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FACING UNBEARABLE PAIN AND UNSPEAKABLE LOSSES:
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
The following story, which tells of the dying of a thirty-one-year-old mother with advanced kidney cancer, may be difficult for some people to read. While the details of anyone's demise can be hard to digest, this story is about someone wrestling with the outer limits of human endurance. Everything about Terry Matthews's dying was larger than life; nothing was small, neither her disease (renal cell carcinoma that had metastasized to her pelvis, lungs, bones, and brain), nor her pain, nor her emotions. Life, in Terry's final days, became a crescendo of agony that reverberated through her family and the community. Terry Matthews never found a transcendent peace in this life; she never "let go." Ultimately, life was forcibly taken from her. As if following Dylan Thomas's exhortation, she "did not go gently into that good night," but raged "against the dying of the light."
Terry's was not the way I would choose for a relative or loved one to die. By my personal values, Terry did not die a "good death." Yet how Terry and her family felt, not my values, is what ultimately matters. In this respect, she died well, because she died her way--fighting for life and time with her family. In her dying, she remained true to her spirit and true to her values. It was her way, thus the only way.
Terry was twenty-four years old and the mother of a toddler when she learned she had a fatal illness. She had been admitted to the hospital to have a growth on her right kidney removed, a growth her doctor had earlier assured her was benign. After the surgery, he crisply told her that kidney cancer in someone her age is very rare, adding, "It's also very difficult to cure." An oncologist subsequently told her that, even though the surgeon had removed all of the visible tumor, this type of cancer often reappears within a year. Terry and her husband, Paul, rejected his gloomy prognosis and found a more optimistic oncologist, who talked about occasional complete remissions and recommended a course of chemotherapy. When this was completed, he told the young couple they could get on with raising their family. And they did.
For a time it seemed like a miracle had occurred. After the birth of Scotty and Jenny, who was conceived shortly after Terry finished chemotherapy, they adopted a baby girl they named Sally; along with two dogs, the family was complete. They moved to Missoula to be close to Paul's family and rented a ranch-style tract house in a development that had overtaken a cornfield on the western outskirts of Missoula. Paul, a well-muscled man with a ruddy complexion and deep brown eyes, worked as an assistant operations manager for UPS, which meant he worked from late evening until mid-morning. On weekends during warmer months, the family went on picnics and outings to a cabin on Trout Lake. All year round, Terry devoted her days to her children, baking cookies, crocheting dolls, and sewing clothes and party costumes. She and, whenever possible, Paul attended every school and sporting event and volunteered to help with field trips and holiday shows. At home she organized arts and crafts projects and created toys and a steady stream of birthday and holiday gifts for grandparents, cousins, aunts, and uncles. She also made sure the children did their household chores, helped one another, and said their prayers before bed every night.
Terry often declared Friday night was "kids' night," rented their favorite video, made popcorn, and let them stay up late and sleep together on the couch. She would be there in the middle of it all, laughing and munching, giggling at the funny parts and snuggling at the end of the night. A sweet, affectionate person, Terry also had a devilish side. She could imitate Beavis and Butt-head and delighted in wisecracks and teasing with her children. She intentionally set high standards for the children, but she could also make fun of herself, slaying her family, for example, with an exaggerated impression of her own compulsive organizing.
For six years Terry was healthy and nurtured her family as lovingly as she did her bright flower garden. It was just before Thanksgiving when she developed a persistent, raspy cough and occasionally spit up streaks of blood in her phlegm. The doctor in the mall thought she had a bad chest infection and gave her an antibiotic. Christmas was now approaching, and gifts and holiday activities occupied her mind, but the hacking continued. Try as she might, she couldn't ignore it. Reluctantly, she saw Dr. Stevens, an oncologist in Missoula, and a chest X-ray was done in his office. Even though he was accustomed to giving bad news, Terry's youth and the images on the X-ray view box left him shaken. Terry noticed that he appeared upset when he was telling her what he saw. Multiple shadows in her lungs confirmed their darkest fears. After years of lying dormant, the kidney cancer had returned with a vengeance.
This time, Terry could not avoid the ominous forecast by finding another doctor. A lymph node biopsy removed any shadow of diagnostic doubt, and a three-week course of radiation therapy to her chest did not halt the progression of the disease. The cancer was moving quickly. By the middle of January it had spread to her face and sinuses, and by Presidents' Day painful spots had appeared in her shoulder and hip.
The family reacted to the reappearance of Terry's disease with anger. A casual churchgoer but deeply spiritual, Terry railed against God or blamed herself. "Why did God let us adopt Sally if he knew this was going to happen? She's going to lose two mothers! Why does God want this to happen to me?" she lamented to Jane Taylor, a hospice volunteer who had become close with her while driving her to and from additional radiation therapy. At other times, Terry felt that she herself had brought the recurrence on: maybe she should have eaten differently, or not yelled at the kids, or kept up with the naturopath's shark cartilage treatment. As the weeks and months passed, she began all sorts of remedies, including coffee enemas, seaweed potions, and herbal tonics.
Paul turned his frustration on everyone, including his wife. Some days the mood in the house was as cold and gray as the late winter sky; they barely spoke, and when they did, they argued. The family bill-payer, Terry struggled to keep their accounts up-to-date. One evening, as she sat on the living-room floor surrounded by piles of paper and two cardboard boxes, she begged Paul to pay attention and be more responsible about money and paying bills. He slammed a soda can on the kitchen table and declared, "I'll just burn them until a new batch comes in. You don't have to worry!" He stomped from the house and tore off in his van. Whenever she talked about death or what would happen "after she was gone," he accused her of giving up. At work, he itched to pick a fight with anyone who looked at him crosswise.
The children--Scotty, who was now nine, Jenny, seven, and Sally, four, reacted with ire, too. Scotty became argumentative and defiant; he hit his sisters, talked back to his parents, and even struck out at walls and furniture. He also sneered at doctors and medical people because they had not cured his mother. Jenny buried her pain and grew sullen, often avoiding Terry. Her voice, frequently a whisper, revealed her sadness and depression. Even the baby, Sally, lost her sunny cheerfulness and clung to her mom, becoming tearful if Terry was out of sight.
As Terry grew sicker, the couple's extended family rallied around. Terry's parents, Arthur and Diane, still lived in Butte, where Terry had grown up. Arthur moved into the basement and helped with chores, including cleaning and laundry. Although quiet and often at a loss as to how to help his daughter, Arthur doted on her. He spent much of the day at the kitchen table, waiting for her to call out. More than once, late at night, Terry could hear him crying himself to sleep. Her mother, who managed a beauty parlor in Butte, was less eager to come to Missoula, even on weekends. Time was not her only impediment to visiting. She had already lost one child, Cal, who had died at age six of a cerebral aneurysm, and she could not bear to watch her bubbly, energetic second child succumb to cancer. Some weekends she did not make the two-hour drive, begging off for work reasons. When Diane was at the house, she dwelled on the beauty parlor, rambling on with stories about customers and tips. She was outwardly oblivious to Terry's declining health. Terry's sister, Rebecca, who lived in Anaconda, floated in and out when her job and responsibilities in her own home allowed.
Within this large family, it was Paul's sister, Candy, who was most attuned to Terry's growing pain. As Terry became more incapacitated, relying increasingly on a cane, then a walker, Candy was there to run errands, help bathe her, and, later, help her to the bathroom. Other relatives gathered at the periphery. On the weekends the Matthews home became a hangout for aunts, cousins, and in-laws. The men gravitated to the carport or basement, where they talked in low voices or watched television. The women clustered around the kitchen and the adjoining dining room while they kept the coffee fresh, cooked, folded laundry, mended the children's clothes, or engaged in other minor household chores. It was not unusual for fifteen or more relatives and friends to be milling about the house on any given weekend evening.
Despite the obvious reason for all the company and activity, few of Terry's relatives treated her as if she were an invalid. During the winter and for most of the spring, she did not look sickly; she was youthful, still able to get around, and, most of the time, able to hide her pain from everyone except her father, Candy, and Paul. This false picture of health encouraged the atmosphere of denial that pervaded the house. While people might talk about an upcoming trip to the doctor, her medications, or some other aspect of treatment, the terminal nature of Terry's illness--the fact that she was dying--became an elephant in the living room that no one admitted seeing and no one spoke about. In avoiding what was obviously most real and mattered, Terry and her family also avoided what needed to be said and done before she passed away.
Terry fought the disease every step of the way. Since the chemotherapy had apparently contributed to her remarkable remission years before, it seemed reasonable to try again. She immediately agreed. This time, however, all it seemed to do was make her lovely thick brown hair fall out in clumps and contribute to her disgust and frustration. One morning in April, Paul arrived home after a night at work with his head completely shaved in sympathy. Terry did not laugh, as she would have in better times, or thank him for this act of solidarity. Instead she upbraided him for acting foolishly. She would not admit that her disease was getting worse. By this time, her pain was such that she could not tolerate sharing the waterbed with Paul, so she moved into Scotty's room and he shifted to the basement with his grandfather.
One morning a month later, Terry awoke determined to finish sewing the girls' Easter dresses. On attempting to get out of bed, she felt something give way on the right side of her pelvis; she collapsed in excruciating pain. Strapped to a spinal immobilization board by the ambulance crew, Terry cried out as much in distress at failing her family--yet again--as in physical pain. At the emergency room at St. Patrick's Hospital, the admitting doctor wrote in her chart: "No fractures are evident today; however, this patient obviously has very rapidly progressive renal cell carcinoma with several known foci of metastatic involvement to skeletal areas ... and attendant secondary problems with extreme pain, malnutrition, weakness, fatigue, and severe depression. Unfortunately, her prognosis with all of this is quite horrible, and therapy is only palliative." A surgeon inserted a Portacath, an intravenous line to deliver medication directly into Terry's bloodstream, and Dr. Stevens ordered high doses of Decadron, an anti-inflammatory medication, and a constant infusion of narcotic. Radiation therapy to her pelvic bone and hip was begun. Terry rapidly improved, and within three days she was discharged to continue daily radiation as an outpatient. Two weeks later, Dr. Stevens started her on interferon, a chemical therapy to shrink the tumors and slow their growth.
As the disease and the drugs undermined her once-balanced moods and flawless memory, Terry battled back. She started keeping three journals, one to organize her day, one for her medical care, and another for her thoughts. She made a daily entry in each, noting things like who was coming to visit, the times and doses of medications, and how she felt. When she began forgetting people's phone numbers, she bought a machine with memory buttons. Her children remained the focus of her life, her lifeline in the maelstrom of illness. Although I heard Terry's attitude referred to as denial, it was far more complex than that. For instance, she undertook to create a treasured final gift for each of the children. She was crocheting a big bed doll for Sally, and she was knitting afghans for Jenny and Scotty in their favorite colors. Jane Taylor helped by transcribing letters for her children to read years hence. They included memories of each of them when they were little, motherly discourses about personal values and family traditions, and touching imaginings of how she would have wanted to celebrate their graduations or weddings. Fueled by a superstitious hope that God would not let her die until she finished her children's last gifts, she never came close to completing the afghans or Sally's doll. The children gave her gifts, too. Jenny, the quiet, introspective child, wrote and gave her a story called "Feelings." Sally gave her a cuddly teddy bear she had been given at the cancer center. Scotty gave her a tiny, gift-wrapped box that contained "his love" with a note that said "If you're feeling bad, just hold this and think of me and know that I'm in your heart."
Terry was referred to hospice in late spring, when the family was going through more bad than good days. By June, she often felt too sick to leave the house and missed most of her appointments. However, she undertook another round of radiation therapy for yet another crop of painful bone metastases. On the occasional day when Terry had enough energy, she worked in the garden, bending, kneeling, and turning small spadefuls of soil despite fierce discomfort.
Even as her pain mounted, Linda Simon, her primary hospice nurse, had to negotiate with her for days before being allowed to increase her medication by the smallest possible increment. They would talk about how the new doses would make Terry feel--she hated anything that made her fuzzy or sleepy. Together they weighed the pros and cons of using frequent boluses of pain medication (a bolus is a large, single dose given when needed) versus increasing the steady drip of her analgesia. The infusion rate of her Dilaudid was set at two milligrams per hour, nearly half what it had been in the hospital, and her boluses were set at .8 milligrams up to four times per hour. Linda promised Terry, "We can go up, and if tomorrow you're not using very many boluses and you're too sleepy, we'll take it back down." Terry hated increasing the pain medication, because it meant she was getting worse, and she delighted in the few times the doses were reduced. A triumph for Terry was the time they were briefly able to drop the Dilaudid drip from 2.6 to 2.3 milligrams per hour.
Vickie Kammerer was the hospice social worker assigned to help the family. In addition to her role as a counselor, one of Vickie's main functions is that of administrative go-between for patients. She knows bureaucracies, and she helps people navigate through institutions, agencies, and the maze of private insurance and government payment systems. In an early visit with Terry, Vickie told her about the Montana health directive called Comfort One. By law, this program allows someone with a terminal illness to carry a legal release or to wear a bracelet declaring that she does not want CPR in the event of an impending or full-blown cardiac or respiratory arrest. Though Vickie knew of Terry's fierce drive to stay alive, the topic required discussion. As she had with hundreds of patients with advanced cancer, Vickie gently explained to Terry, "If you had a massive heart attack in your current condition, it might be somewhat futile even if you could be briefly revived." Terry's reaction said it all: "If they could bring me back to life and I could have one or two more days, that is what I would want."
Terry refused to be bedbound; she even hated to be alone or to sleep. Sleep was too close to death for her; the magical-thinking side of her psyche feared that if she came too close to death, it might somehow take her away. Furthermore, being in bed was a waste of time, and she had lots to do. When alone, she felt cut off from friends, family, and life, so she virtually lived in a blue crushed-velvet recliner in the corner of the living room. From here, she greeted visitors, wrote thank-you notes to people who had sent flowers or food, and supervised the children's games and chores. She and Paul still regularly skirmished over trivial issues: bills, tax forms, school clothes for the kids next fall, even whether the television should be on or off.
Through the early summer, Terry and Paul continued to live in a state of emotional defiance of what was happening to her. While they did not deny that she was dying, they felt that giving in to her symptoms and letting the illness rule them would be an acquiescence that would only hasten her demise. During a doctor's visit at which Paul was present, Dr. Stevens jolted the couple out of their superstitious suppression of the truth. Terry's Dilaudid dose had gradually inched up to four milligrams per hour roughly the equivalent of twenty milligrams per hour of injectable morphine--yet she admitted to him that she still had substantial pain in her shoulder and back, had a nearly constant headache, and felt nauseated much of the time. He was disturbed that the couple did not seem to be facing the reality in front of them. He drew Terry and Trevor a diagram, a chart with a straight line across the bottom representing the weeks ahead and a vertical line along the left edge representing her life.
Starting with an X at the middle of the left axis, he drew a diagonal line across the page toward the bottom axis, and told her, "Terry, this is your life, this is the down slope of time left. You're right here, and"--he pointed to the bottom right corner--"this is death. I don't think you have too long to live at all. Maybe two or three weeks." Three weeks took her to July 14, Paul's birthday.
Doctors usually refrain from making exact predictions about the course of an illness. For one thing, accuracy is almost impossible. Diseases and people have a way of defying odds and belying even the most knowledgeable opinion. Yet there was nothing equivocal about Dr. Stevens's drawing, and this was deliberate. He wanted to shake them up. At the very least, he wanted Terry to become more accepting of the pain medication she needed if she were to have a semblance of comfort and be able to function. His note on this meeting stated that he felt that no one in the family was sufficiently focused to give Terry the emotional and physical support she needed.
Although he called the family "dysfunctional," they were, more accurately, suffering from the turmoil of grief. From an outsider's perspective, the family appeared to be overwhelmed by the chaos of their emotions. Yet Terry, Paul, and their children were handling their tragedy the only way they knew how, with great energy and emotion--namely anger, sadness, and love.
Dr. Stevens's blunt illustration shocked the family into openly accepting that Terry would soon no longer be with them. Paul took off time from work and, for the first time, took on household duties such as learning to run the washer and dryer and paying bills. He coddled the children more, and he became more assertive in supervising and disciplining them. One morning he watched Scotty sass his mother when she asked him to get dressed and pick up his clothes, and he saw himself. It was a sobering moment, he recalled later. "I was very angry in the last few months. There were plenty of days I wanted to hurt something or someone. It was the same with him." He took Scotty out to the carport, a good place for a private conversation, and told him, "I'm angry, too. But instead of yelling at Mom or being mad at the world, we've got to find a better way of dealing with it. Let's do this together."
The couple decided to tell the children about Terry's condition, and the short time remaining to her, on a Sunday when both her parents were there. While Arthur and Diane played downstairs with the two younger children, Scotty was asked to come upstairs alone for the solemn talk. The fact that their mother still did not look very sick made the task even more difficult. Petite, with an olive complexion and huge brown eyes, Terry always, prided herself on her well-kept, attractive appearance. Her curly brown hair had begun to grow back after chemotherapy, though straighter than before, and the Decadron had plumped her up. Most days her strikingly dark features were enhanced by skillful makeup. Scotty sat on the edge of the recliner footrest, and Paul sat in a chair beside Terry, holding her hand.
"You remember last winter when we told you that your mother has cancer?" Paul began, in a story like fashion. "And that she was very sick and might not get well?" The little boy nodded gravely, and Terry picked up the narrative.
"That's why I've been going to St. Pat's every day. The doctors have been trying to make me better. But, Scotty, it hasn't been working, honey. It's getting worse, not better." She leaned hard against the door of her closeted emotions.
"Mom is probably going to die," Paul continued, while Terry collected herself.
"Positively, for sure?" their son asked.
"Yeah. Unless there's a miracle, which is probably not going to happen. Most likely, Mom is going to die," Paul answered, without faltering.
"When?" Scotty wailed.
"No one knows for sure, but it could be soon," Terry answered. For a moment, her son was incredulous, his expression disbelieving. Then it slowly melted into tears and sobs. Paul squeezed Terry's hand, and they wrapped their arms around Scotty and wondered if they had the strength to go through this with the girls.
They spoke with Jenny and Sally together. The four-year-old sat on Paul's lap and played with her dolls, outwardly oblivious to what was being said, though she was quietly listening. While Jenny was attentive when they reviewed her mom's illness and the treatments she had been getting, she interrupted them when they said that Terry was probably going to die, soon. "Don't die, Mommy," she implored. "Don't go. I need you, you're my Mommy. I don't want you to go away."
Terry cried, and held her, saying, "I don't want to, Jenny."
Other family members in the home absorbed and adjusted to the announcement of Terry's impending demise. Arthur had been devastated, but also had been a helpless spectator to her deterioration and blind to her needs. When Linda Simon had arrived one morning, Arthur, sitting at the kitchen table, had said that Terry was resting comfortably in bed. He hurt too deeply to sit with her for too long, so he was popping in and out of her bedroom. Linda found Terry in extreme discomfort because she could not get to the bathroom on her own, and her father had not heard her calls for help. "Art doesn't have a clue that Terry can't get out of bed," Linda thought. She pointedly asked him to lend a hand a couple of times, and he began to stay longer in Terry's room and to offer help.
As July 14 neared, Terry grew moodier. More than once she yelled at Paul when he was busy doing the laundry or defrosting the freezer, "You're going to regret this. After I'm gone, you're going to wish we spent more time together." Paul understood what she was going through: "She didn't want to die. She didn't want to leave me and the kids. She didn't want to leave the family. And she was unsure whether I could handle things."
In her typically organized way, Terry made funeral plans, deciding what she would wear, what the kids would wear, whether to be buried rather than cremated (she chose burial), what music was to be played, and what scriptures read. She wondered whether the funeral home would let Paul pay in monthly installments.
Terry's favorite aunt, Clarice, arrived from Alaska for a long visit. Cheerful, energetic, and loving, Clarice swept into the Matthews household like a fairy godmother. She made sure that the kids behaved and were clean, the meals were more than pizza and Coke, the house was tidy, and Terry was treated like a cherished infant. Throughout the day she checked on Terry and blanketed her with kisses and hugs. Every time Terry left for her radiation treatment, Clarice walked her to the car, perched in the window as if she could not bear to lose sight of her, and declared, "I do love you!"
Terry did not die in July, although she came close. Late in the month, her pain intensified almost to the point of total paralysis. It had crippled her right arm and shoulder and forced her into a wheelchair. Late one Friday night Linda made an evening visit to the house, and wanted to increase her medication. Once again Terry resisted, but by early Saturday morning she was in a pain crisis. Mary McCall, the nurse on call for hospice, tried to administer an extra dose of medication and became concerned when she was unable to establish flow through the Portacath, the intravenous line delivering medication directly to the superior vena cava, the largest vein in the body. The Dilaudid was switched to a subcutaneous infusion setup, and Terry quickly became more comfortable. Mary, however, asked Paul and Clarice to take her to St. Pat's emergency room for an X-ray and to see if the catheter could be unclogged. Although the ER doctor attributed Terry's increasing right shoulder pain to local invasion by a tumor, Clarice asserted herself and conveyed Mary's request. The picture showed that a five-inch section of the Portacath wire had broken off and migrated to the right atrium of the heart. As soon as the doctor saw it, he paged the cardiologist on call. Within the hour Terry was in the "cath lab," and, in a procedure similar to the angiograms and angioplasties performed many times a day at St. Pat's, the fractured segment of the catheter was extracted.
Dr. Stevens and everyone at hospice were dismayed at the event. Most of us had never heard of central venous lines breaking. It seemed that of all the families we were caring for, the Matthews did not need any iatrogenic--that is, medically caused--disasters. Surprisingly, Terry and her family took the episode in stride. She stayed overnight in the hospital and the next morning drove home with Paul.
A full house of relatives and friends awaited her. Diane and Arthur, Paul's mother, Bea, Clarice, and two cousins crowded around Terry's bed and remarked on the pretty flowers sent by Paul's boss, then fell awkwardly silent. Before anyone else could fill the gap, Diane told a complicated story about a customer who had mistakenly or deliberately (she did not know which) left a $20 tip after a $20 haircut. Clarice listened incredulously. Before Diane segued into her familiar worst-kind-of-customers anecdotes, she wedged herself in beside Terry and asked, "How are you doing, dear? Are you feeling better? Do you need anything? Are you comfortable?"
Terry looked at Clarice and smiled. "Thank God, I'm home!"
Terry was comfortable for the moment, but over the next few days, relief became an elusive goal. She was still trapped by her pain, now mostly concentrated in her left shoulder, as if she had been cornered by a wildfire. From the deepest sleep she would awake in spasms, screaming "I'm burning up, I'm on fire!" Each time this happened, she or whoever was with her would touch the bolus button on her infusion pump, administering a rescue dose of medication. Although she preferred to be in the recliner in the living room, looking out over the cornfield, she now slept in the hospital bed in Scotty's room. Some nights Paul dozed alongside her so that when her arm began to twitch and seize, he could hold it down and help contain her pain.
The house was now constantly buzzing with visitors, the men gathered around the carport and the women around the kitchen table. When Terry was awake, if she heard the kids elsewhere in the house, she would call out, "What are you kids doing? What's that noise? Are you dressed? Let's see you get dressed!" in a voice that recalled the cheerful mothering of days long since passed. She arranged with Diane, Clarice, and Bea to buy birthday and holiday gifts for times far beyond her expected survival.
By the third week in August Terry was clearly slipping, but she steadfastly refused to let go of her family life. At the end of life, most people turn away from the world toward whatever lies beyond and find a peace with that new vision. They acknowledge to themselves, "I've done my best, but I'm clearly being drawn elsewhere." With Terry, I kept wondering and waiting to see if and when that would happen. It never did. She stayed focused on living as long as possible, clinging to life. She knew the score, she knew that she was dying. But she consciously chose to live every moment until her life was ripped from her.
Terry's pain again reached crisis proportions on a Friday night. Kenneth Groth, the nurse on hospice call, paged me to report that, while Terry had been accepting increases in her Dilaudid infusion, she was approaching the limit of what was currently ordered: fifty milligrams per hour. Dr. Stevens had also ordered doses of IV Valium to calm Terry's nerves. Despite all this, Kenneth said that Terry was comfortable only for ten or fifteen minutes at a time, and at least twice an hour she would suddenly call out and grab her left shoulder. Kenneth needed new orders from Dr. Stevens, and he asked me for suggestions.
I called Jack Stevens directly. We had worked together on difficult cases over the years, and it was obvious that this one was extraordinary. We both had questions, such as what exactly was causing the extreme pain in her left shoulder. Curiously, her right shoulder had been the problem earlier. Was the new pain caused by a tumor growing into the nerves below the clavicle, a seizure due to a brain metastasis, or something else? We knew that we would never know. Clearly, Terry was going to die within a few days, and we would avoid putting her through further tests and procedures that required transporting her to and from the hospital. Unless she wants to go, let's try to keep her in her own home. There's nothing that can be done in the hospital that isn't being done at home," her doctor asserted, and I agreed.
Jack Stevens and I also agreed on a basic principle of palliative medicine. With severe pain, there is no maximum dose of pain medication; the right dose is the one that works. While the current regimen of drugs was obviously insufficient, medication still seemed the best route to pursue. We formulated a set of parameters for the nurses to follow during the night, enabling them to rapidly increase the infusion rate based on the number and size of bolus doses required to keep her truly comfortable.
From this point on, Terry's condition would require twenty-four-hour hospice nursing care as we struggled to stay on top of her searing pain. At ten P.M. Dr. Stevens made a home visit. With key family members gathered around her bed, he asked Terry, ever so gently, whether she wanted to stay at home or go to the hospital. He left no doubt that he was asking her where she preferred to die. Paul asked Dr. Stevens again if there was anything the doctors and nurses would do in the hospital that wasn't being done in the home. "I don't think so. We have, or can get, anything we need right here." Terry looked to Paul, who thought his wife looked exhausted. The T-shirt she had slept in was dark with sweat; her dark eyes were sunken into her skull. The fan on the dresser barely stirred the dead summer heat. The curtains hung limp. "It's up to you, babe. Whatever you want. I'd like you to stay here, but I'll do whatever you want." Terry closed her eyes, as if to relax, and slowly nodded her consent.
During that long night, the family suffered as much as Terry. Her intermittent shrieks--"I'm on fire! It's burning me up!"--could be heard on the street. Paul had already sent the kids across town to stay with Grandma Bea. Every time Terry yelled in pain, he thought of prisoners being tortured in foreign jails. His sister and parents, as well as Terry's sister and aunts, plus assorted cousins and hospice volunteers, were all at the house taking turns being with Terry as she squeezed their hands and grappled with the fire inside her. In her other hand she clutched the tiny, gift-wrapped box Scotty had given her.
Arthur could not stand to watch; he stood by the bedroom door and sometimes briefly caressed her foot, then left. Clarice hardly budged from the room; she crooned repeatedly, "It's going to be better soon, honey." At times, Terry cried out, "Where is my mother? I want my mother!" Arthur telephoned Diane, and she left Butte just after midnight, arriving in record time.
Hour after hour the fire raged inside Terry's ravaged body. The hospice shift changed and the new nurse, Andi Dreiling, took over. The interval between Dilaudid boluses had dropped to five or ten minutes and the doses of Valium increased to ten and then fifteen milligrams as needed every fifteen minutes. As the night dragged on, punctuated by Terry's screams and brief periods of eerie quiet, Andi and Paul continued to pump Dilaudid into her. Paul had been warned that she might overdose and, at first, he worried. But when nothing quieted her screams and moans, he found himself wishing he could put her out of her misery with a massive final injection.
By three A.M. we had depleted the supply of injectable Dilaudid from all the private pharmacies, as well as the two hospital pharmacies, in town. After a telephone call to Dr. Stevens, the Dilaudid dose was converted to an equivalent dose of morphine. The fluid volume of medication would be larger using morphine sulphate, but we could still deliver whatever dose was required. At the time of the change, this thirty-one-year-old mother was absorbing--and her pain all but ignoring--more than nine hundred milligrams of morphine per hour.
For brief moments, Terry awakened and smiled weakly. She would doze comfortably but awaken with a start every five to twelve minutes. "I'm on fire!" she would yell. Then, as the next bolus of medication was taking effect, she would whisper to Paul or Candy, "I thought I didn't have to hurt." In the moments she was awake and not in pain, she would gaze around the room and seem interested in taking part. "What's going on? Where is everybody? How are the kids?" Paul was at her side, trying to reassure her. Only when she was asleep did he rest his head on the bedrails and sob, in his own agony.
Just after daylight Saturday morning, Jack Stevens telephoned me to review the Matthews family's horrific night. "Don't you folks have a protocol for a barbiturate drip?" he asked. I responded readily. "We certainly do, and for situations just like this." I was grateful, but not surprised, that he had made the suggestion. I had begun thinking along the same lines, and his instincts confirmed mine. Push had come to shove.
The idea of sedation is controversial when caring for the dying, because some people believe that it is tantamount to euthanasia. When our hospice developed this protocol, with the help of pharmacists, nurses, and other doctors, I insisted that it be formally reviewed by the pharmacy and therapeutics committees of the medical staffs at both of Missoula's hospitals. I felt it was important that the community understand that we were committed to caring for people and would act decisively to quell the most extreme and explosive pain. Ironically, it is the very availability of such extraordinary measures that allows us to ensure that euthanasia is not required to end a person's misery. As stated earlier, I frequently promise patients, especially those with potentially excruciating illnesses, that they will not die in pain. Fast-acting sedatives, particularly barbiturates, are, literally, the bottom line of a safe, effective protocol for going beyond the normal pain relief of opioids and other analgesics, and they let me and others in hospice care fulfill that promise.
I headed for the Matthews's to explain to Paul and the family the procedure for giving Terry an intravenous barbiturate drip, an infusion of the drug thiopental, which would put her into a deep, painless sleep. As I approached the house, I could hear Terry screaming. A couple of men I recognized as cousins were standing in the carport, nervously smoking. Paul and Arthur greeted me at the door, and we huddled on the couch as I described the thiopental infusion. Clarice, Diane, and a cousin huddled in the kitchen. The family's Lutheran pastor, Bob Brownlee, hovered at the periphery, prayer book in hand. The house felt stuffy and smelled of burnt toast. The windows were closed, probably because it was a cool morning for August, or maybe to muffle noises drifting out. Neither of the men had shaved. They looked haggard, and they winced every time a noise came from Terry's room. Paul muttered something about being grateful that he had had the foresight to take the children to his mother's house.
I studied Terry's chart and the medication she had gone through. "This is a very late-game strategy, after we've tried everything else," I said. "She will go into a deep sleep and probably will not be aware of us. And, you should know, it's likely that she will not wake up from it. Unless you tell me otherwise or we decide for some reason to lighten the sedation, it is the usual course in these situations to allow people to peacefully sleep away." I paused to invite their questions.
"Will she be out of pain and comfortable?" Paul skipped to his bottom line.
"I promise you that. I'm not going to leave until I know that she is no longer in pain."
"That's what I want," Paul declared.
"I know this is a hard decision," I cautioned. "And if you want to think about it, please take as long as you need. What you have done for Terry has been incredible. I have enormous respect for the love and care you have been giving her. I think you did the right thing, taking care of her here instead of in the hospital. Too often, in hospitals, the medical aspects of things get all the attention and the personal stuff gets shoved aside. The thiopental infusion will eliminate Terry's pain and give everyone some peace. Do you want to talk to her about it?"
"Yeah. Would you come with me?"
Terry's bedroom was a shambles, with dirty dishes on the dresser and nightstand and clothes scattered across the furniture and floors. She was dozing, lying on her back with a sheet covering her. Paul lightly touched her hand, and her eyes popped open.
"Honey, Dr. Byock's here. He's going to help you."
I pulled a chair close. "Hi, Terry," I said softly. "I'm sorry you're in such misery. I think I can make it better. I can give you a sedative, a steady drip of thiopental, that will make you drowsy and then put you into what we call a `twilight sleep.' It may feel like that floating time just before you drop into a deep sleep. You may be able to hear or be partially aware of people around you, but probably you'll just be sleeping."
"But will I still wake up sometimes and be in pain?" she asked.
"No, Terry, not if you don't want to," I said.
"I just want to go to heaven," she said, with weary resignation.
As we talked, her left shoulder began to tremble and, like a ripple moving across a lake, the spasm inched down her arm and produced a strong twitch. Terry grimaced and let out a long noise--"Ooh, whee"--as if marveling at the intensity of what was coursing through her. Whenever there was a pause in her pain, Pastor Brownlee opened his prayer book and began to read; he then stopped abruptly, often in midsentence, when Terry cried out.
"Please make it stop," she begged. She squeezed Paul's hand, almost folding it in half.
"I promise," I said. I left the room to call in the medication order. The seventy minutes it took for the medicine to arrive and be set up felt like seven years. I sat with various family members by her bed and waited for the pharmacy to prepare and deliver the thiopental. While waited, I heard people arriving and greeting each other. Family and friends were coming to say goodbye. Many could not bear to stay with her for long, even Paul. At times he broke into heaving sobs and raged against God.
"Honey, please don't be angry at God. God did not do this to me,” Terry pleaded.
As we awaited the delivery of the medication, Terry was determined to use even these last few minutes of time. Clarice sat for long stretches with a note pad and pencil, jotting down Terry's last wishes, which she dictated in lucid intervals between the pain: "The stuff for Sally's doll is in the closet. You'll see how far I've gotten on the afghans; Scotty's is going to be a little bigger than Jenny's."
Terry would drop off for a few minutes, then wake up and continue. "Be sure the kids have nice clothes for the funeral. I want Sally to wear her baptism dress. And, don't forget, I want piano music, no organs."
Each time someone new came into the room, Terry whispered, "I love you so much. I don't want to leave you."
At around nine-thirty A.M. the medication arrived. I enlisted Ellen, the hospice nurse now present, and Jane Taylor to help reassure Terry and keep her arm still while I found a vein. Paul hunched over her in a hug as we worked on the other side of the bed, and they gazed into each other's eyes. Terry repeated over and over, "I'm so sorry, honey, I'm so sorry." Paul convulsed in sobs and left the room.
The sedative took just minutes to work; it visibly relaxed her. Her eyes were closed and her breathing steady and quiet. When her left arm twitched briefly, she moaned and tightened her brow. I carefully adjusted the medication upward to make sure there would be no more twitches, no more spasms of pain to jolt her awake. Her good right hand gently held the little box containing her son's love. Her breathing settled and her pulse steadied to 110 beats per minute. I stayed by her side for about half an hour, making sure no pain broke through, and I discussed further changes in the thiopental infusion rate with Ellen, instructing her to regulate the rate to prevent the visible twitching of the left shoulder that had heralded each explosion of pain.
Diane, who had been so frightened by Terry's screams, came in the room, stood beside her daughter, then sat on the side of the bed.
"Is she asleep? Is she OK?"
I nodded, and Terry's mother began to cry. As I held my open hand against her back, I realized that her sobs were not of pleading or pain, but of relief. Her daughter was finally at peace. When I was certain that we had full control of Terry's distress, I joined the family in the living room.
Like the warm Chinook winds that blow through Montana in the dead of winter, a peaceful quiet settled on the Matthews home. For the first time in days, people were talking quietly among themselves and looking relaxed. No pained glances toward the bedroom, no stricken faces, no tense bodies braced for another cry.
I touched Paul's shoulder to acknowledge his ordeal, and I hugged Clarice. "She's much better now," I reassured them. "She's sleeping. She's not in pain. I promise you, her pain is finally over."
A little later one of Paul's brothers asked, "Do people often suffer this much?"
"No. This is as hard as it gets. I don't think I have ever seen anyone endure so much pain. For what it's worth, I want you to know how much respect I have for all you have done. Families sometimes buy large headstones as monuments to their loved ones after they die. This family has built a monument to Terry in the commitment you have all shown and in the incredible care you have given, and are giving. It is truly privilege to be part of it and to know you all."
I accepted a cup of coffee and spent another half-hour or so visiting with other members of the family and satisfying myself that everything was in place. Before leaving I conferred again with Ellen and poked my head into Terry's room to watch her for a few moments to again make sure the pain was truly gone. Paul was beside her, curled up around her, and he had dropped off to sleep, probably the first sleep he had had in days.
When Paul awoke, confident now that Terry was comfortable, Clarice and Candy tidied her room and bathed and shampooed her. Diane gave her a pedicure and painted her toenails. They debated what she would want to sleep in and be seen in and opted for a fresh oversized T-shirt. Later in the day the children came home, and they said goodbye to their mother. Vickie arrived; she helped Paul, Candy, and Clarice explain things to the kids, and she stood with them as they went into their mother's room one by one. When Sally's turn came, she was not around. Vickie found her rummaging through her bedroom closet.
"Can I help you, Sally? What are you looking for, sweetie?" she asked.
Sally was busy making a pile of goodies, including a doll and a stuffed puppy. "I need these for my Mommy. This is for my Mommy," the four-year-old said plaintively.
"You know, Sally, your mom is sleeping very deeply. And she may not wake up again. She may go to heaven very soon," Vickie explained, as she had already a half-hour earlier.
"I know that," Sally affirmed matter-of-factly. `But she might need these in heaven."
Terry Matthews slept for thirty hours, while aunts, uncles, cousins, and friends spoke softly to her, caressed her, and, each in his or her own way, said goodbye. The children finally saw their mom at peace and told her that they loved her.
Paul simply sat and watched her, content that his dear wife was beyond pain. "I feel like this place was a war zone and now the all-clear has been blown," he told Vickie. Terry never regained consciousness. She died peacefully on Monday morning; her breathing became ever more faint, and finally ceased.
Terry's defiance of death defined her exit from this world. She did not "die well" in the usual sense of the term. Instead of reaching the landmarks that I would have wished for her, she chiseled out different ones for herself. Instead of experiencing a deeper love of self, she manifested a deeper love for her family. She never went through the ritual of completing her relationships with her husband and children, yet she allowed them to feel a sense of finality and resolution by allowing herself to be sedated and cared for--and enabling her family to say goodbye. Terry's personhood, her sense of herself, never wavered; she never outgrew her identity as a mother of young children. Toward the end, she realized that after she was gone, other women would mother her children and, for their sake, she accepted this. Life had to be plucked from Terry; she never did let go or turn inwardly to leave the way most dying people do. This was the crux of her life: she died with arms open and outstretched toward her family. Her reluctance to leave will always be part of her legacy to them.
As helpful as the model of landmarks and taskwork is, it is just that, a helpful guide. Terry's dying demonstrates that dying well is fundamentally about people experiencing something that has meaning and value for them. Her story also reveals how intricately entwined dying can be with a person's family attachments. In her dying, Terry served her family.
At the funeral Clarice said tearfully, "We all grew so much in this. I feel like Terry brought us all together. We're gonna take care of those children, don't you worry. And I love that boy," nodding toward Paul. "more than I have words for." She gave me a big hug and added, "Thank you so much. I don't know how you can do what you do." It is a statement I hear often. I hugged her back and wondered, with tears in my eyes, how I could do anything else.
Months after Terry died I asked Paul to think back on the choices they had made, particularly in the last few days. "Everything just seemed natural, caring for her ourselves. My love for her--I mean, I would have done anything for her, you know?"
"Has it made it hard for you to be in the home, knowing she died there?" I inquired.
"No, I'm sure glad we didn't go to the hospital that day. You know, even though we went through that horrible night, I'm sure it would've been the same thing in the hospital. We did everything they could have done--it just would have been an uncomfortable place to be for us all," he said.
"It has been strange a time or two, though," he said. "I may be crazy, but I've heard her there. The first night the kids were out of the house--I had them stay at my mom's, because I had to work Friday until midnight--I'm lying in bed, and I'm hearing all this slamming going on in the kitchen, like doors opening and closing. And I look out, and the dogs are lying there next to me, there's no one else around. And the dogs usually bark at noises. And it didn't disturb them at all. My mother stayed with us quite a bit in the month after Terry died, and the last night she stayed with us she heard stuff moving around and got spooked. But, you know, I like it. At first it startled me; now it really relaxes me to think that she was there.
"It's as if she's still trying to help me. One week I had to find the kids birth certificates and I'd put it off to the last day, and I didn’t know where those were in a million years. Then everything came to me. I opened the dresser drawer and they were sitting right there. And the social security cards, in a completely different place--again, I had no idea."
"How are the kids doing, Paul?" I asked.
"They're doing OK. They've been part of the kids' group at hospice with Vickie and Monica, and I think that's helped a lot. They have hard times, of course. When Sally is tired and frustrated, she says she hates us all and wants to go live with Mommy. But I hold her, and we take each day at a time, and together we get through it."
"How are the rest of your and Terry's family? Do you see them much these days?" I continued.
"You know, I'm really closer with the family now, even my family, including my brothers. We've always been fairly close, but it seems like we're closer now. We do things together more often, I think. And everyone's always checking up oil me, making sure I'm OK. The kids are getting lots of love; so am I"
When a person is dying, pain is never purely physical. Pain that goes on day after day without relief understandably generates fear, anxiety, sleeplessness, and irritability. Also understandably, this emotional distress feeds back on the pain and heightens one's misery. It is a tenet of palliative care and hospice that the nature of pain is subjective; pain is what the patient says it is. While accepting that anyone's distress will always have physical and emotional components--and often social and spiritual elements--I believe that a patient's pain is not better until she says it is.
The cancer that invaded Terry's body caused physical agony that became impervious to the usual pain medications, even megadoses of morphine. Yet, while the physical aspects of her distress were enormous, I have no doubt that Terry's blinding grief at the thought of losing her husband and three young children contributed to her pain. She refused to adjust to her illness. Instead, she chose to claw at every possible route to survival, to defy death by seeking every life-prolonging option, and for this she paid the price of extreme physical distress. She clung to life far beyond the point at which most people surrender to the inevitable. Her connection to her family, being with them, was more important than the pain--and her resistance to letting go gave the disease more time to inflict its cruel torment. By the end of her life, Terry's pain was as bad as it gets, as severe as I have ever witnessed.
Medicine, especially the emerging discipline of palliative care, has devised a wide array of medications and techniques to alleviate even the most profound and persistent pain. Mercifully, situations of such extreme physical misery are rare. The constellation of factors that conspire to cause pain as severe as Terry's is highly unusual. Think of it as winning the lottery from hell. For instance, had the site of Terry's pain merely been in the lower part of her body, rather than at the base of her neck and shoulder, spinal nerve blocks could have been used to provide relief with relative ease.
For the person who is suffering, of course, it doesn't matter at all that the severity of their pain is unusual. The existence of physical agony becomes the overwhelming truth. At this extreme of physical suffering, pain seems uncontrollable.
Eighteen years of clinical hospice experience has taught me, however, that physical distress among the dying can always be alleviated. The word "always" in this context may sound facile, but I use it deliberately. Medical care for the dying stops working only when we give up. Pain is only "uncontrollable" until it is controlled. Pain and other physical symptoms caused by advanced disease usually yield to relatively simple treatment. This is not to say that symptom management is routinely easy. Effective therapy may require the efforts of a physician skilled in palliative medicine and a team of hospice-trained nurses, consultant pharmacists, and others. As Terry's story shows, sometimes pain is so severe and so resistant to customary medicines and therapies that a patient is forced to accept sedation as the cost of comfort.
However, as Terry's story also shows, comfort is always possible. Although--as in the case of Michael Merseal--it is considered from time to time, over the past ten years, as I have helped care for hundreds of hospice patients in Missoula, I have needed to resort to full sedation utilizing an infusion of barbiturate only once. Terry's pain typifies the sort of nightmare that motivated our program years ago to develop a clinical protocol for barbiturate use.
The story of Terry and her family explores the fine line between sedation for the treatment of extreme terminal pain and euthanasia. Life beyond the ability to respond in a meaningful way, and the care it demands, can both be burdensome. People unfamiliar with the purposes of palliative care may see little difference between sedation to control persistent physical distress and euthanasia. What may appear philosophically to be a fine line is, in practice, a chasm. [193-216]
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