HOSPICE:
A Counterrevolution
By Rebecca Spencer McCurdy
The world has shifted under our feet so many times in the last 100 years or so that we have stopped trying to name our cataclysms. The impact of the Industrial Revolution of the eighteenth and nineteenth centuries pales in comparison with the “Communications Revolution,” the “Armament Revolution,” or the “Transportation Revolution” of the twentieth and twenty-first centuries, but who has ever heard any of those worldwide upheavals called by name?None of these shifts was more profound than the “Medical Revolution.”
The magnitude of the changes in medicine since just the 1960’s is said to be greater than that of all the changes before, dating back to the Middle Ages. The century that opened without aid of antibiotic therapy closed with organ harvesting and cloning. Medicine, which began the 20th century grappling to understand the simple machinations of the human anatomy now defines and even transforms who we believe ourselves to be. Most profoundly, medicine, which began the last 100 years struggling to learn “what more can we do?” has completely mapped the genome and as a result, in many people’s view, is now capable of doing far more than it should.
The impact of all this on our society is catastrophic. The impact on the individual human life is even more so.
The Hell of Suffering
My niece, Sarah, age thirteen was diagnosed with a brain tumor in the spring of 1998. She underwent very radical surgery and months of chemotherapy and radiation. During the course of the year-long treatment, she lost her hair, lost her ability to walk, lost her hearing, and suffered from blurred vision so severe that she could barely stand to keep her eyes open. All of these were side effects of the treatment, not the tumor.
When she began this process, the doctor told her up front that she could expect “a year of hell” but that in the end he believed she would be well.
At the outset, none of us fully comprehended what he meant by “hell.” It turned out to be a very accurate description. On the other hand, no one that loved Sarah questioned for a moment whether this hell should be undertaken. I don’t think she questioned it herself… she certainly endured it all, bravely and well.
The doctors told Sarah she had a 90% chance for complete recovery. But what if the chances had been 50% or 25% or 10%? When would it have become too much to ask that she endure this debilitation and confinement? Or what if she were 85 rather than 13, and feeling tired and unwilling to undergo such an onslaught on her body? When is what we can do, not what we should do?
My cousin Glenn was diagnosed with a rare form of renal cancer in the summer of 1990, when he was 40 years old. Before this catastrophe crashed into the comfortable life he was living in upstate New York with his wife, Linda, and their three children, Glenn was an outgoing, athletic, handsome, funny man. Because of his youth and otherwise good health, and because his particular brand of cancer was rare enough and deadly enough that it had no proven treatment protocol, Glenn was an ideal candidate for some cutting edge, and unproven, new procedures. Glenn and Linda pursued them all to one degree or another. They traveled first to Boston and later to California, at the invitation of doctors who believed they might be able to help Glenn. Like all families whom cancer has visited, our family became acquainted with a whole new vocabulary and system of measurements. This number goes up, there’s reason to hope. That number goes down… even by a point or two… and we are plunged into despair. Meanwhile, both the cancer and the treatments took their toll. Soon Glenn was no longer a healthy man by any standard.
By the summer of 1991, Linda and Glenn understood that he was not going to be cured, at least not short of a miracle. They still believed in the possibility of miracles, but they had abandoned the pursuit of a medical miracle. Linda told me later that early that summer, before anyone else was even thinking it, they accepted that this illness was probably going to take Glenn’s life. They spoke the words to one another. I don’t know what happened in the intimacy of that conversation. I don’t know who dared to say the words first. I don’t know if it was a conversation of a few hours or days or weeks. But by its conclusion they were together in their assessment of the situation and together in their decision of how to proceed. As Linda summarized it to me later, “We realized that Glenn was probably going to die. So we did everything that needed to be done, and then we loved each other as much as we could, for as long as we could.”
The medical revolution of the 20th century had impacted Glenn dramatically. It told him he was profoundly and gravely ill, long before his own perceptions could tell him that. It cost him a lot – a lot of money, a lot time away from home and family, and quite possibly at least some period of time of feeling good. On the other hand, it also gave him hope for a season. None of us who loved him questioned the appropriateness of trying as hard as he did to save his life. It is even possible that the failed trials of the new medical procedures Glenn underwent yielded information that later helped someone else.
Be that as it may, Glenn and Linda made the decision that the time had come when they no longer wanted their lives to be dictated by the Medical Revolution. It seems like a small enough thing for a man and his wife to decide the course of their own lives. But if this story had taken place only a few short years earlier, the person afflicted with cancer would not have had any real options in a situation like this. The wife at his side would not have been able to implement any decision they might make. All the decision would have been made for Glenn and Linda with practically no possibility of those decision being made in an environment of honest discussion and freedom to act according to personal taste and desire.
But Glenn and Linda had options and they chose hospice to help them implement their decisions. Hospice is the insurgent counterrevolution, trying to turn the tide against the unthinking acceptance of “doing all we can” instead of “doing all we should.”
Healthcare and Hubris
Early in the 20th century, and in all the centuries that proceeded it, it was not unusual for a person to die at home. This did not involve a decision; it was usually the only option. It would be wrong to idealize this process. With few tools at their disposal, families struggled as best they could to combat the ravages of the “wasting diseases.” Children grew up knowing the foul or medicinal odors, the small kindnesses, the cries of agony and despair, the folk skills that were part and parcel of helping grandma as she died at home.
It was women’s work mostly. Men furrowed their brows and paced the hall, tensing against the cries of pain, in much the same way they handled childbirth. Inside the sickrooms women labored over the sick one with very few tools beyond cool clothes and words of assurance. There simply wasn’t much else one could do.
As medical science grew by leaps and bounds and the practice of medical care became the practice of experts, it needed to be carried out in specialized spaces, which, of course, were called hospitals. Surgery, and later, chemotherapy and radiation treatments and immune therapies and transplants and a thousand other increasingly precise procedures and follow-up procedures were discovered, refined and refined yet again.
Lives were being saved. But somewhere along the line two important points got lost. Point #1: everybody eventually dies, and Point #2: treating disease is not synonymous with caring for patients.
I once heard a man recount a story from his childhood of a time in a Sunday school class when the teacher was presenting the simple idea that “everybody is born and everybody dies.” He clearly recalled countering her statement with “I won’t die, Teacher. I’ve had my shots.” We smile at this five-year-old’s misunderstanding of his parents’ explanation for why one had to go through the pain of a vaccination. But it isn’t the least bit humorous when physicians with advanced training and correspondingly advanced hubris, labor under the same misunderstanding They may not often say it, but they do often act as if they believe that “You won’t die, Mister, we’ve got treatments.”
It is the one and only statistic that is beyond argument in the entire world: 100% of all persons currently living in your state, your county, your house – will someday die. We all comprehend, at least cognitively, the universality of death. It is the particularity of death that never fails to catch us by surprise. “Everybody dies” – that I can handle. But “my mother will die” or “my husband will die” or “my child will die” or “I will die” – these are beyond my ability to comprehend.
Death comes to all of us, but it is never a small thing. Death is universal, and yet each particular death changes the world.
I remember the old M*A*S*H reruns. We would watch them night after night, right after the news. I loved the way Hawkeye Pierce, despite the ravages of war and the continual arrival of more and yet more wounded men, always managed to hold fast to his vision of the particularity of each life and each death. How many times did Hawkeye cut open the chest of a man that appeared to be slipping away and manually pump his heart while crying out, “Live, damn you! Live!” Everyone else would be saying, “He’s gone, Pierce,” or “Give it up, Hawkeye.” But Hawkeye wouldn’t give up. He always kept on trying. I want a doctor like that when my life hangs in the balance. I want a doctor that cares that much. But eventually, it is time to stop pumping that heart. Eventually, the heroic becomes merely absurd.
The revolution that unfolded in health care throughout the 20th and 21st centuries included the unsettling fact that long after the physician would have keeled over in exhaustion from pumping that heart, machines can keep on pumping it, a ventilator can keep on filling and depressing the lungs, an tube can keep on pouring in hydration and nutrition.
The counterrevolution that is hospice grew out of the same passion for the particularity of every life and every death. “Live!” hospice workers say. But when they say “Live” they have something more in mind than simple biological survival. “We will not only help you die,” Cicely Saunders, the mother of the modern hospice movement, said, “but we will help you live until you die.”
This is monumental because, with the increasing ability of doctors to save lives, the methodologies and procedures for making life bearable for those whose lives cannot be saved, have been in danger of being lost. “There is nothing more I can do for you,” the physician says. This is not exactly a comforting message to hear if you still have months of your biological life left, and you know the pain, and the loss of control and dignity you are likely to face as your disease progresses.
Hospice says, “Yes, it looks like your life is limited to months, and there is a great deal we can do to make those months worth living."
Life vs. Mere Existence
Carol McKiernan, former executive director of Ohio’s Hospice LifeCare in Wooster, Ohio, where I worked for 30 years, often said “Death happens in a moment of time. All the rest is living.” It is hospice’s purpose to maximize that living, by submitting to a patient’s choices.
Most of the time we spend in healthcare settings, we spend submitting to a doctor’s superior knowledge. When our goal is “cure,” we willingly pay a doctor to tell us what to do, believing that his or her long, expensive education has equipped the doctor to best help us meet our goal. But when our goal ceases to be cure, because cure is no longer a possibility, and instead our goal becomes maximizing our quality life, then the doctor is no longer the expert. The patient is the expert. Only I can define what comprises “quality of life” for me.
The revolution of medical advancement was a wonderful thing, but it left us ill-prepared for the reality that human mortality is an unalterable given. If we can’t cure, what can we do? There are two things a majority of persons facing the end of their lives will say they fear most: abandonment and pain. Motion studies done in hospitals and nursing homes have long shown the precipitous decline in the number of visits by doctors, by nurses, by family members, by friends, once an individual is deemed to be “terminally ill.” That is precisely because if a disease is incurable, then most of us, including medical staff, literally do not know what to do.
A chief responsibility of hospice care is to “be there;” to marshal resources and personnel with the same passion for the sake of caring, as medical care ordinarily expends for the sake of curing.
In addition to “being there” as medical professionals and volunteers, hospice workers are careful to clear the way for family and friends to “be there.” They are careful to never come between the patients and his or her family. As a relative at a distance, I didn’t even know that Glenn was enrolled in hospice until after he died. The important element of Glenn’s story is that his nearest family members were able to lovingly care for him during the last weeks and months of his life. The fact that hospice nurses, home health aides, physical therapists, social workers, dieticians, counselors, chaplains and volunteers were available to Glenn and his family was certainly important to them. But as in any situation where hospice is working as it should, hospice involvement was essentially invisible to anyone but the immediate family. The availability of these supports 24-hours a day, seven days a week as needed, was merely the tool hospice placed in the hands of Linda and the rest of the family. It was the first tool that allowed this family to stay a family and stay together as long as Glenn lived.
In August of the summer in which my cousin Glenn and his wife came to terms with the brevity of his prognosis, Glenn went into the hospital. I didn’t know it then, but Glenn was already a hospice patient at the time of that admission to the hospital. We were told that he was going into the hospital for “palliative” surgery. As far as I can remember, that’s the first time I heard that word that has since become such a guiding force in my life.
Glenn’s surgery was palliative in that it was not meant to “cure” his cancer, but rather to simply relieve some of the terrible back pain he was experiencing.“
Simply to relieve pain.” How easily those words form beneath my fingers as I type. But what a world of deception they hold. There is nothing simple about the relief of pain and nothing small about the accomplishment of it. Pain – that great friend and helper of the one who touches the scalding liquid or smashes his hand with a hammer- constant, gnawing, maddening pain – is the central obstacle to any quality of life for the individual with a limited life expectancy. In that situation, where pain is not telling us anything we don’t already know, pain is no longer a friend, but an enemy. Nothing else can be considered while the body is racked with pain.
The palliation of suffering is the second tool hospice gives to patients and their families.
Glenn’s surgery succeeded in its purposes and Glenn returned home. Somewhere in the back of my mind, although I knew he was gravely ill, I thought that when he really “got bad,’ he would go back to the hospital.
But Glenn never did go back into the hospital.
Glenn’s youngest child, Mandee, celebrated her thirteenth birthday that fall. The pictures show Glenn, emaciated, but smiling, from a balloon-festooned hospital bed in his home’s family room, with a bevy of little girls all around him.
Glenn was the pastor of a large church and he continued his counseling from his bed. He and Linda entertained many dinner guests. Glenn made videos to be shown to his congregation; introducing a new mission project or a new Sunday school curriculum. Glenn’s brother, David, and his family often drove over from the Boston area. His parents came up from Florida. They had Thanksgiving together. They had Christmas together. That year Ohio State played Syracuse in one of the big bowl games, which was a very big deal, because while Glenn’s family was now living very close to Syracuse and were big fans, Glenn and David had grown up in Columbus, Ohio and were lifelong fans of the Buckeyes. On New Year’s Eve, they had football rivalry together.
Glenn participated fully in all these events. On January 5th, Glenn died, having lived his life fully until the moment it ended. None of these things would have been possible if Glenn had not been kept relatively free of pain and other symptoms by the hospice workers’ expert grasp on the complex principles of pain and symptom control.
Hospice care has sometimes been characterized as “mere handholding” (although, frankly “handholding” is pretty important, and not all that common in most medical settings). The fact is that the management of pain and symptoms is a practice that requires great knowledge, skill, and commitment, and can sometimes be as technically advanced as the practice of therapeutic medicine.
Furthermore, hospice workers understand that when someone is dying, it is not just the body that may be suffering. Hospice workers endeavor to give themselves as whole persons to the care of whole persons.
Once, when I was suffering symptoms of a diseased gall bladder, I was sent for an ultrasound. As the technicians smeared my abdomen with their cold jelly, and bore down with their instrument on my over taxed bladder, and chatted among themselves, I realized that as far as they were concerned, I might just as well have mailed my gall bladder in for their examination. The human being encasing the gall bladder was completely irrelevant to them. This realization did not matter much to me at the time. But if I were going to spend the rest of my life as “a patient” I would want those assigned to my care to treat me as more than a complement of diseased organs. In hospice, the disease becomes almost irrelevant, not the person.
Hospice recognizes, and operates under the guiding principle, that human beings are as certainly spiritual beings as physical being, and that suffering is something that happens in the heart and mind and soul of a person, as much as in the body.
It was in the wee hours of the morning when Glenn died. He had become pretty much unresponsive during the night. After everyone else had gone to bed, Linda still sat, or perhaps lay, by his side. His breathing was labored. He would take a breath, and then long seconds would pass without a breath. Then a suddenly a new intake of air would come. Over and over. Linda knew each breath might be his last. She held his hand. She reassured him. Her hospice nurse had probably told her we have reason to believe that hearing is the last sense to stop functioning as the body dies. “Glenn, I’m right here,” she said. “Glenn, I love you.”At some point she found it is herself to say, “Glenn, it’s okay. I know you are so tired. You can go now. The kids and I will be all right.” Glenn took one more breath and then he was gone.
"Every man’s death diminishes me,” Donne wrote. In Glenn’s case, a large church full of mourners expressed well and deeply their sorrow at this tragedy; this loss of a man needed as a pastor, a husband, a father, a brother, a son, a friend. The world changed forever for all of those people when Glenn died.
It is hospice philosophy that the world changes forever when any man or woman or child dies. It is a central tenet of hospice philosophy that life is precious and should be celebrated and nurtured regardless of how much or how little of it remains… regardless of how few or many are present to mourn its passing… and regardless of how great or small are the resources available to support that nurture.
“We loved each other as much as we could for as long as we could,” Linda said.
Not all families that face terminal disease are blessed with such love. But all families deserve the tools that will allow them to face the end of life with the maximum amount of choice the limitations of a failing body will afford. With these tools, the last days of life often can be, not the garish nightmare many of us imagine terminal illness to be, but sometimes, the best, most poignant and loving part of a person’s life.
“Nothing so concentrates the mind, as death,” the Buddha tells us. The counterrevolution that is hospice is the fight to allow each of us freedom from pain, freedom from debilitating, futile treatment, and freedom from isolation, in order that we may benefit from our final concentration on life.
The original version of this essay by Rebecca Spencer McCurdy was published in The Mars Hill Review.