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My Journey on Dying Well by Dr Ira Byock
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
I was the first person to know that my father was dying.
I realized it during a phone call eighteen months before he would die. I was living in California and in the midst of residency training required to practice rural family medicine. It was a warm winter evening; my wife, Anita, and I had just finished dinner and were preparing to snuggle in bed while watching Lou Grant, our favorite television show.
"Hello, Ira, it's Mom and Dad," came my mother's gravelly, unmistakable voice. "How're things in Fresno? How's Anita?"
"Fine, Mom, we're all fine. I'm as busy as ever. Anita's great. We've got lemons and oranges on our trees in the middle of winter! Hi, Dad, are you on the phone?"
It was almost eleven P.M. in New Jersey. I could picture my mother in the tiny office of their split-level home and my dad upstairs in the den, finally winding down from a day that probably started at six A.M. Anita picked up the kitchen phone; the four of us were now on the line.
"How are you, Sy?" I used my dad's first name intentionally, to speak as adults and let him know I wanted a genuine response. Often, while the rest of us chatted, he would get off the phone after just a few minutes.
"Oh, we're fine, I'm fine," he said, and then continued, "Actually, I have a question. What would make you itch?"
"I don't know, Dad. Where are you itching?" "All over, I guess."
"More on your arms or legs or back?"
"Do you have hives or any kind of a rash?"
"Do you feel OK otherwise? I mean, do you have a sore throat or a fever or a cold or headache?"
"Uh-uh. I feel fine."
"How long has this been going on?" My father was hardly a complainer. I had seen him smash his thumb while moving a three-hundred-pound vending machine and not break into a sweat.
"Oh, four or five days, I guess."
"Are you itching a lot, Dad?"
"Yeah, a lot." Now I was getting puzzled and a bit worried. A side-effect of medical training is that you begin to imagine the worst when you or your family have any symptoms. I pictured the branching diagnostic diagram for pruritus, that is, itching.
"By any chance are you turning yellow, Dad? Are your eyes maybe a little yellow?"
"Uh, Seymour," my mother said.
I realized that she had not been competing for phone time. "I think they may be a little yellow."
"Really? Why haven't you told me?" he asked her. "Is your urine dark, Dad?" I continued.
"Yeah, it is."
My heart sank. "And your stool has become lighter, sort of clay-colored?"
"Yeah, it's light; it's not right. How did you know that?" Thinking back on the sound of his voice, I imagine he was impressed at how astutely his son, the doctor, was zeroing in on the problem.
My mind was reeling. I leaned against the dresser in our bedroom, the phone to my ear, my forehead in my hand. He was dying.
He had told me enough for me to label his condition: painless jaundice. Jaundice is a discoloration of the skin that occurs when bilirubin, a breakdown product of red blood cells, is blocked from draining into the duodenum, backs up into the bloodstream, and gradually leaches into the skin. It makes a person yellow and itch. Not very specific, but enough to bring a familiar list of causes to mind. At the top of the list is cancer of the pancreas, and I was familiar with its diagnosis and typical course. When it begins to cause symptoms, it is predictably untreatable and uniformly fatal. Although other things can give rise to painless jaundice--tumors of the bile duct, gallbladder, and stomach, and an enigmatic condition known as primary biliary sclerosis--most of these are also lethal.
Occasionally, someone with painless jaundice will simply have scarring from peptic ulcers or obstruction from a gallstone, both of which are easily cured by surgery. It was possible, but the odds were not good. More honestly, at the time I knew it in my gut. Dad was dying.
My father was a remarkable, complex man, a study in contrasts. Born in 1918, he was the son of first-generation Jewish immigrants and grew up on the streets of Newark, New Jersey, during the twenties and thirties. Life was hard when Seymour was a boy, and it got a lot harder during the depression. My grandparents owned a small corner candy store that sold newspapers, magazines, cigarettes, and cigars and had a lunch counter and soda fountain. Mike Byock, my dad's father, also worked nights in the pressroom of the Newark Evening News. The family struggled to scrape by, and Sy's education took a back seat to getting the work of the store and the household done each day.
In the 1950s, when I was growing up in the New Jersey seashore suburbs, my father's motto was "It's nice to be nice." He was opinionated and could be stubborn, but his humor and kindness were what stood out. Morality and fairness were not just spouted for the sake of me and my sister. He went out of his way to help others. He was a mensch in the truest sense, instinctively and sincerely doing the right thing.
Our family owned a small cigarette wholesale and vending business that Sy had built from scratch. It was a modest operation, but it consumed endless hours of his time. As a boy I watched Dad glide comfortably through the bars, gas stations, and racetrack stables whose vending machines we routinely serviced. These were men's places, which could be crude and intimidating for an adolescent boy, but in physical stature and demeanor he was at home there. Yet he never went to bars, rarely drank, and abruptly quit smoking after the publicity about its ill effects began to build. Baking was his main passion and overeating his only vice.
Dad's other passion was people. Weekdays in the summer, while we rode between stops on the vending route, in an oversized step van with "S. Byock, Wholesale Cigarettes, Cigars and Vending Machines" stenciled on each side, he discoursed about the various characters who peopled his world. Tavern owners, public figures, relatives, shadowy friends from his past, guys he knew from the war: They were all grist for the mill. Dad was an astute observer of psychology and moral fiber; little escaped his attention, and his crisp assessments did not permit shades of gray. He was a man of principle who did not suffer fools kindly. Woe to him who wronged Seymour Byock or who was proven bereft of virtue. Sy chose mostly to avoid people he didn't like or respect, but their transgressions became teaching material for my ongoing moral education.
It would be wrong to give the impression that he was preoccupied with passing judgment on those around him. His preoccupation was business: taking orders, getting paid, making sure that the goods were delivered on time and the vending machines were functioning. Customers and suppliers knew Sy as honest, reliable, fair, and friendly. Family and friends who knew him well remarked on how much Sy liked people or, more accurately, how much he enjoyed people.
He especially enjoyed children. At various family gatherings Dad was a magnet for kids. With the infants he'd play "So, Big!" making eye contact and crooning until they smiled. With the older children he played games and little magic tricks, most notably "Acka Mazzacka!"
I had mixed feelings about this game, for it required an accomplice, which was usually me, and it became a nuisance before long. Prior to any family party Dad would grab a handful of pennies. My instructions were to discreetly slip a penny beneath lamps, ashtrays, or candy dishes on arrival at our relative's home. After the first few times we did this--and there were many--I didn't have to tell him where I had stashed them. At each family celebration, it wouldn't be long before a swarm of children formed--from as young as three to as old as twelve--all demanding to play "Acka Mazzacka!" Dad would show them a penny and make them blow on it or rub it. He would then slowly intone "Aaaa, kaaa, maaa, zaaa, kaaa," palm the penny, and point to the object beneath which it had been telekinetically projected. Squeals of amazement and delight greeted the discovery of the transported coin, followed inevitably by loud calls to "Do it again, Seymour. Do it again!"
My father was a handsome man in his youth, but World War II and years of worrying about the business and how, with only an eighth-grade education, he could support his wife and two children took a visible toll. My earliest images are of him mostly bald with deep furrows in his brow and a certain seriousness or reserve in his expression. Physically, Sy was distinguished by his big nose, which was easily the size of Jimmy Durante's, but what I remember most about his face were his eyes. The only expression he tried to hide was worry, although over the years I began to recognize a certain wounded darkness in his eyes. Despite the undercurrent of worry, which was usually over money, and tides of regret over his lack of education, Sy never lost his capacity for joy. When I was a young boy, my dad's smile was better than a new toy; his eyes became so warm and engaging that he was irresistible. No wonder the children loved him.
It seemed incomprehensible that all this could be lost. Before I hung up the phone, I insisted that my father see Stuart, his internist and a distant cousin, the next day. Two days later he had an ultrasound examination of his liver and gallbladder and a subsequent CT scan, which found a mass at the head of the pancreas. The next day he underwent exploratory surgery, during which the surgeon created alternate routes for food and digestive juices around the increasingly constricted intersection of the duodenum, pancreas, and biliary tree and took multiple needle biopsies from the mass.
Examination of both the immediate frozen sections and, four days later, the permanent microscopic specimens showed only inflammation; no cancer cells were found. Mom, Dad, and my sister, Molly, were all delighted and very encouraged. His doctors were evasive. I was furious, especially at Stuart. He knew exactly what was going on but was avoiding leveling with my father. Cancer of the pancreas often incites inflammation around itself as the blocked enzymes try to digest the glandular tissue that produced them. It's fairly common in these situations for biopsy specimens to be negative or inconclusive. My father deserved to know that his time was limited; instead, Stuart dangled a vague, faint hope and deflected questions by directing attention to postoperative issues. He said things like "You're going to get stronger and be back to feeling yourself before long."
Stuart's love for my dad, his favorite cousin, and my dad's trust in him, limited my ability to intervene. If I had it to do over again, I would press hard to change doctors then and there. Looking back, I think that Stuart should have been relieved of his responsibility for my dad's medical care and relegated to a supporting role as a member of our extended family. As things unfolded, the problem proved to be continuing.
After the surgery Dad indeed recovered rapidly, and within two weeks he was back at work. When I inquired about their plans for the future, Mom and Dad said that they were just going to wait and see. They made no plans to sell the business or to vacation and held no real discussions of end-of-life issues. My attempts to raise serious subjects were unwelcome, an assault on hope. So I kept my concerns to myself, and I was alone with the truth and my grief.
Naturally, the miles between us and my intense work schedule contributed to my isolation. I spoke by phone with Molly, who lived in New York City, and tried to express my concerns. She, too, needed to believe there was a chance that Dad would get well. Most of the time I was so busy that it was easy not to think about what was happening in New Jersey. The phone reports were all good--no signs of problems. Six weeks after Dad's surgery, Molly, Anita, and I surprised Mom and Dad by meeting them as they were walking into a Broadway show. We had given them the tickets as a Hanukkah present. During dinner after the show, their pleasure with our visit turned into jubilation when we told them Anita was pregnant. Their first grandchild would arrive in June.
Dad looked well--a little thinner from the surgery, but strong. He was eating well, had no complaints of pain, and seemed to have as much energy as ever. It was a happy time, and it seemed right to let it be. The only gloomy remark that week came from Dad, while he and I were driving to a bus depot to fix a jammed cigarette machine. He said, "I hope I'm around to see that kid of yours grow up."
"I hope you are, too, Dad. I really hope you are, too."
My father and I had become good friends. We usually spoke intimately while doing something or going somewhere, usually in a car, sitting shoulder to shoulder, facing ahead. This habit came from years of working together like this, after school, on weekends, and most summers. The transition from boy-and-his-Dad to father-son friendship had not been smooth. During my high-school years, the Vietnam War had been fought every night on a small screen in our kitchen and at our dinner table.
My father was a lifelong Democrat who simply could not believe that Lyndon Johnson and Robert McNamara could be wrong. "What about the Gulf of Tonkin?" he'd yell. I would yell back, "We need to make peace, not war!"
As a freshman in college in 1970 with the draft lottery number of 13, I studied Selective Service regulations, prepared my conscientious objector claim, and memorized maps of Canada. Dad hated war and lost no love for the military, but, as a veteran of World War II, he also hated draft dodgers. "This will follow you forever!" he'd exclaim. "You're ruining your life." Ultimately, it was my appearance, not my politics, that confirmed my moral degeneration in his eyes.
When I came home for spring break that year, my hair had passed my ears en route to my shoulders. My allowing my curls to grow was proof to Seymour that his son had been lost to drugs and rock-and-roll. For two years Dad and I rarely spoke and carefully avoided confrontation. My admission to medical school eased tensions; once again, he spoke with me rather than at me.
During vacations in medical school I still occasionally ran the business for a week to allow my parents to get away on vacation. I would hear from the customers how proud my dad was of me. "Really?" I'd say. "What makes you think so?"
"Oh, yes, he talks about you all the time!" And they would recount recent events in my life; passing some big exam or getting engaged. At first I was amazed; Dad never told me he was proud or seemed even to remember any of the details of my life. This was his way. Part of it, I am now certain, was knowing that his customers would tell me.
As father and son our wounds healed, and a new phase in our relationship began in April 1978 when I married Anita. As long as he lived, Dad spoke of our wedding day as "one of the happiest days of my life." His son was a doctor. He had a daughter-in-law whom he loved, and who loved him, and the promise of grandchildren. His dream, which had been his parents' dream and, before them, the dream of his immigrant grandparents, had been fulfilled. These were the best of times. But to me, those times now seemed long ago and brief.
In May, four months after his surgery, Dad began having a deep ache in the pit of his gut that the Darvon he had been given after surgery did not touch. A repeat CT scan showed that the pancreatic mass was much larger and metastatic nodules of tumor were in the liver. The diagnosis was now confirmed. While I was saddened by the test results, I was, I admitted to myself, relieved that the secret of his illness could now be shared. An oncologist encouraged Dad to take mild chemotherapy once weekly and referred him for radiation therapy "to slow the growth of the lesion." I managed a week off and flew to New Jersey.
Each morning I drove my dad to the cancer center and back. We usually took local roads made familiar by years of vending routes, slipping through the neighborhoods of Ocean Township, Eatontown, Little Silver, and Red Bank to avoid traffic and break the monotony. He began talking seriously about selling the business. During the two and a half hours or so our daily outing consumed, he also told me what it was like to be dying, as, years earlier, he had taught me about life and about right and wrong.
Twenty minutes into our wait at the cancer center one morning, as Dad sat resting with his eyes closed and I flipped through a magazine, he said, "They give you only six months to live, and then, little by little, they take it back from you."
Another lesson came on the way home from the cancer center when I suggested that we stop and have coffee with some friends who owned a luncheonette on the boardwalk in Long Branch. To my surprise, he declined.
"I don't want them to see me like this."
"Like what, Dad?"
"Well, like this. I don't look so good. I look sick, and I think I smell bad, sick-like, too."
"Dad, are you embarrassed by being ill?"
From the passenger's seat he turned his head to look at me. "Yeah, it's embarrassing. And it makes other people uncomfortable."
I kept my eyes on the road, blinked back tears, and tightened my jaw, hoping he wouldn't see. Here I was with the man whose very being defined pride for me. Pride was being at my father's side, pride was being seen with him in public; my personal pride arose from my father's approval of my accomplishments. It took a moment to make sure my throat was clear before speaking, "I don't think you should feel embarrassed about being sick. I'm still really proud you're my Dad."
Lila was born in June 1980, and three weeks later we flew to New Jersey. In spite of the radiation treatments and chemotherapy, Dad's health was continuing to deteriorate. He was losing weight and becoming weak. His strong tenor voice had become raspy and strained. I suspected that the tumor was robbing him of energy and appetite, something all cancers can do but for which pancreatic cancer is infamous. As we visited and celebrated the new life among us, I noticed that Dad's appetite was not that bad. My own evening forays to the kitchen uncovered another cause for his weight loss.
Dad had always been heavy, and he had been diagnosed years earlier as a borderline diabetic. He also had high cholesterol and a strong family history of heart disease, and thus, under doctor's orders, had long since given up eating eggs and red meat. When radiation therapy was started to his pancreas, the source of the body's insulin, Dad had been given special testing strips and told to check his urine for sugar. These "dipsticks" on occasion began to show that he was "spilling sugar" in his urine, so Mom had tightened up on his dietary habits, feeding him dietetic this and nonfat that. Seymour Byock, for whom eating was a central joy in life, had been sentenced to culinary confinement.
Dad and I began stopping for lunch on the way home from the cancer center. It was our guilty secret, but he enjoyed the hot dogs and pastries. Remarkably, his famous appetite had not yet succumbed to the cancer. For a few days I bought real ice cream and whole milk under the guise of wanting them for myself. While Mom understood why he should be allowed to eat anything he wanted, my arguments never quite swayed her. Medical degree or not, I was her son; it would require a call from the doctor for her to change.
I hid not spoken with Stuart since the earlier trip home, when I had spent a few unsatisfactory minutes with him and had asked him in earnest, “Don't you think you should level with my father and let him know that we strongly suspect he has cancer and a limited time to live?”
He had answered, with quick condescension and a lecturing tone, "With a few years of practice, Ira, you'll understand that a doctor must not destroy hope. I know what I'm doing." I was too stunned, appalled, and exasperated to reply, but I immediately understood the arrogance of a doctor's paternalism. Hope? Hope for what--to live forever?! What about truth? What about respect for a person's right to make choices in his life? Who elected him to make critical decisions for my father that had nothing to do with medicine!?
Now I called Stuart at his office.
"Stuart, I came home thinking that the twenty-five pounds Dad has lost since spring was due to tumor anorexia. It turns out that he is literally starving to death because Mom is fixated on his diabetic and cardiac diet. She's certain that if she allows him to spill sugar in his urine, she will kill him. As a result, almost nothing he is eating has any real food value.
"I have been trying to convince her to change, but she needs to hear it from you. He should be eating any damn thing he wants, including ice cream and eggs and steaks, as long as he's able to digest them. If he needs insulin, and he probably will, then we'll deal with that." I spoke slowly and deliberately, explaining the events and the plan for care as I would to an intern under my supervision. I let hang the unspoken question: "How could you have allowed this to happen?"
"I'll call her tonight," he replied contritely.
Once he was fed, despite his cancer, Sy gained weight and regained a bit of his strength and sense of humor. His voice was less hoarse. Within a month of liberalizing his diet he did require insulin to keep his blood glucose in the nearly normal range. This was easily managed, with a single notable exception.
One evening in late September, now back in California, I was on call, writing orders at a patient's bedside in the ICU (intensive care unit), when the hospital operator paged me and told me to call home. Anita told me that Mom and Molly had just called from New Jersey and were very worried that Dad was acting strangely. I called them immediately. "He's become confused within the past half-hour or so," said Molly. "We called Stuart at home, and he said it was probably a tumor in his liver causing problems, and he wants us to come by first thing in the morning for a blood test. Is there anything we can do tonight?"
"Is he in pain?"
"No, I don't think so, Ira. He's here with me and looks comfortable, but he's not making sense," my sister replied.
"Mom, is one side of him weak? Is he shuffling one leg or not moving one of his arms?"
"How about his face, is it symmetrical or is one side sort of flat?"
"No, I think it's all normal."
"Is he sweating?"
"Yeah, Ira, he is."
"Put Dad on the phone, Molly."
All I could make out from Dad was "Hello." Everything else was gibberish.
"I think he's having an insulin reaction. I want you to get three or four teaspoons of sugar into him as soon as possible. Right now. He can have orange juice, too. If he's not better in ten minutes, call an ambulance. Is that clear? Got it?"
I called back in twenty minutes. "Oh, Ira, he's better, thank God!" my mother said.
Hearing my name, my father picked up the phone. "What the hell was that about?! That's the strangest thing that ever happened to me."
"An insulin reaction, Dad. Your blood sugar got too low. Remember the nurse told you about that when she was teaching you to give yourself the shots? It's not dangerous, as long as it's treated."
The immediate crisis was over, but I was not relieved. As I thought about what might have happened had I not been a doctor, I shuddered. I struggled to speak calmly. "Tomorrow morning, keep the appointment, but I want you to see Joel Shapiro." Joel Shapiro was a gastroenterologist and one of Stuart's partners. "I really want him to be your doctor. OK?"
"OK, Ira. Thank God you were there."
"Yes, Mom, thank God I was here."
"We love you," they said in chorus.
"I love you, too." I hung up. Now, I was sweating. I called Anita; as I told her the story, I began to cry.
In the early winter, a year after his surgery, Dad began again losing weight and becoming weaker. Although we put him on supplements like Ensure and gave him vitamins and pancreatic enzymes to swallow, no dietary trick would work this time. He had already lived months beyond the norm for pancreatic carcinoma. He accepted that time was limited, but he wanted to make the best use of what remained. The business had been sold, fiscal affairs were in order, and visiting family and friends had become the highest priority. A trip to Fresno was hastily planned to coincide with his birthday.
Anita and I met my parents' plane late in the evening. As we greeted each other and walked toward the baggage claim area, I thought that Dad looked yellow. "Maybe he's just sallow," I thought to myself. "Maybe it's just the fluorescent lights." The next morning I knew he was jaundiced.
"Dad, you're yellow again," I said, as we were sitting down to have coffee.
"I am? Again?" he looked bewildered.
"What did Dr. Shapiro say when you saw him the other day?"
"He had an emergency at the hospital, so I didn't see him. They just drew my blood at the office, and we're supposed to call in a few days."
I was glad he had not seen the doctor, because he would never have let Dad make the trip. Now that he was here, I could take care of him in my medical universe. This, at least, was comforting. As a senior resident, I was convinced that our dingy, under-funded, overcrowded hospital gave the best medical care in the world. While other centers might have famous names and reputations, I knew the faculty who constituted Valley Medical Center (VMC). Together we had walked, time and again, into the chaos of blood, agony, or despair, and together, time and again, we had brought order: cure, or at least comfort. I would have trusted them with my life; now I trusted them with my Dad's. Before noon Dad and I were at the VMC lab having his blood drawn for a blood count and chemical panel. While we waited for the lab results, I gave him a nickel tour of the hospital and ducked in to talk with one of the faculty attending physicians who was an expert in interventional radiology. I explained my father's case and we discussed the need for an ultrasound study to look at his liver. The blood test results came back within an hour. His serum bilirubin was elevated, consistent with his jaundiced appearance, and the liver enzymes were elevated in a pattern that suggested obstruction of bile drainage with secondary hepatic cellular inflammation. All, unfortunately, as expected. The ultrasound examination revealed that the obstruction of bile was within the liver and from a metastatic tumor. This news was particularly bad, because it meant the obstruction could not be treated by placing a plastic channel, or stent, through the obstructed bile ducts.
By four o'clock we were home, relating the news to Mom and Anita.
"Well, what are they going to do?" The tone of Mom's voice echoed with questions and unspoken demands: He was doing so well, how could this have happened? He had the surgery to keep from being obstructed. What did we do wrong? We were so careful, and we've been hurrying to make this trip; this can't be the end. We're not ready. It's not fair! There must be something that can be done!
I listened to what remained unsaid. My heart ached as my mind raced to formulate an adequate response.
Anita came to my rescue. "Who have you talked to at the hospital? Who are you going to have him see?"
"I've already spoken with Marcel Lagrange, the radiologist, and we talked with him about our options. We think that probably the best next step is to place a catheter into the largest collection of bile within the liver." Under ultrasound guidance and with a local anesthetic, a needle would be inserted below the right ribs into the liver and a catheter threaded into the largest "lake" of bile, allowing it and its tributaries to drain into a removable bag attached to the skin. It could all be done as an outpatient procedure; if all went well, Dad would be home in a matter of hours.
"Dr. Lagrange can do it tomorrow afternoon. And tonight I plan on talking to Dr. Bellows." I looked at my parents. "He's a really good Oncologist. I also want to talk to Dr. Catellano, one of my teachers who is a gastroenterologist, and get both their ideas. And before it gets too late tonight, I'll call Joel Shapiro back home, let him know what's going on, and see what he thinks."
"Oh, OK." Mom sounded relieved; at least there was a plan. But I noticed how tired she looked. The illness was my father's, but the ordeal was hers as well. I thought that as emotionally hard as the current crisis was for me, it was relatively easy for me, being inside the medical system. I could only imagine how scary and overwhelming it must be for them, dealing with the various problems and crises in New Jersey.
"Dad, do you understand what I’ve been talking about? Do you have other questions about the procedure, or other things I can answer, or that I should ask the other doctors?"
"No." It was classic Sy. He knew the score, the problem was straightforward, and we had a game plan. It wasn't pretty and it wasn't fun, but it had to be done.
Complaining was not Sy's style. He didn't even complain the next day during the "percutaneous, transhepatic, biliary pigtail catheter placement," although it ended up taking twice as long as expected and was much harder on him than I had hoped. I knew he was in pain because he wasn't kibitzing with the young radiology technicians who were helping Dr. Lagrange, and there were beads of sweat on his forehead. We started an IV, and I gave him a small amount of morphine, which helped a lot. At the end of the procedure the bile was drained but so was Dad--utterly exhausted from the pain and woozy and queasy from the medicine. We decided that he should be admitted for IV fluids and observation, and I asked Gerritt Smith to be his doctor.
I had my pick of admitting teams and I chose Gerritt, not because of our friendship or his irreverent sense of humor, though I considered both to be assets. Even as a resident, Gerritt was the sort of physician who is sometimes referred to as a doctor’s doctor; confident in his knowledge and his craft, he also had a heart and was not ashamed to show it. Dad liked him immediately. I was present while Gerritt took a history and reiterated the plan for Dad to hear. I used the opportunity to discuss Dad's preferences regarding cardiopulmonary resuscitation (CPR). If a patient was in the hospital and had a heart attack, ten people would respond with tubes and chest compressions and electrical shocks to his chest, unless a doctor wrote a "do not resuscitate" order. Dad and I had once before talked about these things, but it had seemed theoretical. Even now it was just a precaution, part of complete planning. As tired and weak as he was, Dad's response to the question of whether he would want CPR was characteristically terse: "Shit, no. If I die, just bury me."
In the early evening Mom, Anita, and Lila came to the hospital to visit. Dad was already feeling better and had been able to eat a little dinner. He was even able to muster enough strength to hold his grandchild for a few minutes. We left at about nine P.M., anticipating that he would be discharged in the middle of the next day.
The next morning Gerritt met me as I walked onto the ward. His somber expression told me something was wrong.
"Ira, your father had a rough night. About one-thirty he spiked a fever and had chills, and about fifteen minutes later dropped his pressure. There were a few minutes when things looked real shaky, but he pulled out of it."
"What happened? Why wasn't I called?!" I looked at Gerritt with annoyance.
"They called me, and I came right in. We cultured him up and I put in a central line. If he hadn't stabilized quickly, I would have called you." As he spoke and I noticed the tiredness in his eyes, I understood. Gerritt was Sy's doctor, and he was doing his job. Part of his job was to allow me to be family here, son to my dad.
"Thanks, Gerritt. Thanks a lot."
As I walked into Dad's room I was struck by how small he looked. Above him an oscilloscope traced the electrical activity of his heart, and chrome IV poles framed the head of his bed. The IV in his left arm was attached to a bottle of saline, and a plastic bag of antibiotic solution was piggy-backed into the tubing at his wrist. Another IV, this one a large-bore catheter that entered the subclavian vein just below the midportion of his right collarbone, was attached to a three-way stopcock valve. Through it saline was flowing at a to-keep-open rate; also attached to the stopcock was a manometer that provided measurement of central venous pressure, a guide to his volume status. The third channel led to a dopamine drip with its own infusion pump that was standing by, just in case that medication was needed to raise his blood pressure. Oxygen tubing ran from his nose. A call button was pinned to his pillow. A urine bottle hung at his bedrail. On his bedside table was a cafeteria tray with his untouched breakfast, a pitcher of water, and a menu of the next day's meals.
"Hi, Dad:" I managed a simper. "How are you doing?"
"Oh ... it was ... a lousy night." He whispered, not from breathlessness but from sheer lack of energy. His pallid complexion held little more color than the sheets on his bed.
My father was dying. I had become almost accustomed to saying the phrase in conversations with close friends, but now I knew it in a new way. Dad was dying; actively, perhaps imminently.
As if to reassure me that he is not dead yet, Dad opened his eyes and whispered, "You know what? That son-of-a-bitch ... friend of yours ... Gerritt ... told me jokes ... the whole time ... he was torturing me." He closed his eyes with a wan smile.
I leaned over and kissed his forehead. "I love you, Dad. Get some rest, and I'll be back a little later." As I was leaving, I reached under the sheets and tickled the sole of his foot. "And Sy, no more shenanigans, OK?"
Mom was shaken by the news of Dad's near demise and, at the hospital an hour later, by his appearance. But together she, Anita, and I regrouped. The samples of blood and bile tested grew a coliform bacteria that was sensitive to two of the antibiotics, so after forty-eight hours without a fever he was changed to oral medications, and the next morning we took him home.
He slept the rest of that day but, with some coaxing, was able to sit with us during dinner. He took only sips of juice and chicken broth and spoke very little, as if conserving his strength. Lila was asleep in her Sears wind-up swing, rocking and clicking beside our dining room table. After quietly looking at the baby, Anita, and me, he spoke. His voice was strained, but his determination was clear. "I want to give you a gift. I want you to go out and buy one of those video recorders and cameras. I want her to know who I was."
"Oh, Dad. We'll do it if you want, but I promise you she'll know who you are."
Anita rose and put her arms around him. "I love you, Dad. I promise, too, our daughter will know who you are." She began to cry as she hugged him.
"I love you, too, honey." He patted her arm and recited one of his famous Syisms: "Don't worry, it'll all come out in the wash." This stain, of course, would not come out; his absence would indelibly color our lives.
Despite Anita's training as a physician's assistant and my own expertise, caring for my father was not easy. Yet it did seem natural. If we had had less clinical experience, I'm certain we would have hired visiting nurses or brought in hospice. As it happened, Esperanza, the hospice affiliated with VMC and which I had cofounded, was still rudimentary and offered little we could not do for ourselves.
As I look back it seems ironic, yet fitting, that what I really needed to know about care of the dying I learned not in medical school or my residency training but from the care my parents had given to Leah, my maternal grandmother. I was eight years old when Gramma Leah had her stroke. She nearly died abruptly, but over the first few days she stabilized and slowly improved enough to be discharged to Kessler Institute, a state-of-the-art rehabilitation hospital in northern New Jersey. Months and months of therapy left Nano, as Molly and I called her, able to barely communicate and to minimally assist with her own feeding and toileting. Money and insurance coverage were gone. Nursing home placement was advised, but it was out of the question; my parents took her home. Nano lived with us for the next year. Mom shouldered the heaviest load, but our entire family took part in her care. A nurse and a physical therapist visited weekly and taught us what to do. While my Mom's care for her mother might have been taken for granted, I was struck, even as a boy, by my father's unabashed tenderness toward Leah.
With our love and care, Nano steadily improved and eventually returned home with my grandfather, Harry. With help she could manage her own household. We made the hour's drive north every weekend to visit, take her shopping, and do chores around the house. Twice a month for the next twenty years my Dad also did another thing she could not do for herself. With a stainless-steel basin and special clippers reserved for the task, a ritual developed: she soaked her feet in soapy water, and then while he bantered, relayed gossip, and told her fibs and bawdy stories, he cut her toenails. This ritual continued well after Dad had himself become ill, until die died in September 1980.
Actually, Dad required little care when he was first discharged from VMC. He rested all afternoon, garnering strength, and on his sixty-third birthday we celebrated in the evening with a sumptuous meal and home-baked cake. It was a happy time. Nothing was said about how fleeting and precious it was. As I look back, these two weeks seem an almost idyllic respite from the violence of his illness and inexorable decline. Dad regained some of the ground he had lost. He was able to get around by himself and do all of his self-care, with Mom and me managing his medications and changing the adhesive ostomy bag at his right flank into which the catheter drained. We played in the park with Lila and shopped for a video camera. Mom indulged herself in buying little dresses and tchochkes for Lila. Dad went along on as many of these ventures as his energy--and patience--would allow. One of us was always with him if he chose to stay home.
Anita and I lived in an older home in the neighborhood of the community college. Over these few weeks our one-bath, two-bedroom, stucco Spanish-style home had gradually acquired a quasi-clinical decor. A front room that doubled as a guest room was now the sickroom. We rented a queen-size bed with a firm mattress and placed our dilapidated sofa bed in storage. The urine bottle became a familiar fixture in the room, and a portable bedside commode had been tucked behind the closet door since Sy's most recent trip to the hospital. In the living room stood an aluminum walker that he refused to use. In the kitchen, cans of Ensure formed a pyramid on the counter. Jars of Metamucil and plastic bottles filled with medicines and vitamins were neatly arranged between the toaster and the windowsill. A three-ring binder containing the current medication log, selected medical records, and a copy of Sy's living will stood upright alongside the cookbooks. We had cleared a vegetable drawer in the refrigerator for other medicines, a liquid morphine solution, and two types of suppositories--one for constipation, another for nausea. Also in that drawer were several vials of injectable pain medicine Gerritt had prescribed.
One morning Mom woke me at around six o'clock; Dad had awakened in a cold sweat and was complaining of his side hurting. Within minutes I pinpointed his liver as the source of pain, undoubtedly due to another infection, and we immediately took him to VMC. Within an hour he was admitted to a semiprivate room.
An announcer called the play-by-play for a baseball game in Spanish from a television in the corner of Sy's room while I started an IV, drew blood, and collected new samples of bile for culture. As soon as the radiology department could take him, I sent him down for a chest X-ray and another ultrasound test. Gerritt, the attending physicians, and I assumed that the collections of bile within the liver had again become infected, but we wanted to make sure he didn't have pneumonia or an abscess that needed draining. Dr. Lagrange repositioned the biliary catheter for better drainage. Dad tolerated all this without complaint, but it sapped his energy and washed him out for the next few days. On the fourth day, I knew he was a little better because his main concern was how for his new roommate, who had been admitted the day before. Dad was worried about the late-night wailing in Spanish that he could not help hearing. I inquired and learned that his roommate, Jorge, an undocumented migrant worker, had been in a serious car accident and had been told the night before that his four-year-old son had died in the crash. Though Jorge spoke almost no English and Dad even less Spanish, by the time of his discharge three days later, Sy and Jorge had somehow become good friends.
Early on a Saturday afternoon, two days after he had conic home for the second time, Dad and I sat together on the covered porch in our backyard. I had just returned from weekend rounds, and he had just finished breakfast and come outside to sit in the shade. At first neither of us said much, and I busied myself adjusting the video camera atop a sturdy tripod. While Dad felt self-conscious about his appearance in public, he seemed completely unaffected by the presence of the camera. I focused it and pushed record, knowing we were about to have an important discussion, and wanting to capture every fleeting minute of our time.
Mom and Dad had been scheduled to leave two weeks earlier, but when he had gone into the hospital their return had, naturally, been postponed. I'd begun to worry whether he would make it back to New Jersey. We hadn't talked about it for months, but I knew the hospital in New Jersey was where he wanted to die.
Dad sat in a padded wooden armchair I had dragged out onto the porch for my parents' visit. Although it was already seventy-five degrees out, he asked me to help him on with his beige cotton jacket, and he wore his light blue summer fedora. When I watch the video now, it is as if the mental image I carry of my father has been digitally morphed with that of a famine victim. He is all bones, his nose more prominent than ever, and, even seated, his once-heavyset frame seems almost lanky.
"Mom told me you ate well." For weeks the status of his caloric intake had replaced the weather as preferred small talk.
“Yeah, it was good," he responded, without emotion.
"Did Molly call this morning?"
“Yeah, she called, but I told her to stay home." He looked out at the remain of last year's garden, his chin cradled in his left hand in a pensive pose. Molly had just spent a week with them in New Jersey, and he knew she needed to be back at work in New York City.
"What do you see happening after you get home to Jersey?"
"Dr. Markham will find something to do for me." He referred to his oncologist. After a long pause he added emphatically, "I just want to get stronger so I can move myself!" Another pause. "That's all. I want to lay out in my backyard."
He was somber. Our conversation had an eerie, matter-of-fact tone, despite our mutual acknowledgment of the gravity of the situation.
I pulled aimlessly at the crab grass that had overgrown the flower beds on which I squatted.
"One problem with being at home is going to be the stairs." The small trilevel tract home would be confining for him, even now.
"If I am too weak, I'll go to the hospital." He turned, meeting my gaze for the first time, and, wordlessly, with his eyes and an upward turn of his palm, asked, What else is there to do?
"So you still see yourself eventually going to the hospital?"
"I don't know. When I'm at home I might just rest."
"Dad, I think one possibility, if things get to be too much at home, might be getting the hospice team involved. They are really set up to do this sort of thing and they could provide Mom with the support that she'd need. Another possibility might be the hospice unit at Riverside. It's better suited than the hospital to people who are sick but not needing a lot of acute treatment. It's something to keep in mind."
"Yeah." He nodded slightly in reply.
We sat without speaking for a long time. A minor commotion next door, where a garage sale was in progress, provided a momentary distraction.
"Well, shoot, I wish things were different, Dad."
"Me, too." He answered quickly, as if I had spoken his thoughts. There was sorrow in his raspy voice.
"I know it's selfish, but I wish you could stay here," I said, as I pulled weeds. He was absorbed in thought and his expression remained unchanged. But he didn't say no. A month before he would have rejected the idea outright. I was trying not to pressure him, but we needed to be ready to do something. Yet on any given day I don't think any of us knew quite what. Dad's physical condition changed almost daily; at the moment of our conversation he was still too weak to consider traveling, yet he seemed to be getting a bit stronger. But I knew that things could take a turn for the worse in any hour.
Two years ago, the idea of dying at home would have been completely foreign to Sy. During his lifetime, medical care had advanced by leaps and bounds; antibiotics, surgery, and cardiac care were routinely saving people who would have succumbed to their diseases without these miracles of modern medicine. In the culture of his time, being in the hospital provided assurance that "everything possible" would be done for a loved one. Even before he became ill, we had had discussions about the work I was doing with hospice and the advantages of home-centered and family-centered care for people who were dying. When I was in New Jersey, we had talked about it again, though still within the context of my work. He had seemed interested, though he had mentioned that he saw advantages to being in the hospital so that Mom would not suffer.
On Wednesday morning he complained about his side hurting. For Sy to report pain without being asked meant it was serious. When I examined him, the right upper portion of his abdomen around the liver was tender. I gave him an injection of pain medication and he was able to sleep. When he awakened from his nap, he was chilled and had a 101-degree fever.
I immediately started him on an additional oral antibiotic, per the contingency plan that Gerritt, the other doctors, and I had worked out. I knew it was a temporizing measure at best, and Dad needed to know it. He was lying on his bed in the guest room, his head and upper chest propped up on a red corduroy reading pillow. The windows were all open; a gentle breeze made our batik curtains billow into the room. He was awake but very weak. His skin was almost gray and his brow was beaded with sweat. I pulled up a chair to the side of the bed and put my hand on his forearm. "We have a couple of serious things to talk about."
He looked at me briefly and then turned back to facing straight ahead, as if to say "OK, I'm ready." Once again, we would conduct business shoulder to shoulder.
"Dad, the infection has obviously returned. It's pretty clear that the antibiotics pills aren't going to cut it by themselves. If we're going to get home, we have to move quickly. I know you hate being in the hospital, but if we put you in for a day or two we could pump some more heavy-duty IV antibiotics into your system and, hopefully, get things back in control. I could then fly home with you to make sure that things go all right. We would have to leave as soon as you were discharged, because I think all of it will only buy a fairly small amount of time."
He continued to look ahead, knowing I had not finished.
"You're the boss, and we'll do anything you say. I know you've talked about wanting to get back to New Jersey and wanting to be in the hospital when you die, but it's important for you to know that Anita and I would like to care for you right here, in our home. We've talked with Mom, and she is OK with staying here if you are. We are already set up to care for you; everything we need is right here. More important, we want to take care of you. We love you so much, it wouldn't seem right to have strangers taking care of you when we could be doing it."
Dad slowly turned his head and looked into my eyes. My efforts to be matter-of-fact in this exchange had collapsed, and I was no longer bothering to blink back my tears. I tried to smile while I held his gaze, wanting him to know how deeply I meant what I had said. I expected him to ask questions, but he didn't. Instead, after what seemed like minutes, he again turned to stare past the foot of the bed, laid his head back against the pillow, closed his eyes, and nodded.
"You mean you'll stay with us here? You'll let us care for you here until you die?" Once again, he nodded.
"Oh, Dad, thank you! Oh, Dad, I love you so much!" I kissed his forehead. Until that moment I had not realized--had not allowed myself to consider--how important his decision was for me. I knelt at his bedside, gently laid my head in his lap, and openly wept, while he stroked my hair.
I believe my father figured out at that moment that Mom and Anita and I had more at stake than he did in where and by whom he was cared for. He understood this before I did. It might sound selfish, but it really did matter more to us than him. We had more at risk. When I asked him to stay, I was speaking out of my own needs and love, and also out of pain, exhaustion, and confusion. I imagine that Dad's preference even then would have been to be in a hospital; it was less messy, physically and emotionally. He acceded to our request for the sake of Mom and Anita and me. We all needed to care for him--even more than we knew. He no longer really cared where he was, but he knew we did. At that moment he stopped resisting his physical dependence and turned toward it, as if acceptance of his naked, utter vulnerability was the next landmark on his route out of life. His decision to allow himself to be totally cared for--dressed and undressed, toileted and turned-by his family was his final gift to us.
Once he had decided to die in our home, Dad knew there was nothing left undone. His affairs were in order. Love had been expressed. Goodbyes had been said. He took his pain medications and Tylenol for fever, but otherwise he accepted only sips of ice water or juice. He spent his time resting quietly with his eyes closed, but he aroused easily when one of us spoke his name, as if we had interrupted a train of thought. Often we just sat with him, at times placing a cool washcloth on his warm forehead or placing small amounts of water from a straw on his tongue.
He seemed withdrawn, almost as if busy on some inward endeavor. Saying "I love you Dad" might evoke a whispered "I love you, too" before his attention drifted elsewhere. If his eyes opened, it was only briefly.
On Friday, forty-eight hours after his decision to die in our home, Dad slipped beyond responding. We still talked softly to him as we moistened his lips, bathed him, or changed his pajamas. At this point our "I love you, Dad," or Mom's "I love you, Seymour," needed no response. We just needed to say them. At this point the work of dying was physical, like the early labor of childbirth. I thought how appropriate the obstetrical term labor was; it looked like hard work. Toward evening Dad's condition changed again, now bringing to mind a late phase of labor, also aptly named: transition. Dad was sweating, his heart raced, and his breathing was rapid. His body was working toward the completion of his dying. There was no way to know what he was feeling. We sat by him and held his hand And adjusted his pillows and kept his lips moist and his forehead cool. And we watched. I continued to give pain medication, by injection, whenever he seemed uncomfortable.
There was little for us to do, and none of us wanted to leave his side. This time felt sacred, but not in the way that scripture, liturgy, or chants are sacred. There was a luminous--or numinous-quality to the moment. A great man was passing. So much was being lost, but oh, what a treasure he was. What a privilege to have known him, to have loved and been loved by him and to have been raised by him.
As we sat around his bed and sipped coffee through the long hours of that last night, Mum and I told old Byock family stories that Anita had never heard. Sleeplessness had left us emotionally defenseless, and our shared sadness contributed to a bleary camaraderie. We cried in sadness but also in joy.
At two-thirty A.M., Anita and I lay down for a nap. Less than twenty minutes later, Mom woke us to report that Dad's breathing had abruptly changed. He appeared suddenly to be relaxed, as if the work, whatever it had been, was over. He was peaceful, no longer sweating, and his breathing was easy and deep, though irregular. Mom stood touching his foot, and Anita and I sat on each side of his bed touching his arms, as he drew his last breath and left. For the next hour we continued our vigil: hugging one another, crying intermittently, grieving openly and together.
At four A.M. we called Molly in New York. Our father was dead. It seemed incomprehensible. It was still dark when I called Gerritt at the hospital to let him know my father had died and to thank him again for all he had done. We called the mortuary, and at eight A.M. they took Dad away. It was so real, yet so unreal. Dad was dead. The world had forever changed, yet it still turned; the sun still came up. The next day Mom and I boarded a plane and took Sy home.
Dad's dying jolted me, and provided me with powerful, if unwanted, lessons about dying and about life. Like anyone who loses someone he loves, I groped to make sense out of the inherent meaninglessness of the event. Losing him, the thought that I would never again see him, caused me so much pain that if someone had asked at the time what I had learned from his death, I might have been offended. Yet I asked myself the same question.
Death was beyond anything I could probe; however, the time of my father’s dying, especially the last months and weeks, pervaded my thoughts and permeated my dreams. The memories were full of compelling images and poignant vignettes that connected me with a deep, aching sadness. Something about that time was also, undeniably, precious.
I had grown accustomed to seeing death through medical eyes; my father’s cancer forced me to experience terminal illness from the vantage point of a patient's family. Furthermore, through my father's eyes, I glimpsed dying from the point of view of a person living in the shadow of death. Dad’s dying was certainly not the happiest time in our family's life, but as a family we had never been more intimate, more open, or more openly loving. His illness allowed us, I could say forced us, to talk about the things that mattered: family, our relationships with one another, our shared past, and the unknown future. We reminisced about good times and bad, we cried, and we laughed. We apologized for a host of transgressions, and we granted, and were granted, forgiveness. Through Dad's illness and in his dying, we all grew individually and together.
After my father's illness I began to question my assumptions about dying and everything I had been taught about the care of the dying. I became acutely aware of how patients dying of cancer or other relentless illness were thought of as undignified, particularly in medical settings. I remembered my fierce, proud father, who died slowly, at the age of sixty-three, being consumed too early in life by his disease. I remembered the courage and personal integrity he had exhibited and the ultimate dignity of love he had demonstrated even as he lay dying. As he had done time and again when I was a little boy, Dad had set an example for me as he met the hardest of life's challenges head-on.
In the teaching hospital, death was always treated as a problem. There were questions to answer, a Death Summary to dictate, inches of forms to fill in, and presentations to be made at Morbidity and Mortality Rounds. And, of course, there were always the painful, awkward discussions to be had with family. A strong presumption throughout my medical education was that all seriously ill people required vigorous life-prolonging treatment, including those who were expected to die, even patients with advanced, chronic illness such as widespread cancer, end-stage congestive heart failure, and kidney or liver failure. It even extended to patients who saw death as a relief from the suffering caused by their illness.
Death in the hospital was a macabre event. I had pronounced more than a few people dead in the ER (emergency room) or in one of the ICUs or on the wards. Almost always the declaration was made only after dramatic attempts, such as heart resuscitation, were made to save the person's life. These were often literally dramatic: The actors knew the efforts were futile and for show.
A very old patient named Faith Carver typified a common dilemma on the wards. When she developed a high fever, Faith was transferred to the VMC emergency room from the nursing home where she had resided for years. Ninety-two years old, she was long widowed and had no relatives in the Fresno area. Because of advanced dementia she had not recognized friends for years and was completely dependent on staff for bathing, toileting, and even feeding. Despite the fact that her health had been declining for several years, the photocopied chart from the nursing home contained no living will or other advanced directive regarding her preferences for care. Contacting her next of kin in a distant city, I learned that choices for care in the event of heart failure, stroke, or serious infection had never even been discussed. Mrs. Carver's family, called in during a crisis situation by a doctor they did not know, were understandably reluctant to withhold life-prolonging treatments. This was especially true because her family had not witnessed the extent of her decline.
The situation was all too familiar. Without clear directions from the patient or family to do otherwise, once the patient was in the hospital, efforts to forestall death were obligatory. Every patient with a pneumonia or fever from bacteria in their blood received intravenous antibiotics. Those who died only did so after an emergency code was called over the loudspeaker and a team was summoned to perform CPR, invading the body with tubes, compressing the chest hard enough to pump blood manually (and sometimes crack ribs), and applying electrical jolts to try shocking the heart back into a rhythm. I wondered what it was permissible to die from.
If death on the wards was macabre, in the ER it was ghastly. In the hands of the medical system, even passings that should have been peaceful turned gruesome. Nursing homes, for instance, routinely sent patients only moments away from death to the hospital by ambulance, lights and sirens blazing. By transferring the almost-dead to the emergency room, nursing homes could claim a mortality rate of nearly zero, while providing evidence to families, and any interested attorneys, that "everything possible" had been done. This bizarre scenario extended not only to sudden deaths but also to people who were unconscious, in the final minutes of dying, and expected to die. Even though the medical people knew that death had arrived and any efforts would be futile, the system and their training compelled them to attempt CPR before they could pronounce someone officially dead.
At the time of my father's dying, hospice was unknown to the general population, and dying at home was very unusual. One busy night in the ER, a black family rushed its ancient grandfather to the hospital by ambulance. As I assessed him, lying on a gurney amid the noise and commotion of the ER, it was clear that he was very nearly gone from this world, beyond discomfort or any need for medical care. In taking a brief history I learned that this tightly knit family had been taking excellent care of him at home. They knew of his widespread prostate cancer and recognized that he was now dying. Gingerly, I asked why they had called the ambulance. The patient's granddaughter, a well-dressed woman of about forty, looked at me and, as the meaning of my question dawned and pained realization widened her eyes, she asked in reply, "Isn't it illegal to have someone die in your house?"
As an intern at VMC I realized that I was unwittingly part of the problem. Working on the hospital wards or in the outpatient clinics, I regularly met patients who were dying from advanced disease but did not even have a doctor to call their own. People with widespread cancer might show up in Surgery C clinic on a Tuesday afternoon and be seen by whichever resident happened to pick their chart from the rack that day. During shifts in the ER, I would occasionally meet patients who probably had only weeks to live, who had waited four or six hours merely to have their medications refilled. Reading the label on the empty pill bottle, I'd see that the prescribing physician was a fellow resident who was now rotating through obstetrics or pediatrics or orthopedics.
The county home health nurses were the glue that held together Fresno's sparse public health system across its vast, rural valley. Yet communication among the hospital, the outpatient clinics, and the home health program was next to nil. Cultural and language barriers added myriad difficulties. Within the Mexican migrant community, it was common for patients to spend intervals with different members of an extended family; thus addresses provided to the visiting nurse agency would often have changed between the time of discharge and the first scheduled home visit.
I tried discharging patients from the ward with appointments to my own clinic and writing specific orders for a nurse to check up on them in their homes. Still, more often than not, I was frustrated by a missed appointment, no report from the nurse, and, a week or two later, the readmission of the patient through the ER. Confusion reigned. It seemed obvious that some planning and coordination would benefit all concerned.
What was to become a hospice program began as a weekly early morning meeting in the cafeteria, which I initiated over a year before my father became jaundiced and started itching. I was not aware of having any special insight into dying, nor did I have any special interest in terminal care. My involvement came, I think, from a basic sense of justice and a sense of pragmatism.
One day, while on my first-year surgical rotation, I was told to discharge Mr. Waters, a patient who had an open abdominal wound from cancer surgery that found unresectable tumors and from which he would never heal. Mr. Waters was fairly comfortable but would die within a week, two at the most. He didn't really need to be in the hospital, and we needed the bed on his ward. I worked for hours to arrange for the equipment and services needed to adequately care for him at home. In the process of doing so I began talking with a social-work student at the hospital, Kimberly Dougherty, about how things might be different.
Kimberly and I decided to keep a file card on each terminally ill patient who had recently been discharged from the hospital. The card included the names of a resident physician (who agreed to follow the patient in his supervised clinic), the home health nurse assigned, and the primary caregivers in the patient's family, with the patient's address, phone number, and address, with directions. Each Thursday morning Kimberly and I and a number of people representing a discipline or department of the hospital met over coffee and doughnuts and shared updated information about the patients' whereabouts, clinical condition, and functional status. Dr. Larry Stohlberg, a faculty oncologist, attended regularly, as did a social worker supervisor, a nurse from the medical floor, a chaplain, a dietician, a physical therapist, and a pharmacist. The county visiting nurse service also sent a nurse every week as a liaison to the home health staff. They were particularly enthusiastic; nurses now knew which doctor to call for medication refills, and the incidence of wasted long drives through the hot Central Valley had plummeted.
Within a couple of weeks we decided to call the meeting a program and chose the name Esperanza, from the Spanish esperar, "to hope" and "to wait." We borrowed two drawers of a file cabinet in the social service office at the medical center and printed half a ream of stationery. The Esperanza Care Cooperative was born.
The administration of VMC was initially wary of this upstart hospice program within its walls. But within months the positive effect Esperanza had on staff and patient satisfaction was indisputable, and the attitude of the administration gradually shifted from tolerance to acceptance. Communication within the hospital improved as the social workers and nurses were better able to exchange critical information with the resident doctor who knew a patient from previous admissions or from her clinic practice. Discharge planning for Esperanza patients was streamlined and some hospital stays were shortened because of improved coordination between the wards, the clinics, and the home health program. In the course of the weekly discussions a number of major crises were averted because problems could be dealt with in a timely manner.
After my father died, my interest in hospice deepened. Most of the discussions at hospice meetings were about pragmatic or medical things: how to get a hospital bed into a trailer; how to coordinate care within a family of five adult children from two generations, some of whom would never admit that the family's matriarch is dying; how best to treat bone pain in metastatic breast or prostate cancer; and what to do when a patient's nausea will not go away.
Every once in a while a family would return after a patient died and say that their loved one's passing had been extraordinary. "When we heard Mama was terminal, it was the worst thing that ever happened to our family, but this last month with her was some of the best time we have ever spent together" was the sort of comment I had occasionally heard before but had always dismissed as a peculiar, if pleasant, phenomenon. Now my ears perked up whenever someone mentioned a case that had gone especially well. A nurse might talk about a patient who reported a sense of wellbeing or contentment in the midst of their dying. Indeed, I began to notice that every so often a terminally ill patient would smile at me and seem not only comfortable, but also oddly satisfied, while only days from death.
It was a revelation to me that good deaths existed outside the realms of fiction, religious literature, or poetry; they were apparently uncommon, but real. The phenomenon of "good deaths" seemed to provide a window into the core of hospice work and, perhaps, into the heart of the human experience of dying. I began asking patients and families to help me understand how they felt and why.
Several things became apparent early on. The first was that the experience of dying was highly individualized. Some people died much as they had lived, while others changed in dramatic ways. The most positive experiences reported by patients and families involved change that they described as important or even "healthy." I also noticed common, salient features within the rich variations of individual experience. Patients who died most peacefully and families who felt enriched by the passing of a loved one tended to be particularly active in terms of their relationships and discussions of personal and spiritual matters. These families in particular also seemed to be involved in the person's physical care. In the broadest sense, it was as if dying from a progressive illness had provided them with opportunities to resolve and complete their relationships and to get their affairs in order.
This was another revelation--that good deaths were not random events or matters of luck; they could be understood and, perhaps, fostered.
While I was working to understand dying and improve my own care for my dying patients, the clinical work of hospice was working on me, sending roots deep into my psyche and soul. In the years that followed my career took me first to a family practice in rural Montana and then back to emergency medicine in Billings, and then Missoula.
Through the years, the geographic moves, and the practice of family and then emergency medicine, I remained involved in hospice work, compelled by the problems of the dying and fascinated by the phenomenon of the good death. More than once I have witnessed a hospice nurse smile and nod to a colleague in acknowledgment that a case had gone well, as if fulfilling the old adage: "To those who know, no explanation is necessary, to those who don't know, no explanation is sufficient." At conferences and in the medical literature there was surprisingly little, if any, discussion of good deaths. Without a consistent language and conceptual model for the range of human experiences at life's end, a taxonomy to label what we clinically saw, it was as if the phenomena did not actually exist. Out of curiosity, I began asking hospice colleagues to help me define success at life’s end. I asked nurses, social workers, pastoral care providers, bereavement coordinators, and doctors. The choice of words used to describe “success” varied widely. A number of hospice caregivers referred to the dying person’s having changed in a spiritual manner, but there seemed to be a wide variation in what was meant. At least as often as not, the account of the patient's good death did not sound particularly spiritual. Others talked about the person or family having coped well with the illness and death. Still others spoke of healing that had occurred between the patient and loved ones or within the person dying. And some chose the terminology of growth.
In recent years I have consciously rejected the term good death because I have not found it helpful in describing the personal, human experience of decline and demise. Good death connotes a formulaic or prescriptive approach to life's end, as if a good outcome chiefly depended on the right mix of people, place, medications, and services. Furthermore, the phrase good death tends to blur the distinction between death--the state of nonliving--and the preceding time of living.
If you ask someone to describe what, for them, would be a good death, they will typically tell you what they want to avoid. "I don't want to die in pain." "I don't want to suffer." "I don't want to be a burden on my family" "I don't want to leave my family with debts or go through our savings." "I don't want to die alone." The image such statements convey of a good death resembles a photographic negative, devoid of tone and texture or real color.
In contrast, the phrase dying well seems better suited to describing the end-of-life experience that people desire. It expresses the sense of living, and a sense of process. To my ears it also carries a connotation of courage. Furthermore, dying well expresses what I have witnessed most consistently: that in the very shadow of death one's living experience can yet give rise to accomplishment, within one's own and one's family's system of values.
Over the years I have met a number of people who were emotionally well while their physical body was withering and, for some, literally rotting. Logically, if even the most emotionally robust among us will eventually die, it follows that a certain wellness in dying must be possible. My experience in hospice confirms that this is true. Even as they are dying, most people can accomplish meaningful tasks and grow in ways that are important to them and to their families.
In my clinical hospice work, the conceptual model of lifelong human development has provided me with an orientation and thus has helped me to orient others. Years ago I began keeping notes on the developmental landmarks and "taskwork," as I call it, relevant to the end of life. I hoped that defining the landmarks might provide some light and offer a general sense of direction within this dim, foreboding landscape, and that naming the taskwork might provide paths for a person's individual journey.
This developmental work reliably enhances the quality of living.
The process is intriguingly similar to the stages of pediatric development. To the toddler, the world keeps shifting; her physical and emotional environments change frequently and in unpredictable ways. How she sees herself and how she is seen differ from month to month and, at times, week to week. What others expect of her continually changes. Within her body and her person, new needs regularly arise and must be satisfied. Life for the toddler presents fresh challenges that must be successfully negotiated, or she feels insecure. To the extent she persists in clinging to old strategies of navigating in the world and relating to others, there is distress. For some children, the rate of change proves too fast--the extent of growth and development demanded by circumstances proves too large to compress into a few weeks' time, and, at least transiently, there is suffering.
Someone who is dying, like the developing child, goes through stages of discovery, insight, and adjustment to constantly changing circumstances in his person and in the ways people react to him. People who are dying often feel a sense of constant pressure to adapt to unwanted change. As a person's functioning declines, the physical environment becomes threatening. A trip to the bathroom may become an hour's chore and then, a few weeks later, a major event. On learning of the grave prognosis, family and friends may begin acting differently, becoming serious or even solemn in one’s presence. People may avoid one out of their own emotional pain, leaving one feeling awkward and isolated, an innocent pariah. New strategies are urgently needed to forestall a sense of personal annihilation. Mastering the taskwork may involve personal struggle, and even suffering, yet it can lead to growth and dying well. The tasks are not easy. But as a dying person reaches developmental landmarks such as experienced love of self and others, the completion of relationships, the acceptance of the finality of one’s life, and the achievement of a new sense of self despite one's impending demise, one's life and the lives of others are enriched.
For the growing child and her family, each development landmark is typically accompanied by feelings of mastery, expansion, a sense of wellness, and, at times, exhilaration. The same feelings are expressed in the stories of patients and families who may be said to have died well. Often the challenge for a family, loved ones, and other caregivers is to recognize the opportunities for growth and development and to help the dying person achieve them. This takes courage. It takes a willingness to talk about things usually avoided, like painful memories, hurt and buried feelings, and the pragmatic details of dying and death--including with whom and where, obituaries, cremation or burial, and funerals. The time of dying is a dark, foreboding place--the end of the road, beyond which lies an unknown, terrifying terrain. But identifying the tasks and landmarks to be met can provide a reassuring map through an otherwise dim future. One way to start this journey is by asking "What would be left undone if I died today?" and "How can I live most fully in whatever time is left?" These questions can illuminate the tasks and landmarks ahead.
Over the years our hospice team in Missoula has become increasingly adept at helping people work toward end-of-life goals that have meaning for them. And it has become common for people we encounter to achieve a sense of inner well-being even as they die, and for families to express that their loved one's dying was as precious as it was painful. I know of no better way to explain what I have learned than to relate the stories of some of the people I have cared for. [1-24]
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