By Anne Bennett Swingle
For those in search of a cure, Hopkins long has been the hospital of choice. Now, if several determined clinicians have their way, it also will become a better place to die.
ike Carducci never expected much of a turnout for the meeting he and social worker Dana Naughton called last January. They had invited colleagues via e-mail to a Hospital conference room to discuss an issue much on their minds. “Staff throughout Hopkins are researching end-of-life and palliative care. Rather than working independently, can’t we collaborate to improve treatment for patients facing death?” Two weeks later, a throng of nearly 200 doctors, nurses, social workers, even a few of the merely curious, filed into cavernous Hurd Hall, where the gathering had quickly been relocated.
Carducci, a boyish-looking assistant professor specializing in tough-to-treat tumors of the genitourinary tract, addressed the group. Things had not been easy for him, he said. He had lost 42 patients last year and 56 the year before. Time after time, he had enrolled desperately sick people in experimental trials, knowing all the while what little honest hope the treatments held. All too often, he had watched colleagues send patients off to community hospitals or hospices to die. “We are here today,” he said, “because we can no longer abandon these patients.” Carducci asked how others were approaching end-of-life care, and one after the other, people began coming forward. A pediatrician said she was teaching residents in the Children’s Center how to talk to parents of terminally ill children. A social worker was looking into the benefits of spirituality at the end of life; a young nurse was studying pain management; a neurologist was exploring how caretakers in intensive care units—the Hospital’s front line for this kind of treatment—make decisions; and an HIV specialist was working hard to improve the experience of children with AIDS.
The roomful of projects that spilled out that winter morning were eye-openers, but only a microcosm of what’s happening nationwide. All at once, end-of-life issues are in the spotlight. At Hopkins, the strength of the undertaking may be particularly striking, because clinicians here, with their focus on biomedical advances, have been accused of fixating on maintaining lives rather than palliative care. Navigating the transition from cure to comfort, therefore, hasn’t always been easy.
“Never a Time I Felt More Alone”
Bill O’Brien, an immigration consultant from Rockville, Md., was 76 years old when he arrived at Johns Hopkins with terminal prostate cancer. Advised not to have surgery because of his age, he had been treated at his local hospital first with radiation and then, when the cancer spread to his bones, with hormones. By February 1996, the hormone therapy had proven ineffective, and doctors had told him no further standard treatments were available.
“There was never a time,” recalls Bill’s wife, Louise, “when I felt more alone.” The O’Briens had seven grown children, but because Bill, a man of strong faith and hope, wanted to shelter them from the bad news, Louise could not even turn to them for support.
But Louise O’Brien, a psychiatric nurse, was no stranger to the medical scene. Unwilling simply to sit back and wait for Bill to die, she consulted the Physicians Data Query (PDQ) on the Internet and came on a big clinical trial for a promising new chemotherapy for advanced prostate cancer taking place right up the road at Hopkins. The principal investigator: Mike Carducci.
After meeting Carducci, the O’Briens’ spirits soared, recalls Louise. “Mike Carducci was everything a doctor should be. He was compassionate, but at all times professional. We felt he was telling us the truth.”
Bill started the new chemotherapy in April 1996 and for the first couple of weeks did well. Then he began to go downhill again. By Sunday of the third week—at the exact moment when Carducci and the entire oncology team were in Florida at a national conference—Bill grew desperately ill; his bowel perforated and septicemia set in. All seven children gathered that night as their father underwent emergency surgery and then lapsed into a coma. The medical oncologists thought the end was near, but still, the cancer surgeons told Louise they thought they could save him. “We’re going to get him up tomorrow,” they assured her.
Dying is Hard
Bill died early the next Friday morning, May 10, 1996. For Louise, it wasn’t so much the fact that the team had been away, or the conflicting opinions, that upset her about the care her husband had received, but the refusal, on the part of the doctors, to acknowledge the elemental and all-consuming sadness attached to her husband’s death. “Human suffering is something that’s so overwhelming for the patient and family,” she explains. “If it could be addressed, it would make a difference.”
Matt Loscalzo couldn’t agree more. Loscalzo, director of patient and family services in the oncology center, believes that many doctors are reluctant to confront death squarely and help patients and families manage. “Caring at the end of life is complex and difficult,” he says. “Dying is hard. It’s slowing down, it’s taking care of business, saying goodbye to the children. Dying is a process, death is the event. It’s like looking at the sun: You can only look at it briefly, and then you turn away. There is nothing glamorous about care at the end of life. No doctor is going to win the Nobel Prize for treating pain, for holding a hand, for sitting with a family.”
An authority on palliative care, Loscalzo came to Hopkins in 1993 after 13 years at Memorial Sloan-Kettering in New York City, where he helped to develop the first supportive care team for dying patients. At Hopkins, it was he who jump-started the palliative care initiative when, as chair of the home care committee reviewing discharge planning, he noticed that families were feeling abandoned.
In the nearly two decades of Loscalzo’s career, the definition of palliative care has evolved. It once meant, simply, alleviating pain with drugs, mainly pain killers like morphine and only at the end of life. Today, palliative care involves a host of new therapies and drugs that can stabilize disease, keep patients comfortable and perhaps even prolong life, throughout the illness process.
Having It Out
A couple of months after her husband’s death, Louise O’Brien, armed with two of her children, returned to Hopkins to have it out with Mike Carducci. The case had troubled him, too, and for both, the meeting was cathartic. Together they grieved for Bill and shared frustrations about his last days. Carducci apologized for what Louise had had to go through. As she was leaving, Louise said: “I want you to try to do everything you can to make it easier for others than it was for us.”
Even now, more than two years later, Bill O’Brien’s case haunts Carducci. “I remember that first day they came in,” he says, “and how much hope they left with. They had already been told there was nothing more to be done. I sold them hope and time, and they were short-changed.” He liked them. They were one big, attractive family. Plus, men with prostate cancer are his hands-down favorite patients. “I get to know how they think, how they do. These patients are like friends that keep coming back. It can be for years.”
Carducci, 36, is the definition of comfortable. He wears khakis and Docksides, and to his oncology patients he says things like “the only good cancer cell is a dead cancer cell” and “cancer sucks”—all to help quell the fear of the disease. He loves caring for people at the end of life, he confesses. A native of Florida and a devout Catholic, he attended Georgetown University, where he soaked up a fair share of courses in ethics, and then medical school at Wayne State University. Following a chief residency in medicine at the University of Colorado, he came to Hopkins on a fellowship in GU cancers and was hired to develop and evaluate antiprogressive, nontoxic agents with the clinical goal of stabilizing the disease.
“I test new drugs. That’s what I do,” he says, with a grin on his baby face.
In September 1996, not long after Louise O’Brien implored him to reach out to dying patients and their families, Carducci set to work with colleagues at the Oncology Center to spearhead a movement to improve treatment at the end of life. Their first step was to set up a committee on palliative care that would include caregivers from every part of the Hospital. Patients don’t just die of cancer, the oncologist points out. In fact, in 1997, among the 888 total deaths (excluding those in the emergency department) at Hopkins, 172 were in surgery, 169 in oncology, 109 in cardiology and 100 in pediatrics. But for Carducci, attracting others to his effort posed a problem. “Folks had no clue who I was. I’m just trying to build a name.” He decided he needed to get out and have a look around.
It’s the Small Things People Remember
During the next few months, Carducci found some surprises all about him: In informal but deeply personal ways, caregivers throughout the Hospital were deeply involved in the deaths of their patients. At the Children’s Center, where the end of a life may come hardest, for 13 years staff have held an annual service to remember young people they have lost. And recently, pediatrics chief George Dover had formed a good death committee made up of doctors, nurses and social workers whom he asked to concentrate on improving the experience of dying for children and their families,
“Often, it’s the smallest things that a parent will remember,” remarks Lisa Phifer, director of pediatric nursing. “Holding a hand, turning down the lights. We take hair, impressions of the hand; we do a lot to create memories.”
Pediatrician Nancy Hutton, who’s been taking care of children born with AIDS ever since 1985, was working under a Project in Death in America grant to improve their end of life. “One thing that’s helped,” she says, “has been knowing that after I sense in my heart that I’ll lose a child, after I grieve, I feel happy and at peace. Lots would still say, ‘There’s nothing else to do.’ But I say there’s so much we can do to make sure the child is not in pain or in distress, that the parents know someone cares. I feel joyful; I feel this is the ultimate gift.”
For Carla Alexander, medical director of Hopkins’ home hospice and a major mover behind the palliative care initiative, that’s the approach she wishes everyone used. “It means supportive, continuing, active care for people with chronic illness,” she says. “It means working closely with the patient and his family. It’s intensive care.”
Carducci discovered that for some physicians, new ways of thinking about death and dying have altered their timeworn approach to patient care. Oncologist Phil Burke, for instance, has spent his 35-year career trying to prevent people from dying of leukemia. “It has always been my urge to treat everyone,” he says. Now, looking back, he realizes that some patients would have done poorly no matter what treatment they received. Through a formula he’s developed, Burke now can predict just who those patients will be, and for those 20 percent, he now prescribes his brand of palliative care: medication and therapies, not an assault of chemo.
“With the support systems we now have, like platelets and antibiotics, many of these cancer patients can live out their last days at home with their families,” Burke says.
Learning about Dying
For nurses and doctors like the ones Carducci met as he took up his palliative care crusade, reaching out to dying patients and their families seems almost intuitive. For whatever reason, however, other professionals find it difficult. And for them, until recently, there has been no way to master these skills. End-of-life training has been largely ignored in most medical school and residency curricula. A recent National Institutes of Health study found, in fact, that most doctors learned how to care for dying patients by trial and error. Of the 32,000 oncologists in the United States, Canada and England surveyed, only 20 percent said they had had formal courses.
Edward Lymon is a prostate cancer survivor, but it is a deadly infection of the heart—cardiomyopathy—that’s landed him in the cardiac care unit. Lymon, 55, is intubated, semiconscious and resting peacefully. Both his wife, Barbara, and his current partner, Liz, are at his bedside.
Lymon and his wife have been separated for nearly 12 years, but they have maintained a relationship for the sake of their two sons. College sweethearts from the same small town, they were a golden couple when they were young and courting, and even today, their families remain close.
Lymon has no living will, but he has told Liz in no uncertain terms that she shouldn’t allow any extraordinary measures. He wants a peaceful death. Barbara, though, wants the doctors to try to save him. She is Edward’s legal surrogate, and knows it. She is a secretary at a prestigious law firm, and she is front and center, doing everything she knows how to make her husband comfortable. The doctors are concerned because she’s made a veiled threat of litigation.
The case of Edward Lymon is not real; it is a vignette, one of several created by neurologist Mike Williams and standardized patient specialist Graceanne Adamo. These life-mirroring stories will be used to teach full-time medical staff in Hopkins’ adult intensive care units—where an estimated 30 to 35 percent of all Hospital deaths occur—about end-of-life decision-making. Adamo says that by working with simulated patients in the Clinical Education Center, doctors and nurses don’t have to feel embarrassed about making mistakes.
Looking at the alternatives with families of terminally ill patients is more than a discussion, Williams points out. “It’s a negotiation, one that should provide a good outcome for everyone.” Now as principal investigator on a study supported by a two-year Kornfeld Foundation grant, he and Nancy Kass of the Bioethics Institute, in addition to creating the vignettes, are learning to understand the subtleties of end-of-life decision-making by asking family members to recount their experiences in the ICU.
Pediatrician Janet Serwint also uses standardized patients to teach house staff how to deal with a child’s death. Working under a grant from the Chicago-based Kravits Foundation, her day-long retreat each of the last three years for some two dozen second-year residents in the Children’s Center also has featured talks on autopsy and organ donation. Serwint takes care to address the aftermath of a child’s death. “I encourage them to go to the funeral,” she says, “to send cards, to call the family and find out how they’re doing. They can have an impact on a parent’s tragedy and help make a sad experience maybe even a beautiful one.”
Becoming a Better Doctor
Today, nine months after the Hurd Hall meeting, Mike Carducci is no longer an unknown. With the support of his boss, oncology chief Marty Abeloff, his group has paid calls on every clinical chief in the Hospital and the dean of the School of Medicine to describe the crusade, and received their support. He’s also found scores of colleagues who feel as strongly as he does about extending warmth and understanding as patients die. Taking shape under his guidance is an interdisciplinary consultation service with doctors, nurses, social workers, a pharmacist and a chaplain that will come to the aid of anyone on the medical staff who’s experiencing a problem with the process. Plans call for this group also to play a part in undergraduate and graduate medical education and in building a research base for end-of-life care.
Carducci has more than made good on his promise to Louise O’Brien. At times, in fact, he has wondered if he was spending too much time on the palliative care initiative. Was he staking his career on this? No, he’s decided; it’s helping him become a better doctor. “It fits into my research and into my care plans,” he says. “And I know now so many of us want better care at the end of life that when we get a real service set up, someone else will take over.”