Date: September 1, 2012
By the time she found her way to someone who knew about palliative care, Louise Bianco Moyer was in a desperate state. Her husband, John Moyer, was fighting a long, brave battle with two primary cancers—the first, in his kidney, appeared in 2006, while the second, in his rectum, showed up in 2010. A facilities engineer at the Patuxent Naval Air Station in Southern Maryland, John was faring tolerably well when things took a turn for the worse in mid-2011. His weight ballooned, and he was soon carrying more than 300 pounds on his stocky, 5-foot, 8-inch frame. Of even more concern was the pain shooting down John’s legs; over time, it became so excruciating that it left him all but incapacitated.
The guy Louise had fallen in love with was a larger-than-life figure. “If you walked into a crowded room where you didn’t know anybody, John’s the guy you’d notice right away,” she says. “He was just filled with the joy of living. He had a huge appetite for everything human—food, fun, sex, friends.”
The John before her now was a shadow of that man. At just 48, he had none of the joy that so defined his healthy life. Every ounce of his strength was spent grappling with that pain in his legs; he had nothing left in reserve.
No one was able to help. Specialist after specialist in multiple hospitals ran test after test. Time and again, they failed to find a cause for John’s woes. “It looks like your husband is fine—we can’t find anything wrong,” said the doctors.
When Louise Moyer recalls such moments, her voice shakes in tears one moment, then rises in anger the next. She was certain the experts were wrong, but everything she tried or suggested added up to nothing more than grasping at straws.
Louise has a sister in Michigan who’s a nurse, and she mentioned the possibility of palliative care—a fast-growing specialty that is focused on providing value-added treatments and services that aim to help patients feel healthier and live fuller lives even while they battle serious disease.
After her husband became an inpatient at Johns Hopkins Hospital, Louise asked about palliative care but was told at first that the service was unavailable (and indeed, at that point, the service was only available in targeted wards). A short while after that Louise found herself meeting with Rhonda Cooper, the chaplain at the Sidney Kimmel Comprehensive Cancer Center.
“I told her everything, the whole incredible story of all the things we’d been through and why I just didn’t trust anybody anymore,” Louise says. “Rhonda just sat there with me, listening, and the whole time the tears were just pouring out of me.”
Cooper remembers the encounter clearly. “Some people think chaplains only get called in when someone is about to die, but that’s a misconception,” she says. “Most of my work is with people who are in distress. Not just patients but also spouses and other family members, and staff as well. What I try to do at first is just listen very deeply to what they’re willing to share.”
Cooper was surprised to hear Louise complain that Hopkins didn’t offer palliative care. “I said, ‘Oh yes, we do have palliative care here,’” she recalls. In fact, Cooper herself is a part of the interdisciplinary team providing care at Kimmel as the Harry J. Duffey Family Pain and Palliative Care Program.
Cooper reached out to her colleagues on the Duffey team, and the next day a physician and nurse arrived to consult on John Moyer’s case. “We found a person in terrible pain—John was just miserable,” says the nurse, Lynn Billing.
Moyer’s other physicians had been uncomfortable about increasing his doses of pain medicine past a certain point, but the palliative team recommended that they try doing just that. They converted the pain medications he had been receiving to an intravenous hydromorphine, Dilaudid, and they escalated the dosage until Moyer’s comfort level increased.
Within a few days Moyer was planning a bass-fishing trip with friends—in Florida. “I cannot even begin to say what a difference they made in my life—and in my husband’s life,” Louise Moyer says. “I finally had my husband back again.”
While palliative care can trace its roots back centuries to the work of religious orders in Europe, the modern incarnation of the field dates only to the late 1980s. That’s when Cleveland Clinic and the Medical College of Wisconsin began dipping toes in patient-care waters, inspired by the hospice movement but no longer limited to patients who are knocking on death’s door.
The field has been growing rapidly ever since. Lynn Billing is the nursing coordinator on the Duffey team at Hopkins. When she first attended the annual conference of the American Academy of Hospice and Palliative Medicine, there were about 500 colleagues in attendance—that was in 2005. This year’s conference drew seven times as many.
The national Center to Advance Palliative Care has tracked the spread of the specialty into hospital settings. By 2000, roughly one in four U.S. hospitals had started some sort of palliative care initiative; 10 years later, that had climbed to nearly two out of every three hospitals—some 1,600 institutions.
But the field still has a way to go. One sign of just how far is the way some medical professionals still seem a little unclear about what, exactly, palliative care is. The Duffey program has been up and running for five years now, but on occasion the team still encounters misconceptions.
“The most common is that we’re only about end of life, or that palliative care and hospice are one and the same,” Billing says. “We hear from colleagues—‘No, this patient isn’t ready for you.’ Our response is, ‘We want to be helpful,’ and we start by meeting the patient and family where they are.”
The dictionary describes a treatment as palliative when it’s aimed at symptoms rather than a disease. So in one case a palliative team might work alongside an oncologist to reduce pain and ease nausea through a chemotherapy regimen. In another, the team might treat a patient’s depression or help him navigate the spiritual crisis that arises so often in serious illnesses. Then there are cases where the team is focused on making sure patients are able to manage the home environment and thrive as outpatients.
The palliative toolbox, then, includes the skills of physicians, nurses, pharmacists, psychiatrists, chaplains, social workers, and more. This array is quite similar to the toolbox used in hospice—the key difference is that palliative care advocates have their sights set on helping patients not just when death is imminent but throughout the course of a life-threatening illness. They’re taking hospice concepts and pushing them “upstream.”
A 2010 study at Massachusetts General is often cited to demonstrate the potential of the field. There, researchers randomized 151 patients with metastatic non-small cell lung cancer into two groups at the time of diagnosis—one group got standard oncology care, while the other received palliative care in addition. The palliative patients experienced the boost in quality-of-life measures that such care is designed to deliver—less depression, less pain, fewer complications. They also lived on average almost three months longer than those in the control group. The results helped convince the American Society of Clinical Oncology to issue a formal recommendation last year that diagnosis is the right time to start delivering palliative care to such patients.
At Hopkins, the first palliative care initiative sprang up as a small consult service in the Department of Medicine in the late 1990s. Then came the Harriet Lane Compassionate Care program at the Children’s Center, which started as a staff educational initiative. Later, the Duffey program at the cancer center grew out of an existing pain service; it, too, is structured as a consult service giving recommendations to care teams.
These efforts tended to be small and underfunded, says Terry Langbaum, chief administrative officer at the Kimmel Center and a longtime champion of expanding palliative care at Hopkins. “Over time we became an outlier among academic medical centers,” she says. “In a field that was young but growing and obviously catching on everywhere, we were falling behind. That’s not supposed to happen here—we’re Hopkins.”
That began to change late last year when Thomas Smith was named the first-ever director of palliative care for Johns Hopkins Medicine. He arrived in East Baltimore from the Virginia Commonwealth University School of Medicine (formerly the Medical College of Virginia), where he had established himself as one of the nation’s foremost experts in the field. His appointment marks the first full embrace of the young specialty at the institutional level.
On a recent Thursday afternoon, Smith joined with 15 of his colleagues as they squeezed into a small conference room just off the lobby of the Kimmel Center for a meeting of the weekly Multidisciplinary Cancer Pain Conference.
The case that dominated the meeting involved a woman with metastatic melanoma who’d endured multiple recent hospital admissions. The animated discussion was focused on how to ease the woman’s pain to the point where she could stay at home for an extended stretch with her husband and grade-school-age child, without bouncing back into the hospital.
A key strategy under consideration is one that’s been highly successful in such cases—delivering pain medications directly into the spinal fluid. The team also discussed a number of symptoms beyond pain, including depression, shortness of breath, and fatigue, among others.
As the discussion wound down, Smith raised a hand in the air and moved the subject to the woman’s long-term prospects. Asking about prognosis, he learned that the patient is likely to die in the window of six months to one year.
“Has anyone been in yet to say, ‘What do you want to know about what’s going on with your illness and where things are headed?’” he asks. “If she wants to know more, this is the time to be honest. It’s going to go a lot better if we do that now so that she and her family can get to thinking about it sooner, not when she’s at death’s door. Can we help her get started with a life review? Maybe she’ll want to write things down for her child.”
Trained as an oncologist, Smith knows from experience that in treating patients suffering from a deadly disease, there can be lots of seemingly sound reasons to steer clear of frank discussions about a bleak prognosis. Is this patient at risk for depression? Does that one seem likely to give up the fight altogether? Is a third dependent on the support of family members who might not be able to handle the news?
“It turns out that it’s a bit of a myth that oncologists like me actually sit down with patients at some point and have these ‘big’ conversations,” he says in an interview. “Some of us do, but a lot of us don’t.”
That’s not just an anecdotal impression. Smith cites one study in which researchers looking back over patient charts found that such “big talks” happen in just one of five cases where the patient is likely to die. Smith cites another study at one academic medical center, where in just two of 85 such cases did oncologists raise with patients the topic of preparing advance health care directives to guide care.
In that sense, there’s a bully-pulpit aspect to the job at hand for Smith and his colleagues. Hopkins is built upon the curative power of medicine. While the growth of palliative care doesn’t change that goal, it does ask physicians who are often strapped for time and resources to deliver Hopkins-level excellence along a parallel, palliative path.
“It’s a major leap in this institution,” says Langbaum. “Our docs can always pull some rabbit out of a hat. You know, if this treatment fails we have that treatment and if that fails there’s a third and after that there’s a clinical trial. They’re scientists, and their focus is on curing the disease.”
Smith points to a series of research results showing that the fears clinicians have about “big” talks are misplaced. The vast majority of patients with deadly diseases tell researchers that they’d prefer it if caregivers spoke early on and frankly with them about their prognosis.
Smith himself helped conduct a study that found that in the absence of such discussions many patients came to believe their prognosis was worse than it actually was.
“We also measured their sense of hope—it’s the first time anybody studied that around a prognosis,” Smith says. “And the level of hope those patients felt about their future didn’t diminish after they had all the facts—it either stayed the same or went up a little bit. And depression is far less likely when we have these discussions, for both patients and caregivers.”
“When this doesn’t happen,” Smith says, “that’s how we end up in these worst-case scenarios where we have patients we know are going to die, but we end up giving them no chance to prepare before they end up in intensive care, hooked up to blood pressure support and suffering from things like delirium and other complications.”
Such deaths are more costly than they should be on just about every front. Patients miss out on opportunities to savor priceless moments, whether that’s making amends with an estranged sibling, confiding in a minister, or dying at home with loved ones close at hand.
Those loved ones miss out on such moments as well. And, Smith notes, they find themselves in the aftermath of their loss at higher risk for depression and post-traumatic stress compared with families whose loved ones receive palliative and hospice care. Hospice families are also less likely to go bankrupt, Smith says, and surviving spouses are less likely to die in the aftermath of their loss.
The health care system loses out as well. Deaths are much more expensive in intensive care than they are in hospice. Here, Smith cites a test project by the insurance company Aetna to deliver palliative care alongside standard treatment in terminal cancer cases: The costs of care in the last 40 days of life dropped by 22 percent, primarily due to reduced hospitalizations.
“No one got into this field with the first thought in their mind being that it might be a great way to save money,” Smith says. “But the fact that palliative care allows people to live longer and live better while also saving money—that’s obviously a good thing considering what’s going on with costs in the U.S. health care system.”
Concrete plans are now in place for the expansion of palliative care at Hopkins. An inpatient palliative unit is slated to open next year on Marburg 3, Smith reports, that will serve patients in need of symptom “tune-ups” as they’re discharged from the emergency room or intensive care. At the Children’s Center, palliative care experts are in the midst of business planning and developing a campaign to seek philanthropic support for the expansion of such care there.
As medical director of the Harriet Lane Compassionate Care program at the Children’s Center, Nancy Hutton is often called in to consult on cases where children have a bleak prognosis. Whether they are likely to die in a few months or over a longer time frame, the care she delivers often tends to be as much focused on the arts of communication and compassion as it is on clinical recommendations.
In a recent case, Hutton watched as a young mother hoping for good news received instead the worst possible report from her child’s doctors. In the weeks that followed Hutton and other palliative caregivers made a series of home visits that helped build a foundation of knowledge about the family’s circumstances and trust with the child’s mother.
“Part of what I did with the child’s mother privately at the bedside is say things like, ‘There’s going to come a time when someone’s going to ask you really hard questions, and you need to think about what your answers are going to be,’” Hutton says. “There’s going to come a time when the stomach isn’t working anymore. There’s going to come a time when seizures are out of control. I told her, ‘We’re not there today, but there’s going to be a day when you’re asked whether your child should stay on the breathing machine.’”
The Compassionate Care program developed along a path that’s unusual in the field. Most palliative services start out on a consult model like the Duffey program at the Cancer Center. The Lane program dates its history to 1997, but direct consultations on cases began only three years ago.
“The first thing we did was to conduct a needs assessment, and the thing we learned is that our clinicians were suffering a lot around these issues of end-of-life care,” says Program Director Cynda Rushton. “There was grief and moral distress.”
Often, Rushton adds, such distress revolves around heart-wrenching questions that arise in cases where children are not going to survive their illnesses. What should the primary goal of treatment be? Are we striking the right balance between trying to extend life for days or weeks and trying to boost quality of life so that families can make the most of their remaining time with the patient? Occasional disagreements among caregivers around such questions are inevitable—and the high stakes involved can generate emotional tensions.
So, at first palliative care efforts at the Children’s Center focused on staff more than patients. The center’s volunteer-driven Compassionate Care Leadership Council initiated a new series of palliative care rounds on units where staff dealt most often with deaths. The council made it easier to convene conferences that put the entire range of caregivers at the table to discuss goals of care and debate treatment options. And they developed a new system of debriefing sessions for staff with the center’s bereavement counselor in the wake of patient deaths.
“Over time there was a genuine change in the air,” Hutton says. “Before, it was like the ‘wounded healer.’ There were professionals here experiencing loss and doubt without ever acknowledging it to themselves or anyone else. After, there were more open conversations about the fact that children here can have a bad prognosis. It became safer to talk and debate about the best things to do when that’s the case.”
That groundwork helped the field build up credibility, so much so that it was the Children’s Center staff who came to the Leadership Council and requested that it create a consult service. That service began operating in 2009, but is not yet funded in ways that would provide 24-hour access, as well as outreach to patients during clinic visits and at home.
“There isn’t so much of that misconception anymore that this is about hanging crepe,” Hutton says. “People see that it’s about doing our best to help families enjoy a child for every moment that they have together.”
John Moyer spent most of April and May of this year back home, his pain lessened and his outlook improved. Looking back, his wife cherishes every moment of those calmer weeks after all of the time spent bouncing in and out of hospitals.
The Moyers came into Hopkins on June 4 to discuss a planned surgery to ease some digestive blockage John was experiencing. Instead, the couple found themselves meeting with nurse Lynn Billing in a private room. There, Billing reviewed the latest report from John’s physicians, explaining that his cancer had exploded and was now out of control.
“She said he had about three weeks left, and he died three weeks and three days later,” Louise Moyer says.
Later that day, Billing spent two and a half more hours with the Moyers, first with both husband and wife and then with Louise alone. “She had such a marvelous way of presenting what we needed to do on the next step,” Louise recalls. “It wasn’t like we were giving up—we were shifting our focus and we were going to spend our energy to die well.”
John died on June 28, assisted by a hospice program in Southern Maryland. In the wake of her experience, Louise has become a strong advocate for palliative care.
“We live in a society where no one wants to talk about death, and when you think about it that’s the one thing we all have in common,” she says. “The people in palliative care aren’t afraid to talk about it. Lynn and Dr. Smith just made such a difference in his life, and in our lives.” *