Daniel Siegel's headaches first struck during martial arts practice. A second-degree black belt at kung fu and a straight-A student at Yale University, Siegel was a gregarious sophomore of keen intellect, the kind of kid whose teachers kept his assignments years after he'd moved on. By spring break, the headaches had become painful and persistent enough to warrant a visit to the doctor. The MRI diagnosis arrived as Siegel was studying for finals: He had a malignant brain tumor. His parents still struggle to comprehend it. "How can somebody like that get brain cancer at the age of 20?" says Everett Siegel, Daniel's father. "This doesn't happen. It happens in the news and you feel sorry for somebody. Until it happens to you."
Siegel's family was uniquely well situated to confront his illness. Both parents work for Johns Hopkins Medicine. His mother, Janet Berg, is an instructor in Community-Public Health at the School of Nursing, and his father is a psychiatrist and assistant professor at the School of Medicine. They knew how to navigate the medical system and had personal relationships with many of the people in it, including neurosurgeons and oncologists. "We knew people, we knew how to get what we wanted, and people cared," Berg says. Daniel was also an intensely proactive patient. Declaring "humor, optimism, and dignity" his guiding principles, he spent hours combing through listservs and academic journals, looking for new brain cancer treatments and corresponding with researchers and clinicians in Europe, Canada, and the West Coast. Over the course of his illness, the family sought opinions from experts at institutions besides Johns Hopkins, including the National Institutes of Health, MD Anderson Cancer Center, Duke Cancer Institute, and Children's National Medical Center. Whenever possible, they sought outpatient treatment, to minimize Daniel's time in the hospital.
But by the fall of 2010, it was clear that Daniel's cancer was unstoppable. After several promising rounds of treatment, the disease returned with a vengeance. The family decided the treatments were causing needless suffering and turned their efforts toward making the best of Daniel's last days. He had prepared a will and an advance directive; now he focused on saying goodbye to his many visitors. With the help of home hospice, Berg used her nursing skills to care for him, and his older sister, Leigh, tracked his myriad medications with an Excel spreadsheet. They retained their sense of humor even then. Everett recounts one typical conversation: "I was talking to [Daniel] and he said, 'I want to be remembered.' And I said, 'Dan, I'll always remember you, till the day I die.' And he said, 'What happens when you go senile?'" Siegel laughs. "That was just Dan."
Hospice helped manage Siegel's pain and provided a hospital bed so he could be downstairs in the family room. As the hour of his death drew near, Berg drew on her professional experience to help her family cope. For more than a decade prior to her son's diagnosis, she had taught a course at the School of Nursing titled Dying and Death: Personal and Professional Perspectives.
On November 27, 2010, Daniel Siegel died at home, surrounded by family. His early death will forever be the defining tragedy of his loved ones' lives. But his parents take comfort from the foundation they formed in his honor and the fact that throughout his illness they managed to honor their son's wishes, maintaining humor, optimism, and—perhaps above all—dignity.
Should a serious condition like brain cancer strike, anyone might hope for the emotional and logistical support Siegel and his family had, if not the eventual outcome. But the Siegels had advantages few can claim: a close-knit family and community, deep familiarity with the medical system, personal connections within that system, financial stability, nursing expertise, even a background in end-of-life matters. As a result, their experience was very much the exception.Some 90 million Americans currently have serious and life-threatening illnesses, according to the Center to Advance Palliative Care, and that number is expected to more than double over the next 25 years as the baby boomers age. While modern medicine has extended lives far beyond what was once thought possible, the field has not attended so well to the quality of those lives. For a host of cultural and financial reasons, the default approach of the medical system has become the aggressive treatment of disease, sometimes at the expense of the patient. Chronic illness and its treatment come with side effects ranging from anxiety and family discord to delirium, nausea, and pain, problems that studies indicate are often not adequately addressed. For example, a panel of experts convened by the National Academy of Sciences' Institute of Medicine recently released a damning report on cancer care in the United States. Calling it a "system in crisis," the researchers found that care is frequently fragmented, treatment is often not based on the latest research, and patients do not routinely receive help in managing their symptoms and the side effects of treatment. Surveys show that the vast majority of Americans would prefer to die at home, as Daniel Siegel did, yet less than a third do. Most of us end our lives in a hospital or nursing home, and a fifth of us breathe our last in intensive care, often after a series of traumatic, futile procedures.
Palliative care is a relatively new field of medicine designed to counter these trends. The goal is to make every patient and family's experience of serious illness—regardless of whether they survive—more like Siegel's, one in which the multidimensional nature of suffering is recognized and addressed. Palliative care nurses and physicians undergo special training in managing symptoms, but the key to their approach is an emphasis on communication with and among the patient, family, and medical team. A variety of individuals make up a typical palliative care team, including doctors, nurses, pharmacists, social workers, and chaplains. Palliative care can be part of the entire trajectory of a patient's illness, even while he is still receiving curative treatment. Hospice, with which palliative care is often confused, is meant specifically for those with a terminal condition who are no longer undergoing such treatment. (The Medicare hospice benefit—which only kicks in during the last six months of a patient's life and does not pay for curative treatment—has made the distinction important.)
Palliative care became an official medical specialty in 2006. Just over a decade ago, very few American hospitals had programs. Now, 66 percent of those with more than 50 beds do; for large hospitals that figure is more than 85 percent, and a number of academic medical centers devote extensive programming and research to it.
Johns Hopkins was not an early adopter. Terry Langbaum, chief administrative officer at the Sidney Kimmel Comprehensive Cancer Center and an early champion for palliative care, says that for many years, Johns Hopkins was "sort of nipping at the edges" of a palliative care program. Small, primarily nurse-run programs existed in isolated pockets, including within the Cancer Center, the Children's Center, and the Department of Medicine. "Even though we were very pleased with what those few people were doing, we knew that was not what this type of institution should be calling a palliative care program," Langbaum says.
It took a decade of persuasion on the part of Langbaum and other advocates, but in 2011, Johns Hopkins Medicine took a big leap forward by bringing on its first director of palliative care, Thomas Smith, now also a professor in the School of Medicine. One of the most renowned palliative care doctors in the country, Smith previously ran a program at the Virginia Commonwealth University Massey Cancer Center. Board certified in internal medicine and medical oncology as well as hospice, he has a gentle, diplomatic manner and the drive of a long-distance runner, which he is. If anyone is likely to make palliative care the norm at Johns Hopkins, it is Smith. But that's a challenge that makes the 50-mile trail run in the Blue Ridge Mountains he recently completed seem like a Turkey Trot. As he and other palliative care professionals minister to individual patients with a wide range of problems, they also are grappling with a system in which providers are rewarded more for aggressive treatment. And then there's that other, much more formidable beast: our culture's strong reluctance to talk about death.Marburg 3, Johns Hopkins' new inpatient palliative care unit, initially feels more like a hotel than a place for the sick. With its hardwood floors, comfortable private suites, and waiters in uniform, the ward is a world away from the hectic intensive care unit, from which some patients are transferred. Marburg 3, which opened in March, only has six beds, but Smith hopes to double that number in the next year or two. The team also visits patients throughout the hospital, conducting 1,000-plus consults a year. And some of these are with patients who, though seriously ill, are nowhere near the end of life. For example, the team holds preparedness planning meetings with many patients receiving ventricular assist devices, mechanical pumps that support heart function (generally in people awaiting heart transplants).
A recent workday began at 8:30 a.m. in a small kitchen off the nurses station. On this particular morning, Smith, the attending palliative care physician, was joined by the chaplain, several nurses, a fellow, and a resident. He passed around a chart. On it were listed the patients in each room, their medical histories, medications, care plans, and problems ranging from thrush to "refusing OOB"—refusing to get out of bed. The discussion that ensued was a rapid-fire exchange peppered with the jargon of medical conditions and pharmaceuticals. Interspersed was talk of other matters, the messy, human sort no drug can cure, such as family members unable to agree on the path forward.
"It's hard," Smith said. "When you get families where everybody's not on the same page, the default in most of U.S. health care is to leave them where they are, invest as little time and effort and angst personally as you can, let them deal with it, and when she dies, she dies. I think it would be wonderful if we got them to some shared moments together to say, 'I love you. I forgive you.'"
Down the hall, an unflappable woman in her 70s with advanced pancreatic cancer welcomed the team into her room. She sat in a reclining chair next to her bed, her hair in a neat bun. She lifted her hospital gown and pointed to a tube protruding from an incision on her abdomen. "Oh boy, they pulled out a lot of fluid yesterday," she said.
"Yes, I think it was 11 quarts of fluid," Smith said. "We took some of the pressure off your stomach so you're not 13 months pregnant all the time." He knelt by her chair and patted her hand. "What bothers you the most?" he asked. There followed what by many physicians' time-strapped standards may seem a rambling conversation. Smith asked about nausea, bowel troubles, anxiety, and other symptoms. He learned that the patient's great-grandson was coming to visit soon, and that she hoped to be out of the hospital by then. There were long moments of companionable silence. After one such pause, Smith asked, "Have you talked with your cancer doctors about what's likely to happen in the future?"
"I don't know what they're saying," the woman said. "Some I can understand and some I don't."
"Mm-hmm," Smith replied. "And what's your understanding right now?"
"As long as my two daughters hear what's going on," she said. "If the doctors tell me something, I like them to be here so they can know, too." Smith nodded, promised to get a nurse to bring the pain and nausea medication she had requested, and the conversation drew to a close. Once out of earshot, he said the patient likely had a month or two to live, at most. "I was just sort of nibbling around the edges to find out how much she wanted to know," he said. "And she wanted her daughters to be there. I really don't want to bludgeon people with information they don't want."Doctors, nurses, and members of religious orders have been attending to their patients' physical, emotional, and spiritual comfort for hundreds of years. Even now, many people who have never heard the term "palliative care" nevertheless provide it. But over the last few decades, new pressures—including life-extending medical advances and ever more precise degrees of specialization—have helped fuel the need for a formal discipline.
The field has its roots in hospice, which first came to this country from Europe in 1974. Not long after, some doctors and nurses began talking about moving the tenets of hospice upstream to patients who were very ill but not on death's door. Smith was part of what he calls the "lunatic fringe" in oncology that promoted palliative care in those early days. "We said, why should you have to wait till the last couple of weeks of life to have your pain and depression and shortness of breath and existential angst addressed?"
By the late 1980s, several pioneering institutions, like the Cleveland Clinic, had started palliative care programs. The field gained steam over ensuing decades and is now, at least conceptually, nearly mainstream. A critical juncture came in 2010, when The New England Journal of Medicine published a study by Massachusetts General Hospital oncologist Jennifer Temel. The study showed that terminal lung cancer patients who received palliative care alongside curative treatment had a better quality of life and lived nearly three months longer than those who received no palliative care. This is despite the fact that they were less likely to opt for aggressive end-of-life care. Given the results of this study and others, the American Society of Clinical Oncology recently recommended that all patients with metastatic cancer receive palliative care early in the course of treatment. A number of studies also indicate that palliative care may help curb expenses. Twenty-five percent of Medicare payments go to patients in their last year of life, and patients who receive palliative care appear more likely to receive hospice referrals and spend less time in intensive care.
In the context of this gathering momentum, Johns Hopkins has committed more fully to palliative care, beyond the hiring of a director. For the last few years, a cross-departmental Nurse Palliative Care Committee has helped spread the gospel on an organizational level. In the education realm, the fellowship program recently received funds to expand; a two-day course on palliative care for all Johns Hopkins nurses is now offered twice a year, and all medical students spend four days concentrating on palliative care and end-of-life issues. Last summer, Patricia Davidson, a researcher in chronic cardiovascular disease and palliative care, became the School of Nursing's dean-designate. She says she considers palliative care "a core competency" and plans to adjust the curriculum accordingly.
But palliative care advocates have been plugging along within the institution for years. In 2000, clinical nurse specialist Rita Moldovan became essentially a consult service of one in a 1,000-bed hospital. Few clinicians had a clear understanding of palliative care in those early days. "That first year, I was called by a nurse to look in on a patient with pancreatic cancer," Moldovan says. "Her physician met me at the door and said, 'Oh, palliative care, she's not ready for that.' And the patient died two days later. That happened often."
The year 2000 also saw the launch of the Harriet Lane Compassionate Care pediatric palliative care program at the Children's Center. Cynda Hylton Rushton, a professor in the School of Nursing and the Berman Institute of Bioethics as well as an internationally recognized expert in palliative care and ethics, says it formed out of an initiative looking into how the center was taking care of dying children. "What we learned was that the staff had some real concerns that we were not doing as well as we could in terms of managing their pain, in terms of talking about issues that were important." Some of the staff felt unprepared to handle certain intractable symptoms, Rushton says, as well as the complex clinical and ethical situations that can arise when children are living with life-threatening illnesses. For example, families with a dying child sometimes feel they are protecting the child by not telling him the truth. "One of the most heartbreaking things is that children know, and often what they will do is engage in a mutual pretense to protect their parents," Rushton says. As a result, they are alone with their worries. "One of my patients wanted to plan his own funeral. He had things he wanted to do," she says. "But if nobody will let him talk about it, what do you do?"
Perceptions of palliative care within the institution have gotten better, according to Moldovan. But for some, the term still evokes the grim reaper. Lynn Billing is nurse coordinator for the Harry J. Duffey Family Pain and Palliative Care Program at the Kimmel Cancer Center, which formed in 2007. She says, "A lot of times, we'll have that initial, 'Hello, we're from palliative care,' and you see this"—she mimics a patient drawing back in horror—"and we'll say, 'Don't worry, we're just here to talk about how you're feeling. We're not going to talk about anything you don't want to talk about.'"
The Duffey program grew out of an existing service that focused exclusively on pain. Named for the husband of a philanthropist who funded the program, the team consists of Billing, a nurse practitioner, two part-time pharmacists, and a part-time physician. Cancer Center social workers collaborate with the team, as does a chaplain. The team sees between five and 10 patients a day, usually at the request of the medical team, though anyone—including a patient—can request their services. End-of-life discussions are rarely the reason the team is called in, but they frequently happen organically. This is partly because the team members have more time to dedicate to each patient than do other physicians and nurses, Billing says. "Palliative care traditionally is designed so we're able to sit down—and that's very important, the part about sitting down—and have conversations," Billing says. "We hear a lot: 'You're the first person who's really listening to what I'm saying.'"Nurse practitioner Catherine Saiki has a particularly personal stake in her chosen field. In 2008, she lost her partner of 13 years to breast cancer. A member of the Cancer Center's palliative care team since last summer, Saiki is grateful for the manner of her partner's passing. After eight years of difficult treatment, much of it palliative, she died peacefully at home, with the support of hospice. "I feel like Deb's death was the closest thing to a miracle that I've ever been a part of," Saiki says. "It doesn't have to happen the way it's happening right now."
Saiki was recently consulted to help a patient with very advanced lung cancer who was experiencing shortness of breath. After suggesting a remedy to her medical team, Saiki stayed to talk with the patient. She learned that the patient was hoping she'd be strong enough to go through another round of chemotherapy, but the treatments she'd already undergone had taken a severe toll. Saiki suggested that hope did not only have to be about survival. "Can you share some of that hope with hoping for a good death?" Saiki says she asked the patient. "To be able to imagine what a good death might be like, in addition to imagining what another six months might look like? They're not mutually exclusive."
"The patient looked at me sort of quizzically," Saiki says, "and said, 'A good death? What is a good death?'" It's a question that rarely comes up in the course of medical treatment. Instead, death often comes at the bitter end of an exhausting succession of increasingly futile procedures. In the absence of other cues—such as advance directives—the default is what surgeon and journalist Atul Gawande has called "the seemingly unstoppable momentum of medical treatment." In his book The Better End: Surviving (and Dying) on Your Own Terms in Today's Modern Medical World (Johns Hopkins University Press, 2011) emergency room doctor Dan Morhaim, a Maryland state delegate and adjunct professor at the Bloomberg School, describes giving CPR to a frail 90-year-old with dementia whose end-of-life wishes were unknown. "Sometimes, when doing CPR, you can feel the ribs snap and crack and then crunch on each succeeding chest compression," he writes.
Tens of thousands of people undergo CPR in a given year, including many with life-threatening illnesses, yet survival rates for the latter group are extremely low. "They're abysmal," says Moldovan. "But patients don't know that." As part of her work, she sometimes shares survival statistics related to procedures like CPR with patients and families.
Some of the push for ever more interventions is influenced by what Smith calls "our deep and abiding desire not to be dead." But he also blames doctors. In a 2012 study of nearly 1,200 patients in The New England Journal of Medicine, 69 percent of those with advanced lung cancer thought that it was at least somewhat likely that chemotherapy could cure their cancer. For patients with advanced colorectal cancer, that number was 81 percent. Chemotherapy at such late stages may prolong life for weeks or months but is not at all likely to cure the cancer. These false beliefs about the effectiveness of chemotherapy, the authors concluded in part, "suggest the need for targeted education to help all physicians learn to communicate honestly." Smith agrees that physicians are not always good at giving clear prognoses, especially when the odds aren't good. "It's really hard looking another human being in the eye and saying, 'I'm sorry, but there's nothing medical science can do to make you live longer,'" he says.
To some doctors, ceasing curative treatment can feel like giving up. "One of the defining features of a good physician is clinical competence," says Rushton. "So if you think that when your patient dies, it's a reflection of your competence, it's hard to go down that road." Medicare also compensates doctors much more for medical procedures than it does for conversations, which—especially when they concern end-of-life matters—can be lengthy. A modest attempt to remedy this led to the furor over "death panels" in the years leading up to the Affordable Care Act.
But, advocates say, when providers fail to initiate end-of-life conversations, they are robbing their patients of the chance to tie up loose ends and make a variety of decisions that could ease their passage and decrease the burden on their families. These include logistical considerations—naming a guardian for children who might be orphaned, drawing up a will, filling out an advance directive—as well as more intangible matters related to one's legacy. "How do you want to be remembered?" Smith asks. "Now is a good time to write notes to people, to keep a journal, to find that box of Polaroids from the 1960s that you might be the only person who knows who those folks are."
It is only after watching a loved one undergo a harrowing series of treatments, cycling in and out of intensive care, that many families discover there is something worse than losing someone you love. There's having someone you love die after prolonged, needless suffering. When seriously ill patients and their families have the opportunity to discuss the implications of a prognosis in-depth, sometimes they choose a different path.
Saiki's lung cancer patient had not discussed with her family the likelihood that she would not survive. "She said that every time she brought it up with her kids they would sort of push it aside: Mom, don't talk like that. You're not gonna die," Saiki says. "Of course, they're trying to protect her and she's trying to protect them." But as Saiki and the patient were talking, the patient's husband came into the room. "[The patient] said, 'We were just talking about where it is that I want to die.' And he said, 'And where is that?'" It was the first time the patient and her husband had been able to plan for the possibility of her death, and to cry about it together. The next day, they decided to sign up for home hospice and let the disease take its course.