sleeping or staring out the window toward the Conoco station overlooking the interstate. He was irritable and short-tempered with nurses and visitors. He asked a nurse, "What would happen if I didn't take the seizure medication? Could a seizure kill me?" When she told him that it probably would not, he launched into a diatribe over Barbara's treachery. "She's going to pay for this!" he declared.
Barbara agonized for an entire day before visiting Douglas in the hospital. Since his first seizure, she had always been with him or close by, and all her instincts told her to go to him immediately. She reined in her heart and listened to her head. "He needs space from me," she decided.
When I visited Douglas the next morning he was in bed and had cleaned off his breakfast tray.
"Good morning, Doc. Checking up on the prisoner?" he asked, without rancor.
"Morning, Douglas. I see the food agrees with you," I replied.
"Oatmeal. Even a hospital can't ruin oatmeal. All you got to do is add hot water," he said evenly, and then scowled. "So when the fxxk do I get out of here?"
I sat on the edge of his bed. "That depends on you, Douglas. Right now, you need to be here. You have to realize that all your anger and venom is a very destructive way to avoid admitting how much you're losing."
"I'm not angry anymore," he hastily interjected. "That was yesterday. I'm over all that. It's under control. I'm much better now."
"Like hell you are," I snapped, choosing a tone that matched his own. "You've been feeding me that line, basically bullshitting me and yourself, since we first talked in your living room. I'm not buying it. The fact is that your anger has gotten out of control. You're not here because I'm mad at you or because Barbara is mad at you. You're here because we're both worried about you. It's pretty damn obvious how much you’re hurting. She loves you, Douglas and, although you may not be able to hear it, I care about you, too."
I paused. He remained quiet, gazing toward a far corner of his bare room. "I think you're still keeping your real feelings at bay. You say things like `I'm doing OK, Doc.' And `Oh, there's nothing any of us can do about dying,' as if that diminishes the pain. But you're also a smart and honest guy, and you know what the fact of your dying really means. You're losing your family and your family is losing you. As long as you can't admit to the sadness, they really can't either. They have to pretend to be strong, like you. So a lot of important things go unsaid.
"You asked how long you have to be here, and I don't know yet. You're not nuts, Douglas. Not yet. But knowing you're dying and dealing with it by denying the pain is slowly making you crazy. Your anger has become a real threat to Barbara and the kids. Behind it, I can feel your sadness. What is most important now is to share your sadness."
I waited. After a moment he looked up. "How would I do that?"
"Begin by telling the kids how much you love them."
"They know I love them, Doc." he retorted.
"They probably do, but hearing it from you aloud may be really important. We parents tend to assume our children know we love them and are proud of them. Your kids will have a lifetime to think back on these days. You will always be their dad, Douglas. The fact that you didn't die suddenly gives you an opportunity to make sure they know how proud you are to be their father and how much you're going to miss them. Until you can own up to the emotions that come with that knowledge and share your grief with your family, and listen to theirs, your anger will make it impossible for you to go home."
Dry-eyed, he declared, "You can't keep me here forever."
"Pretty close to it. The law says I've got seventy-two hours now, and after that I put your case before a judge. You may think that you can b.s. a judge and convince him that you're ready to go home, but I'm telling you, no way. I can make strong arguments for holding you indefinitely." I sounded hard, maybe even heartless, but I had to deliver the cold truth: Squirm as he might, there was no way out.
Over the next two days, Douglas changed, physically and emotionally. He looked haggard and beaten, and the tumor that was pushing on his breastbone seemed to be growing by the hour, intensifying his physical pain. I think the pain scared him; it was the alarm that would not stop ringing, wearing him down, forcing him to face his vulnerability. The psych nurse reported that Barbara visited daily, bringing letters from home, and that for the first time, the evening of his second day on the unit, they cried in each others' arms.
On the third day I noticed a change in Douglas as soon as I saw him. There was no anger in his greeting or posture. His calm was almost unnerving. I didn't know what to think. He spoke softly, but was eager see me. "I'm glad you're here. I had a nightmare last night." In his dream, he told me, he had visited his mother's grave and unearthed her body. He could not recall many details, but the dream was clearly an emotional watershed. Somehow in the dream, in the shadow of mortality, he had confronted his identity as a son--and, perhaps, as a father--more deeply than ever before. We were alone in the windowless, dimly lit patient lounge, and he was in a wheelchair parked in front of the television.
"You probably think I'm crazy," he despaired. He spoke slowly and softly, but his tone was urgent. "I don't know what I'm thinking, but this thing in my chest is growing. Oh, God, I'm so scared. I know I'm dying, I could die tomorrow." He paused and clutched my arm, adding emphasis to what came next. "I don't want to die in here. Please don't let me die here!" he implored.
I did not say anything for a moment, and just listened to his fears. At last, I thought, with poignant relief: The wall of denial between his anger and sadness had been breached. Within the dream he had experienced sadness and found that it was not overwhelming, as he had feared, nor as uncomfortable as the isolation he was feeling. His work was not done, but could now begin in earnest. The taskwork of accepting the finality of life and his changed sense of self and completing his relationships lay ahead.
"It's always been up to you, Douglas. Your time here offers you an opportunity to look behind your anger and frustration, and to explore your fears. Once you do that, I think you'll feel less afraid."
Two days later, I met Barbara and Douglas together in a conference room on the ward to make plans for his discharge and to talk about caring for him at home and involving the children. They were waiting for me in a tiny conference room situated at the end of the psych unit, away from the general traffic. With Douglas's wheelchair edged into a corner and Barbara standing beside him, our knees almost touched as I sat on the couch. He looked like a different man: Despite the bony angles of his jaw and brow, which had become accentuated as he lost weight, his eyes radiated peacefulness. I had never seen him look so at ease with himself. I had become used to being on guard in Douglas's presence. This change in him, if it was real, would take getting used to. Barbara's hand was on his shoulders, and his hand rested comfortably over it. Her bitterness seemed to have faded with Douglas's anger; now that he had accepted his fate, she could forgive him.
At first I did not say anything; I just smiled, reflecting this welcome warmth.
"We were wondering if Douglas could be discharged on Monday," Barbara said. "He wants to be home, and Peter and Darlene want to help take care of him."
"I can't think of any better care," I said.
"You know, Sean hasn't been able to visit his Dad," Barbara explained. "The lights and sounds here would be too stimulating."
"I miss him," Douglas softly interjected.
"But I think we're going to need more help, you know, a real nurse," Barbara said.
"Yeah, someone who can change a catheter without spilling," Douglas's irritation passed over him like a brief cloud. He would probably always have that jagged edge to his personality, I thought.
"We can set up a schedule for a hospice nurse to be there daily, or whenever you like," I offered.
"Yeah, that's good. Give Barbara a rest," Douglas said. His voice softened as he looked into the distance. "I have to apologize, Doc. I know you put up with a lot of shit from me. I got to tell you that being in here even for these few days--being forced to work things out, well, someone should have done this to me twenty years ago. This has been the best experience of my life." At a loss for words, I could only manage a smile. That was the last thing I had expected to hear from Douglas Kearney.
In accepting his sadness, Douglas reconnected with parts of himself that threatened by his impending demise. He was no longer husband or father on the old way, but he still was Barbara's husband and his children's father. By acknowledging his losses, he had, paradoxically, become more whole. The exhilaration he expressed typifies the experience of personal growth, the sense of renewed mastery in a changed life situation. With this new strength and sense of wholeness, Douglas could deal with whatever the future held.
Douglas's acceptance of what was happening to him and his new sense of self altered him in more ways than one. When he returned home after his time in the psych unit, he started smoking again. He had thought it all through and decided that smoking was one pleasure he no longer had to deprive himself of. Having entered a new phase of life in which the priorities and rules were different, he was determined to live fully and enjoy whatever time was left. Barbara saw it differently. She pulled me aside when I came to the house the day after he was discharged.
"Could you please talk to Douglas?" she implored. "It's so upsetting. It's like he's trying to hurry up his death with his chain-smoking. It's so unlike him. When he stopped treatment in April, after going through all those surgeries and drugs and pain, he asked the doctor, `Would you think me chicken-shit if I quit?' And you know what the doctor said? `Douglas, you've fought harder that any cancer patient I've seen.' And now"--her voice quivered--"he says it's the only thing left that gives him pleasure. But it's like he's trying to kill himself." When Barbara was discouraged, her shoulders sagged and her head bent.
"What am I going to do?" I said softly, commiserating with her. "Tell him smoking's bad for his health?"
Douglas asked me to push his wheelchair to the back patio so he could smoke outside as we talked. It was a sunny, warm day, and the neighbor's dog yapped at us, but Douglas did not seem to notice. He held a cane to help with maneuvering, and while I was talking, he kept pushing the tip across a crack in the cement as if it were a piece of rope he was trying to move. He said little as he puffed on the cigarette and hypnotically poked at the crack. I realized that he was hallucinating, seeing something on tile patio. I could think of six things that might cause it, but at this stage these medical musings were of little practical value.
"My dad's coming this weekend," he told me. "He lives in Connecticut. We've sure had our tough times. It'll be nice to see him now. I got rid of a lot of real old baggage in the hospital. Childhood stuff. I think we can be friends. You know," he smirked. "I think I've grown up. Better late than never!" He chuckled wryly.
Peter came outside while we were talking. He seemed a little stiff and tentative with Douglas, as if waiting for the fiery father to resurface.
"Mom said to ask you if you want a cup of coffee."
"No thanks, son. Dr. Byock?"
I shook my head, and watched Douglas reach out to touch Peter. As Peter looked at his dad, I saw the warmth in both their faces, and as the boy disappeared back into the house I noticed how relaxed his posture had become.
Even with the change within himself, Douglas did not die an easy death. As the tumor in his head grew, he had difficulty swallowing. So he stopped taking his dexamethasone tablets, a steroid that was helping control swelling around the tumors, and developed a constant twitch and restlessness. His days shortened as he lapsed into unconsciousness, broken only by brief periods of wakefulness. And the hallucinations worsened. One afternoon as Barbara brought him back inside from the patio, he looked at their house and, apparently mystified, asked, "Who lives here?"
But when he was lucid, Douglas could not love his family enough. He would not let Barbara out of his sight, and they relived happier times and humorous adventures as newlyweds and new parents. During these glorious moments, sitting on the end of his bed like devoted followers, Peter and Darlene hung on every word and laughed at every joke.
Somehow Douglas sensed when death was very near. The morning he died, he told his children that he probably had only a few hours left. He said goodbye to each, one by one, and then instructed them to go to their grandmother's house. When they left, Barbara lay down beside her husband and put her arms around him.
I made my last visit to Douglas around nine that morning. Bonnie had been there since six, and we reviewed the recent adjustments in the medication he was receiving to prevent seizures and control his pain. He was comfortable but beyond responding. I touched his brow to let him know I was there. I gave Barbara a hug and told her I'd keep checking in.
Douglas Kearney died around eleven o'clock. Barbara was at his side. For over half hour she sat holding his hand and intermittently stroking his head and tenderly speaking to him. She then asked Bonnie to call the mortician. Despite her emotional and physical exhaustion, she felt at peace. Reflecting on that time, she later told me: "For all the agony, it was unbelievable. There were so many good things, it was overwhelming." She had almost lost Douglas in the course of his illness, but paradoxically, in the process of his dying, he had reached out and reunited with her.
Douglas Kearney's dying, at the outset, was a very messy struggle with little hope for a gentle end. When he was referred to hospice, two people told me that it was probably useless. One cited the tumor in his brain, which was affecting his personality, the other the fact that his anger was so ingrained. There were times, before and during his psych ward hospitalization, when I doubted whether he would ever change. Admittedly, his personality had always contained anger, and his brain tumor certainly fueled his uncontrollable outbursts. The gradual loss of his precious role of father and provider surely fanned the fire. He got angrier as the disease progressed, and he felt increasingly helpless. Because of his denial and his image of himself as strong and goal-oriented, he could not bring his relationship with his children to closure. He needed sadness to say goodbye, to say how proud he was of them and how proud he was to be their dad.
All his life, anger had been his reaction to disappointment and frustration; this emotion was familiar territory to him. He had no training in sadness, no experience with it. Sadness was an absolute unknown and thus terrifying. When he was forced to confront his sadness in the psych unit, he finally took that first step off the diving board and realized, as frightening as it was, that he could enter the darkness and survive. Once he was able to cry and to acknowledge the depth of his own sadness, it lost its power. He was changed by the experience, but somehow more whole.
Personal distress or suffering of some extent is universal among people who are dying, even those who have no physical discomfort. It may range from an almost subtle loss of interest in life and a pervasive sense of uneasiness to terrifying, agonizing torment. While easy passages from life do occur, for most people the months and weeks that precede the moment of their death involve effort and inner struggle as they confront the gradual loss of their abilities, roles, and relationships and as they work to achieve some equilibrium in the face of inexorable decline.
Yet I have seen that there is a way around--or through--such suffering. Much of my thinking has been shaped not only by personal experiences but by cultural and spiritual beliefs. I do not work within a specific religious context, but I find more than a little truth in the spiritual philosophies of Christianity, Buddhism, and Judaism. In the traditional Christian world view, suffering is an inevitable component of human life. Release from suffering exists not in this world but in heaven. From a Christian perspective, the purpose of human suffering has less to do with one's own enlightenment than with alleviating the suffering of others. Buddhism holds that suffering is part of the human experience; it is nature itself, the stuff of existence. It arises from a person's attachments to the world--possessions, physical pleasures, personal accomplishments, relationships, and, ultimately, one's very identity. Only by severing these attachments can one transcend suffering and experience liberation and enlightenment. Suffering also forms a strong, recurring theme within Judaism. Judaism teaches that God chose the Jews for certain roles and responsibilities within a cosmic plan. Inevitably, some human suffering will occur and must be accepted, for the sake of others, or the community as a whole, or in congruence with God's eternal plan.
Another philosophical source of remarkable insights into personal suffering is exemplified in Victor Frankl's account of his internment in a Nazi concentration camp, Man's Search for Meaning. Frankl, a psychiatrist, maintains that physical discomfort and deprivation, no matter how extreme or brutal, do not cause suffering. The true root of suffering is loss of meaning and purpose in life, he says. Being free of physical suffering, he believes, is not enough to sustain a person, and he quotes the philosopher Friedrich Nietzsche to explain the power of meaning to triumph over physical suffering: "He who has a why to live, can bear almost any how." Pain and privation can be endured if it is for a purpose. Although each person's meaning is different, existence that is merely a burden and lacks a future with any direction or point produces the worst kind of suffering.
Douglas's sense of self was most severely assailed in his family life, especially in relation to his role as father and provider. Parts of himself were tumbling away in a frightening cascade. Everything that had given him meaning was under attack. From the moment when he awoke from his seizure in the FR, he was no longer a construction worker and a productive member of society; he no longer worked at all. Douglas also suffered mightily as his ability to function as a father and parent diminished. He was no longer the breadwinner for his family. Nor could he hunt or fish or play ball with his kids. He wasn't even able to watch them play or go to their schools. Instead he consumed the family's attention, and its money. The battering to his sense of self was severe.
In fact, as his illness progressed, his role in the family reversed, and his needs were increasingly like those of a child. Pride had always been a prominent part of Douglas's character. With illness, he became the dependent one requiring constant care, feeding, and nurturing. He hated how self-absorbed he had become, yet he felt so needy.
By ignoring, dismissing, or minimizing facets of a person's identity, doctors or family members add to a patient's suffering. This suffering will persist in someone actively dying until the integrity of the person can be restored some other way. Even with seemingly limitless, endless suffering, I have found that transformation is possible. Often, in retrospect, it is as if there had been a thin vein or membrane that divided the sufferer from relief and release. With Douglas Kearney, the curtain between his suffering from the threat of self-annihilation and his relief was thick and heavy. Yet he not only got beyond his suffering, he embraced it, and that gave him the strength to share his pain and sadness with his family. By finally allowing himself to be immersed in sadness, he moved through his suffering, emerging beyond it into the arms of his family. In so doing, he achieved a paradoxical wellness in his dying. In the end, his suffering became a catalyst for dying well. [59-84]
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