CHAPTER FOUR
Research Programs at MetroHealth
Little had been done to provide a proper environment for these children.”
“
EMMA PLANK AND THE CREATION OF THE CHILD LIFE AND EDUCATION PROGRAM
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IN THE EARLY 1950S, CHILDREN ADMITTED TO CITY HOSPITAL—AND HOSPITALS EVERYWHERE—were often traumatized. There was no system dedicated to the emotional needs of children as they prepared for surgery. No role-playing with dolls or teddy bears. No one trained to explain treatment in terms children could understand. No one responsible to address their anxiety and fears. Likewise, no staff member was responsible to help the children’s parents or caregivers navigate their child’s hospitalization.
"Little had been done to provide a proper environment for these children,” noted Frederick Robbins, MD, City Hospital’s Director of Pediatrics and Contagious Disease. “We had begun to improve the physical environment, [but] we had made no progress in dealing with the psychological and educational needs of our patients.”1
Dr. Robbins took his concerns to the chairman of the Department of Psychiatry at Western Reserve University, who introduced him to Emma Plank. An invitation from Dr. Robbins quickly followed: would she come to City Hospital?
Two years earlier, Emma Plank was directing the Children’s House of University Hospital in Cleveland, the first preschool in the United States to use psychoanalysis to help children. At the time of Dr. Robbins’s invitation, she was assembling a graduate program in early childhood education at Western Reserve University. She had the credentials to excel at both. At the age of 16, she began an apprenticeship at the first Montessori school in Vienna, Austria, Das Haus der Kinder. There, she attended seminars led by Anna Freud, the daughter of Sigmund Freud and a pioneer herself in child analysis. Following her apprenticeship, she became a leader of Montessori in Vienna, director of Das Haus der Kinder, and the wife of Robert Plank. The couple immigrated to the United States in 1938, following the Nazi invasion of Austria, when they, the Freuds, and 130,000 fellow Austrians fled the country.
At City Hospital, Plank and her graduate students transformed Toomey Pavilion—the contagious disease unit, which housed many children stricken with polio—into a place that treated the whole child.2 A place that recognized the stress that illness caused children and their families and helped them through it. A place with a school, too, which children attended in wheelchairs and beds. Plank and her team worked with occupational and physical therapists, doctors, nurses, and others to help children who would be permanently disabled be as happy as they could be. They used artwork and play to improve their lives. Just three months into the program, the children exhibited fewer discipline problems, greater happiness, and healthy weight gain.3
News spread quickly about Plank’s work and, in 1956, people began coming to City Hospital to see her program firsthand. At a 1961 conference hosted at MetroHealth, Plank presented on different techniques to prepare a child for an operation. The talk heralded the 1962 publication of Working with Children in Hospitals: A Guide for the Professional Team.
At City Hospital, Plank and her graduate students transformed Toomey Pavilion—the contagious disease unit, which housed many children stricken with polio—into a place that treated the whole child.
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Emma Plank was hired at City Hospital to answer Dr. Robbins’s concern for the welfare of the children they served.
Plank’s book created the profession of the child life specialist. This profession continues to grow, and the position of child life specialist has become standard in hospitals across the United States and the world. Forty years after its birth (est. 1982), the Association of Child Life Professionals includes 5,000 individuals representing more than 600 organizations worldwide.
From 1970 to 1972, Plank played a critical role in helping Dr. Richard Fratianne, director of the burn care unit, develop the best methods to heal young burn victims using his T.E.A.M. model of treatment (Together Each Achieves More; see Chapter 5). Plank’s understanding of the child’s perspective of disease, loss, and healing helped Dr. Fratianne’s unit develop and provide child-centric care and emotional support to its youngest patients.
Plank received multiple awards during her career at MetroHealth. At her retirement party in 1972, Dr. Fratianne was in attendance. “I couldn’t hold back the tears,” he said. “What do you do in the presence of a saint?”4
In 2022, the MetroHealth Medical Center employed seven certified child life specialists, one child life assistant, a children’s librarian, and a full-time teacher from the Cleveland Metropolitan School District. They foster a healthcare environment that ensures children are not emotionally harmed while being physically helped. The department serves children—days, weekends, and evenings—who come to Main Campus for emergency department visits, appointments for outpatient treatment, and longer stays for inpatient treatment. In addition to helping children understand, adjust, and cope with medical treatment, the department provides them with emotional support when a parent or other loved one nears the end of life. An endowment, created in 2000 in Emma Plank’s name, provides financial support and keeps her legacy alive.
Plank’s book, Working with Children in Hospitals: A Guide for the Professional Team, created the profession of the child life specialist.
Plank received multiple awards during her career at MetroHealth.
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Plank’s methods continue to benefit the care of children at MetroHealth.
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CHARLES H. RAMMELKAMP, JR.
Finding the Cure for
Rheumatic Fever
In the 1920s, rheumatic fever was the leading cause of death for children between the ages of 5 and 19. For people 20 to 30 years of age, it was the second leading cause of death. The fever caused joint pain and, more concerning, inflammation that damaged the heart.
Two decades later, the disease threatened more than America’s youth. It jeopardized the country’s military strength. Back then, rheumatic fever infected 25 of every 1,000 people on military bases. In one class of recruits, the rate was four times as high, infecting 10 percent of the soldiers. And so, in 1940, rheumatic fever ended up on the short list of infectious diseases that concerned the Armed Forces Epidemiological Board, a medical think tank working to minimize the effects of infectious diseases. The head of the Commission on Acute Respiratory Diseases at Fort Bragg, North Carolina, enlisted Charles H. Rammelkamp, Jr., MD, along with a small army of clinicians and epidemiologists, to help stop the infections. By 1948, Dr. Rammelkamp was leading a unit researching the prevention and treatment of strep throat and rheumatic fever. Over the next six years, the doctor and his team gathered data at the Streptococcal Disease Lab at the Warren Air Force Base in Wyoming. Their research compared two groups of soldiers with strep: one received basic pain relief care for their sore throats. The other received penicillin. Of the soldiers who received simple pain relief, 5 percent developed rheumatic fever. Of the soldiers treated with penicillin, none developed the heart-damaging fever.
That discovery, led by Dr. Rammelkamp, played a critical role in the drop of rheumatic fever deaths in the United States. In fact, it helped effectively eradicate the disease in the United States by 1960. By then, Dr. Rammelkamp had moved to City Hospital.
In 1950, Joseph Wearn, MD, dean of the medical school at Western Reserve University, invited Dr. Rammelkamp to become a professor of medicine at the university, as well as Associate Director of Medicine and Director of Research Laboratories at City Hospital. Dr. Wearn was in the process of overhauling the medical school curriculum at the university. Some of these changes helped City Hospital assemble one of the most accomplished teams of research clinicians in the country. One of those was Dr. Rammelkamp, known as “Rammel” to nearly everyone, whose uncanny ability to lure high-caliber scientists from more prestigious institutions forever changed City Hospital. This included eventual Nobel Prize recipient Dr. Frederick Robbins. (See Chapter 5.)
Rammel, the accomplished researcher, beloved teacher, and admired physician, saved thousands of lives through his rheumatic fever research—and thousands more through his discovery of the link between the flu and life-threatening pneumonia. That work became the basis for the US Centers for Disease Control’s tracking of flu and pneumonia to prevent new cases. From 1960 to 1980, the mortality rate of influenza and pneumonia in the United States dropped nearly 40 percent.5
In 1954, City Hospital ranked first among the nation’s hospitals in terms of major honors and awards. Those included Dr. Rammelkamp’s Lasker Award, given to those who have made major contributions to medical science, for his work at the Streptococcal Disease Laboratory. “The success achieved is due in great measure to his deep originality [and] brilliant leadership,” the Lasker Foundation noted. That same year, City Hospital’s Director of Pediatrics, Frederick Robbins, MD—along with two others—was awarded the Nobel Prize in Medicine for culturing the polio virus in the lab, a critical step toward development of the vaccine that has nearly eradicated the disease around the world.
In 1961, the American Heart Association honored Dr. Rammelkamp with its first research achievement award. It was largely through Dr. Rammelkamp’s efforts, Dr. Robbins later wrote, “that City Hospital became the fine academic institution it is today.”6 His legacy lives on in the cutting-edge research happening today at MetroHealth.
Rammel, the accomplished researcher, beloved teacher, and admired physician, saved thousands of lives through his rheumatic fever research.
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RAMMEL,
THE MENTOR
In the mid-1970s, Senior Resident Alfred Connors, MD, had a patient who presented with rheumatic carditis, acute inflammation of the heart valves caused by rheumatic fever. He shared the case in his morning meeting with Dr. Rammelkamp.
“You’ve got to put this guy on steroids,” Dr. Rammelkamp said and described the proper dosage. Dr. Connors had never heard of such a treatment for rheumatic carditis, and he made his way to the hospital library. The only case reports that mentioned steroids were inconclusive.
That afternoon, Dr. Rammelkamp asked Dr. Connors, “How’s he doing?”
“He’s doing okay,” Dr. Connors replied gently. “But I didn’t start steroids.”
“Why not?” Rammel asked.
“Well,” Dr. Connors said nervously, “I couldn’t find any evidence that steroids help rheumatic carditis.”
“I did that study,” Dr. Rammelkamp said. “I just haven’t published the results.” As part of his military research on infectious diseases, Dr. Rammelkamp confirmed the effectiveness of steroid treatment. He hadn’t, though, secured informed consent from his patients, so he had yet to submit his analysis for publication.
“Al, are you going to be here for a while?”
Dr. Connors nodded. An hour later, Dr. Rammelkamp returned with two boxes. They sat at a table together and reviewed the records of each of the patients in the study. The data was conclusive, and so was Dr. Rammelkamp’s treatment of his senior resident. Dr. Connors recalled, “Most other people would have just said, ‘Darn it! I’m the chairman of the department. You are the senior resident. I’m telling you to do this. I don’t want any arguments with you.’”
That never occurred to Rammel. “He respected the fact that I was having trouble with this because I couldn’t find the evidence. And he went and got the evidence,” Dr. Connors recalled. “He thought, ‘Okay, this guy has a legitimate concern, and let me deal with it as best I can.’ And that’s what he did.”
At MetroHealth, rarely—if ever—did clinicians pursue research for research’s sake. Research opened new horizons for treatment and renewed opportunities for lessons in mentoring.
PROBING THE TRUTH OF THE SOUL
The Work of Dr. Robert J. White
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Robert J. White, MD, PhD, came to MetroHealth as Director of Neurosurgery and head of the brain laboratory in 1961. In his previous position, as a neurosurgery fellow at the Mayo Clinic, he began to devise ways to improve outcomes for patients with spinal cord injuries. During surgery, he had seen that the patient’s spinal cord was often in good shape. Damage to the spinal cord happened later: the swelling of tissue around the spinal cord blocked blood flow from the spinal cord to the brain, causing paralysis.7 Without blood to the brain, humans lose consciousness in 30 seconds. At one minute, brain cells die. At three minutes, brain damage begins. At five minutes, death. If doctors could reduce that swelling, they could save lives. And they could reduce that swelling by cooling the spinal cord.
At MetroHealth in 1968, Dr. White and anesthesiologist Maurice Albin, MD, found that cooling the spinal cord of a monkey four hours after an injury not only reduced swelling, it preserved movement. Half of the monkeys that underwent the spinal cord cooling were able to climb and run within three days.
The following year, Peter Sikora, 17, a student at St. Ignatius High School, was bouncing on his trampoline and landed on his head. Peter knew he had broken his neck and calmly asked paramedics to keep his head and neck from moving as they transported him to MetroHealth. There, Dr. White met Peter’s frightened parents and asked for permission to cool his spine. They asked if it had ever been done before. It had been—on monkeys. They consented to the cooling surgery and, within weeks, Peter regained use of his arms and hands. He went on to become a Cuyahoga County Juvenile Court Judge and lived until the age of 60, when he died of pneumonia.
Dr. White’s research into cooling also lengthened the amount of time surgeons had to operate on the brain from a few minutes to two hours. Soon thereafter, cooling methods became standard in the treatment of brain and spinal injuries. The cooling blankets used on heart attack patients today to prevent brain damage are, in large part, the result of Dr. White’s research.8
In 1970, after a long series of preliminary experiments, Dr. White went on to transplant a monkey head onto the body of another monkey. Because the surgery included severing the spine at the neck, the monkey was paralyzed from the neck down but could still hear, smell, taste, eat, and follow objects with its eyes. Dr. White’s experiments with monkeys and dogs led to outcries by animal rights activists against “Dr. Butcher.” But the negative attention did not diminish Dr. White’s discoveries, which were praised as “outstanding contributions” to medicine and “revolutionary in the broadest sense.” It was his hope that these “total body transplants,” as he called them, would add years to the lives of those paralyzed by spinal cord injuries, who often die prematurely.9
His extracurricular activities were equally impressive. Dr. White was a devout Catholic and spent time with Pope Paul VI and helped establish the Vatican’s Commission on Biomedical Ethics. As a member of the commission, White advised the church on brain death, organ transplants, and in vitro fertilization. He received several papal knighthoods and, in 1994, the Knights of Columbus named him Catholic Man of the Year.
Robert J. White, MD, PhD, came to MetroHealth as director of neurosurgery and head of the brain laboratory in 1961.
His work—including more than 700 bylines on essays and academic articles—and his public profile created a host of other opportunities, from medical advisor to Pope John Paul II to consultant for the film The X-Files: I Want to Believe.
Once, over lunch, when his daughter Ruth asked him why he chose to work at a public hospital in a rough neighborhood when he could have earned more money on a bigger stage, he gave her two reasons. He wanted to conduct research at a county hospital connected to a research university. MetroHealth’s partnership with Case Western Reserve University allowed him to do that. And working for a public hospital meant he never had to turn a patient away.
“He couldn’t imagine turning down emergency victims because they couldn’t afford to pay,” Ruth said. “That came from his faith. He believed that everyone has human dignity and is entitled to respect, whether you were the parking lot attendant or the Pope.”10
In 2004 and 2006, Drs. White, Albin, and neurosurgeon Javier Verdura were nominated for the Nobel Prize in Physiology and Medicine.
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Dr. White was a devout Catholic and spent time with Pope Paul VI and helped establish the Vatican’s Commission on Biomedical Ethics.
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THE BIZARRE HISTORY OF HEAD TRANSPLANTS
How a Scientist’s Daring Experiments Pushed the Limits of Medicine
BRANDY L SCHILLACE
On a cold night in Cleveland in 1971, Dr. Robert White waited for signs of life. He stood, exhausted and still enrobed in a stiff surgical coat, over an operating table. Fluorescent lights bled color from the room, leaving it sterile, silent. A rhesus monkey lay before him—its shaved neck with the stitches still showing in a zipper seam that stretched 360 degrees.
On the line were years of work, months of waiting, and the stinging wounds of battles he’d fought against animal rights groups, the media, and even his own colleagues in the name of science. One hundred frozen monkey brains, thousands of hours of painstaking preparation: It had all come down to this moment of proof. And at last, the eyelids fluttered.
White’s patient was awake, aware, and very much alive. But it had just woken up on a totally different body. Decapitated from its own shoulders, Monkey A had been reassembled on the headless torso of Monkey B.
The monkey, paralyzed from the neck down, gnashed its teeth to bite. “What have I done?” White asked as he watched its roving eyes. “Have I reached a point where the human soul can be transplanted?” A peculiar question, perhaps. But he had just done the seemingly unthinkable: He’d performed the world’s first successful head transplant.
I spent two years writing about this story for Mr. Humble and Dr. Butcher, and most people’s first reaction tends to be disbelief. Surely, you can’t transplant someone’s head or brain Frankenstein-style? Surely, this is fiction and not fact? But I have seen the video footage of this meticulously documented surgery; it is real and every bit as upsetting to watch as you might imagine.
Once assured of its truth, the second question is always the same: Why would anyone want to do it? I’ll get to that. But let’s take a moment to absorb the real story here: It is possible to transplant a head.
So, what exactly does this mean?
Your brain—three pounds of gelatinous convolutions and a hundred billion nerves, invisible in its machinations but responsible for all we think, all we do, and all we are—is a greedy little organ. Thirty seconds without oxygenated blood, and you lose consciousness; one minute, and brain cells die; three minutes brings permanent brain damage; and after five, death is imminent.
How, then, could we ever remove the brain without consequently killing it? The answer isn’t only surprising, it’s deeply important to the way we practice medicine today.
Sometimes, breakthroughs happen by accident. There have been cases throughout history of lost travelers freezing to “death” only to come back to life upon thawing. In some cases, the heart stopped for as long as 45 minutes (true of a recent hiking misadventure on Mount Rainier). No heartbeat, no blood to the brain; and yet no irreparable damage had been done.
White learned this lesson in the 1950s while still a medical student. He’d been treating spinal cord injuries with hypothermic cold—a way of stopping the damage of swelling. But he noticed something else, too. Slowing the brain’s metabolic processes with extreme cold reduced its dependence on oxygen. Under the right conditions, White reasoned, you could remove a brain without hurting it, restart the flow of blood from some donor animal via machine, and keep it alive outside its body. He quickly set about proving it.
We can all imagine a brain, can’t we? A walnut-shaped object, pinkish and blobby. Perhaps we think of it floating, cartoonish, in space. To get the brain out of a living body, however, is a complicated process. And a bit messy.
White first had to “re-plumb” the monkey’s circulatory system, replacing its own venous fluids with tubes and donor blood and plasma. Then he had to carve the monkey’s body away until only the naked, pink bulb of brain remained. Sitting there on a platform and plugged into an EEG, the disembodied brain sent out signals to the graph paper; it was thinking, said White. The brain had just outlived its body.
Of course, not everyone agreed that a percolating monkey brain equaled “life.” But something was clearly going on in there. What does that mean for the self? Are we just brains on legs? Was science fiction correct, and we could keep super-chilled brains alive in tanks, awaiting some distant future? (White actually had about 300 of them, from monkeys and dogs and mice, frozen in his lab.)
Despite having done a startling and almost unthinkable experiment, White hadn’t finished. He didn’t just want to prove you could keep organs alive. He wanted to prove you could transplant consciousness. And for that, he needed a head, intact.
Heads—and upper bodies—had been the focus of White’s Cold War rival, Vladimir Demikhov. In 1958, he’d released footage of a two-headed dog that had been surgically created; Demikhov sewed the head and forelimbs of a small dog to a large mastiff’s neck so that the big dog’s heart kept blood pumping to two different brains. It’s unclear from the research exactly what the two-headed dogs were meant to prove, scientifically, but it inspired White to try something even more radical.
He would begin with two monkeys and then replace Monkey B’s head with that of Monkey A’s body. That’s what he was doing on that cold day in Cleveland, Ohio; his team began before dawn and worked hours without a break on the tiny anesthetized creatures. When the transplanted head awoke, it would hear, see, taste, and smell. It could not move—having the spine segmented like that meant permanent paralysis—but the monkey head lived on its new host body for nine days.
And now, as promised, I’ll return to the why.
Why would anyone dream up such a surgery in the first place? Most of the time, surgery protocols are only done on primates as a first step toward perfecting surgery on people. And you might think that White (surely) hadn’t planned to do a human head transplant—but you would be quite wrong.
The entire project, from its first dimly grasped outline in White’s 1950s medical school days, had been leading to this moment: giving a human head a brand new body.
I realize that might not exactly get at the question of why. But bear with me.
White wasn’t just a neuroscientist playing at Frankenstein experiments; he was a neurosurgeon who spent his days in a trauma hospital trying to save lives. He’d literally held a man’s brain together with his hands after a car crash (the man survived). In another case, he shunted out the liquefied brain matter of a trauma patient to save his life; the man learned to speak again and even to play chess. But not all cases ended well.
White had watched children perish of cancer; he’d seen teens killed by drunk drivers; he’d operated on a dear friend who he could not save. Every day of his professional life, White saw lives hanging in precarious balance, and he wanted to save them all. For White, life was the brain, and as long as the brain still sent out signals, then your life was worth saving. In 1999, a man named Craig Vetovitz sought White’s help for just these reasons.
Vetovitz had become paralyzed after a diving accident in his youth. He wanted to recover as much as he could but found that there weren’t many programs for people with his level of injury. Unwilling to give up, Vetovitz developed his own specialized wheelchair and built a device to help him write despite having almost no movement in his arms.
By the time he met White, Vetovitz owned a business, was married, had children, and led a full life. But his kidneys were starting to fail, and as a paralyzed patient, he wasn’t considered a good candidate for transplant.
If the medical establishment wouldn’t treat him, he reasoned, perhaps White would consider him as his first body-transplant patient.
It seems shocking, doesn’t it? To volunteer as the first for a dangerous experimental surgery that would still leave him paralyzed just as before? But Vetovitz had already faced long odds. He said as much to Cleveland Scene magazine:
Let’s pretend you’re a total quad. And let’s say you’re real thirsty. You gotta ask somebody to get you a glass of water. Then, after drinking that water, you’d have to ask someone to help you use the toilet, because after paralysis, messages can no longer pass along spinal nerves between bladder and brain.
Paralysis wasn’t just about what you couldn’t do; it was also about boundaries and the way your body no longer seemed entirely yours. But Vetovitz explained that this did not make a person “handicapped” and that it was only other people’s low opinion of disabled lives that did that. His life was worth living and worth saving. White was prepared to do everything in his power to provide Craig with a transplant, and not just a kidney —the whole body at once.
There were questions. Would Vetovitz awake in his new body with the same consciousness as before? Would he be the same person as before? What about the neurons in the rest of the body? Would he even survive?
White prepared the surgery protocol: He practiced on cadavers, finding that the human transplant would be far easier than the monkey version had been. He even had a donor body, a brain-dead accident victim, to use as the future home of Vetovitz’s brain. But there are two more things needed for experimental surgery: money and permission. And they didn’t get enough of either.
White died in 2010. He never had a chance to perform that strangest of all surgeries, the human head transplant. But that doesn’t mean it can’t be done. In a 1999 article for Scientific American on our bionic future, White wrote:
I predict that what has always been the stuff of science fiction—the Frankenstein legend, in which an entire human being is constructed by sewing various body parts together—will become a clinical reality early in the 21st century.
Indeed, we have everything we need technically to perform one using White’s own notes, and at least one surgeon (Sergio Canavero) is still vying to be the first to do so. But the question is not—and probably never has been—can we do a head transplant, but should we do one? Is this the best use of our time and resources in a world with plenty of other problems to face?
So far, the medical community has said no.
But the head transplant, in all its labyrinthine ethical twists, has perhaps given us more knotty questions to consider. Not just about who we are but where we are in the strange composite being of brain, body, matter, mind, structure, stem cells, and stardust that makes us human beings. Will the future provide those answers through a human head transplant? White would say wait and see.
This article was originally published in Elemental: https://elemental.medium.com/yes-it-is-possible-to-transplant-a-head-282d110b1cfd. Reprinted with permission.
DIGNITY UNTIL THE
FINAL BREATH
Alfred Connors, MD, and End-of-Life Care
In 1982, critical care and lung specialist Alfred F. Connors, Jr., MD, was serving as Director of MetroHealth’s Medical Intensive Care Unit (ICU) when an elderly man with severe chronic obstructive lung disease was transferred to the unit. The patient was recovering from emergency gallbladder surgery, but as his surgical wounds healed, it was clear that his lung function was so impaired he couldn’t live independently of a ventilator. Still, the man repeatedly asked to be removed from the ventilator and allowed to die, telling Dr. Connors he didn’t want to live attached to a machine. His two daughters strongly disagreed. Having never discussed care at the end of life with their father, they wanted him to live. They demanded that hospital staff disregard his wishes.
These were the early days of critical care. Mechanical ventilators were new. And many complex questions remained unresolved: can a patient request removal from a ventilator if their doctor knows this will likely result in their death? Would such an act constitute euthanasia, a crime in Ohio and most of the United States? How can doctors know a patient’s wishes when they are too ill to share them? What should a doctor do when family members disagree with the wishes of a severely ill patient?
Dr. Connors spent weeks consulting with the two daughters, lawyers, prosecutors, clergy, psychiatrists, ethicists, and the medical staff of the unit. Ultimately, all parties agreed that the patient was thinking clearly, was not depressed or suicidal, and had the right to request the removal of the ventilator and that the care team should comply with his wishes. He was extubated, slipped into a coma, and died peacefully in the presence of his loved ones.
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In 2002, Dr. Connors initiated the MetroHealth palliative care program, which has helped thousands of patients and families live well as death approaches.
That patient was on Dr. Connors’s mind a few years later when the Robert Wood Johnson Foundation requested proposals from clinicians on healthcare and decision making at the end of life. Dr. Connors’s proposal was selected from the 105 applications, and MetroHealth became one of five institutions—and the only public hospital—to participate in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment or, simply, SUPPORT, a ground-breaking study on end-of-life care.
Dr. Connors directed the study of the more than 2,000 MetroHealth patients included in the project. He also served as chair of the SUPPORT steering committee, which guided the design and execution of the study and the reporting of results. From 1986 to 1992, the SUPPORT team studied the care and decisions of more than 9,000 seriously ill patients at hospitals such as Beth Israel in Massachusetts, Duke University in North Carolina, and UCLA Health in California. SUPPORT researchers produced more than 160 scholarly articles. More than 60 of them were authored or co-authored by Dr. Connors. Two of those publications helped establish Dr. Connors’s monumental impact on end-of-life care.
A 1995 article in the Journal of the American Medical Association reported the main results of the two-part SUPPORT study.11 In the first part, patients hospitalized in advanced stages of nine acute and chronic diseases—along with their families and their physicians—were observed for six months or until they died. Researchers documented their care and treatment decisions and found many shortcomings in the care patients received in their final days.
Patients who said they preferred care aimed at optimizing comfort as they approached death often received burdensome and invasive care in the ICU instead. Discussions and decisions about what the patient wanted either didn’t occur at all, or they happened after the patients became too sick to participate. Doctors in the study reported that they expected their patients to initiate end-of-life care discussions. Patients and their families reported that they expected physicians to initiate such discussions. As a result, most patients spent their final days in ICUs, isolated from their loved ones, connected to ventilators or dialysis machines, and in moderate to severe pain. The findings were clear: this was not how most people wanted to die.
In the second part of the study, patients near the end of life were divided into two groups. One group worked with specially trained nurse facilitators, who took responsibility for improving communication between patients, families, and doctors about their prognosis and preferences for care. The goal was two-fold: first, ensure that the healthcare team understood their patients’ wishes early in the hospital stay. Second, ensure that more patients would spend their last days in comfort, with their families, and without burdensome interventions. The other group of patients received conventional care, without the help of a facilitator.
In the end, the presence of the nurse facilitator made no difference in terms of care. The same proportion of people suffered painful deaths in ICUs. The same proportion of doctors were unaware of their patients’ wishes in terms of end-of-life care.
Additional studies from a larger sample of hospitals confirmed the SUPPORT findings. The work sparked a national push for widespread and early use of advance directives: that is, instructions from patients about what kind of care they want at the end of life. As a result, the fledgling hospice movement grew, became more accessible to patients, and established new standards for end-of-life care.
“Now people get multiple chances to tell us what they want at the end of life, and we do our best to make that happen,” Dr. Connors said. “More people die at home, treated with dignity, with their families around them. I’m very proud to have been part of that.”12
Dr. Connors was equally proud of another SUPPORT report. This study explored the effectiveness of right-heart catheterization in critically ill patients.13 This procedure, performed 2.5 million times a year at the time, involves the insertion of a thin tube into a vein via the patient’s neck or groin to measure the pressure in their heart and lungs. It allowed a doctor to measure a patient’s key vital signs without a trip to the operating room or catheterization lab. Most critical care doctors strongly believed the procedure helped prolong the patient’s life, even though there had never been a controlled trial to confirm its benefit.
Dr. Connors and his coinvestigators studied 5,735 critically ill ICU patients, including 2,184 who received right-heart catheterization within 24 hours of their arrival in the ICU. The purpose was to determine whether right-heart catheterization improved survival rates, shortened time in the ICU, or reduced cost of care. The study indicated no improvement in outcomes. In fact, patients who received the catheters were more likely to die, spent more time in the ICU, and had a higher cost of care.
The critical care community was skeptical of these results and reluctant to change. But the study prompted a National Institutes of Health panel of experts to recommend several large, randomized controlled trials of right-heart catheterization. Dr. Connors’s research also prompted studies in Canada, France, and England. All confirmed the SUPPORT findings. Ultimately, doctors stopped the routine use of right-heart catheters in the care of the critically ill.
“This study decreased the use of this burdensome technology. It caused us to question and test the effectiveness of everything we do,” Dr. Connors said. “The care of the critically ill is safer and more effective today because of the lessons we learned from this study.”
Dr. Connors remained committed to improving end-of-life care for years afterward. In 2002, he initiated the MetroHealth palliative care program, which has helped thousands of patients and families live well as death approaches. In 2007, he joined the board of the Hospice of the Western Reserve, serving a three-year stint as board chair. In 2016, he was honored with the Crain’s Healthcare Heroes Lifetime Achievement Award for his contribution to improvements in the safety of care (and related outcomes) for the most vulnerable patients. At MetroHealth, his roles included ICU director, division director, department chair, chief medical officer, chief clinical officer, and chief quality officer for the health system. In 2018, he retired. Three years later, Dr. Connors joined the board of trustees of the Hospice of the Western Reserve Foundation. His work lives on there and around the world.
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“Now people get multiple chances to tell us what they want at the end of life, and we do our best to make that happen.”
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