By Joanne Kenen
Special to The Washington Post
Tuesday, July 3, 2007
David Thibault grows orchids as a hobby, but the elegant flower on his bedside tray did little to lift his spirits. He stared out the window of his room at George Washington University Hospital, waiting for lab results that could tell him if he had months, weeks or maybe only days to live.
A month earlier, in April, Thibault and his wife, Judy Thibault Klevins, had been preparing for a trip to Japan when he felt pain that was different from the pain he had long experienced from Crohn's disease, an inflammatory bowel ailment. It turned out to be small-bowel cancer. If the disease weren't so rare, he now ventured aloud, maybe more research money would have gone into it, maybe he wouldn't be facing death at age 67.
Joan Panke, a nurse practitioner, listened intently. The coordinator of GW's Palliative Care Service, Panke and her team ease the pain of those with serious or terminal illness. They walk families like the Thibaults through the difficult work of understanding options, making decisions and, sometimes, trying to find a measure of peace as they say goodbye.
About a third of U.S. hospitals now offer some form of palliative care, which adapts aspects of the hospice philosophy without requiring patients to forgo curative care or to have a life expectancy of six months or less. Late last year the American Board of Medical Specialties recognized palliative medicine as a specialized field -- a move that will expand training, said Cameron Muir, a palliative care physician at Capital Hospice, the Washington area's largest hospice organization, and the president of the American Academy of Hospice and Palliative Medicine, based in Glenview, Ill.
Throughout the Washington region, palliative care is also taking root. Interdisciplinary palliative care teams, such as GW's, often devote much of their time to working with the dying -- and helping them face death, a skill that many doctors lack. But as palliative care programs expand and mature, the teams often begin to see patients earlier in the course of disease, creating a continuum of care from diagnosis on.
The main goal is to improve a patient's quality of life. But at the same time, by moving patients out of intensive care -- and even out of the hospital -- sooner and by managing pain, nausea or respiratory problems better, palliative care teams often keep hospital costs down. "We save a lot of money by providing the right care to the right patients at the right time," said Sean Morrison, director of the National Palliative Care Research Center at New York's Mount Sinai School of Medicine.
Not all health economists or policymakers are yet persuaded that those savings are substantial or that they occur in all cases. (Savings, some note, may prove elusive in certain settings, such as cancer clinics.) But Diane Meier, head of the Center to Advance Palliative Care, which is also based at Mount Sinai, said the field's explosive growth shows that hospital administrators see bottom-line benefits.
"Hospital CEOs are voting with their feet," she said. "We are way past the tipping point."
The GW team -- currently two palliative care nurses, a social worker and residents and fellows who rotate through palliative care -- is available to inpatients only. But five of GW's geriatricians also have certifications in palliative care. They use this expertise in their office practices, and they can bring these skills into the hospital when needed.
"There are a lot of conditions that people don't automatically think of as terminal but they have a very poor prognosis," said Katalin Roth, one of those geriatricians. "Metastatic cancer is terminal. But end-stage liver disease, severe congestive heart failure, severe emphysema, these conditions actually have very limited survival and often have worse prognoses in terms of time than cancer."
Panke moves through the hospital sporting a button on her white lab coat that reads, "Actually there is something we can do." She can barely walk 10 or 15 feet across a busy med-surg hospital floor without a doctor's hailing her for advice. At first the requests came largely from the younger doctors, whose training had touched on some end-of-life concerns, but now Panke and her team receive consultation requests from doctors throughout the hospital. Even the psych floor called the other day.
"Everyone thinks we are theirs," Panke said.Tough Choices
In an intensive-care room, a family prayed at the bedside of a man in his 50s. High-tech medicine had saved the patient repeatedly during the years that his kidney disease progressed. He had come into the hospital the previous night as a "full code," meaning he wanted everything possible done to keep him alive, including resuscitation. But his hands were getting cold, his fingertips blue, his pulse weakening despite the tide of drugs being pumped into him to raise his blood pressure.
Panke and social worker Bea Leibson helped the family understand that this was not a temporary crisis. The patient was dying. Alert and communicative, he was able to make choices. He and his family decided he should stay on the blood pressure drugs for as long as they worked, as long as he was comfortable. But when the drugs failed, there would be no rib-crushing attempt at resuscitation, no machines that might possibly extend his life for hours or days but would prevent him from sharing last words with his family. With the help of Panke and Leibson, and a hospital chaplain, he died peacefully with his family at his side that evening.
Lana Baueserman, 58, had come to the hospital four days earlier with back pain that turned out to be a fast-moving pancreatic cancer. Overwhelmed, Baueserman took her pain drugs and retreated into sleep, while her sister Wanda Reyes kicked into high gear. A lawyer made sure she was empowered to make health-care and financial decisions on behalf of her sister if necessary. Reyes planned to move into her sister's home to take care of her; hospice will help. "My condo is on the third floor, lots of stairs," she said. "Lana's house is better. And she's got a screened-in sun porch; I can take her out there."
But for all her take-charge efficiency, Reyes was reeling. "Things are moving too quickly," she said. She gestured at Panke and Patricia Ladisa, a resident rotating through the palliative care service. "I couldn't get through this without them."
Not all patients receiving palliative care are this sick. One 72-year-old woman said she "sailed through" her double mastectomy a year ago. Chemo was tougher, causing severe neuropathic pain syndrome affecting her hands and feet. The pain persists. "This is real. I haven't been able to button a blouse for a year," said the woman, who lives alone in Northwest Washington and asked that her name be withheld because she hasn't confided in her co-workers. When she went to one local emergency room, she said, the staff "told me I was a drug addict looking for morphine" and sent her home untreated. Finally she landed at GW.
Panke had started the patient on a new mix of drugs but would have to titrate the medications over several days to avoid side effects. The relief might be modest at first. The patient voiced some skepticism about the outcome but said she was relieved that Panke was listening more than her oncologist had.Humor and Resignation
People often associate palliative care with cancer, but Panke and Leibson see all kinds of diseases and all kinds of family dynamics. They recently treated a middle-aged woman with advanced AIDS whose family wasn't ready to "give up" on the daughter from whom they had long been estranged but who could no longer communicate with them. A diabetic woman spent weeks in the ICU, her will to live gradually sapped by a rare "flesh-eating" bacteria.
A 12-year-old boy, struggling to understand why dialysis could no longer keep his father alive, reflected on how fast he outgrew his sneakers. "I'm the size of a man -- size 11. I don't want my feet to grow any more," he said, unaware, perhaps, of how well his imagery called up his preparation to step into his father's shoes as the man of the family.
Under Panke's care, Thibault was feeling a bit better this morning. He had been distraught when an overnight nurse didn't come quickly to refill pain medication; Panke switched him to a pump he could control himself. The nausea drugs worked; Thibault ate his first meal in days, so he was now less at risk for dehydration and kidney failure. When Panke asked if he needed anything for a dry mouth, he joked: "Beer."
Panke still worried about the emotional strain on the couple, but Thibault Klevins called her the "ray of sanity" illuminating their choices. Thibault was trained as a scientist, worked as a businessman and was trying to be dispassionate, analytical. He would not grasp for miracles; he will opt for hospice. He wants to die at home, with his family, among his orchids. ·
Joanne Kenen has a media fellowship from the Kaiser Family Foundation to report on hospice and palliative care. Comments:firstname.lastname@example.org.