New York Times
POSTED: 1:30 a.m. HST, Jan 11, 2013
SOUTH HADLEY, Mass. » It was early November when Martha Keochareon called the nursing school at Holyoke Community College, her alma mater. She had a proposal, which she laid out in a voice mail message.
"I have cancer," she said after introducing herself, "and I'm wondering if you'll need somebody to do a case study on, a hospice patient."
Perhaps some nursing students "just want to feel what a tumor feels like," she went on. Or they could learn something about hospice care, which aims to help terminally ill people die comfortably at home.
"Maybe you'll have some ambitious student that wants to do a project," Keochareon (pronounced CATCH-uron) said after leaving her phone number. "Thank you. Bye."
Kelly Keane, a counselor at the college who received the message, was instantly intrigued. Holyoke's nursing students, like most, learn about cancer from textbooks. They get some experience with acutely ill patients during a rotation on the medical-surgical floor of a hospital. They practice their skills in the college's simulation lab on sophisticated mannequins that can "die" of cancer, heart attacks and other ailments. But Keochareon, 59, a 1993 graduate of Holyoke's nursing program, was offering students something unique: an opportunity not only to examine her, but to ask anything they wanted about her experience with cancer and dying.
"She is allowing us into something we wouldn't ever be privy to," Keane said.
So it was that a few weeks later, two first-year nursing students, Cindy Santiago, 26, and Michelle Elliot, 52, arrived at Keochareon's tiny house, a few miles from the college. She was bedbound, cared for by a loyal band of relatives, hospice nurses and aides. Both students were anxious.
"Sit on my bed and talk to me," Keochareon said. The students hesitated, explaining that they had been taught not to do that, to prevent transmission of germs. What they knew of nursing in hospitals — "I'm here to take your vitals, give you your medicine, OK, bye," as Santiago put it — was different, after all.
They had come with a list of questions. Keochareon was suffering from pancreatic cancer, and they had researched the disease ahead of time. They were particularly curious about why she had survived for so long. She had lived with her illness for more than six years — an extraordinary span for pancreatic cancer, which often kills within months after diagnosis.
Why, the students asked, had she managed to keep eating and keep on weight? What was she taking for the pain? How long had it taken for doctors to diagnose her?
"They ask good questions," Keochareon said one morning, her lips stained red from the liquid oxycodone between doses of other drugs. "I forget half the stuff I learned as a nurse, but I remember everything about pancreatic cancer. Because I'm living it."
For Keochareon, this was a chance to teach something about the profession she had found late and embraced — she became a nurse at 40, after raising her daughter and working for years on a factory floor.
"When I was a nurse, it seemed like most of the other nurses were never too happy having a student to teach," she said, lying in her bedroom lined with pictures of relatives, friends, and herself in healthier times. "I loved it."
A LAST PROJECT
Now, her disease had left her passing the days watching Animal Planet, reading a book about heaven and calling friends — so much that her cordless phone never left her side. She also was planning meticulously for her death, down to the green wool cardigan and embroidered shirt she would be buried in. But Keochareon wanted more as she prepared to die. The project she envisioned would be not just for students, but also for her — a way to squeeze one more chapter out of life.
Spending time with the dying is not fundamental to nurse training, partly because there are not enough clinical settings to provide the experience. The End-of-Life Nursing Education Consortium, a project of the American Association of Colleges of Nursing, has provided training in palliative care to some 15,000 nurses and nursing instructors around the nation since 2000, focusing not just on pain management but also on how to help terminally ill patients and their families prepare for death.
In addition, some students do rotations with hospice nurses, said Pam Malloy, the project's director. Malloy said nursing schools still do not focus on end-of-life care nearly as much as they should. "We live in a death-denying society, and that includes nursing," she said. "People have begun to understand it's important, but we're nowhere where we need to be at this point."
In their conversations with Keochareon, the students learned that her symptoms had included a burning sensation after eating, for which doctors prescribed an acid blocker. Then came wrenching abdominal pain, which she said doctors dismissed as psychosomatic. She also developed diabetes, another potential sign of pancreatic cancer, and itchiness, possibly from blocked bile ducts.
In 2006, after she had felt sick for several years, a doctor finally ordered a CT scan, and the cancer was diagnosed. Keochareon was 53 and working at a hospital in Charleston, S.C. She was told she would probably die within a year or two.
Santiago and Elliot were outraged on her behalf. But they were surprised, they said, to learn that instead of anger or shock, the first emotion Keochareon felt after her diagnosis was relief because she finally knew what was wrong with her.
The best advice she could give future nurses, Keochareon said in her reedy voice, was "to just dig a little deeper — you know?"
Keochareon — who had several unhappy marriages before finding her current husband, Joe — also offered some personal advice. "Don't yell at each other unless the house is on fire," she told the students.
Perhaps more than anything, the students were learning about the challenge of managing late-stage cancer pain in a patient who had outlived her prognosis. Keochareon's cancer had spread, and there were tumors in her bones and around her throat. By early December, the pain had grown unbearable; Keochareon was hospitalized for nearly a week while doctors assessed how to control it.
‘LET THE PATIENT TALK'
At her request, the students kept visiting. The sessions provided a brief respite for Keochareon's caretakers, including Roy Christensen, a cousin who moved back from Texas last year to help, and Peggy Casey, her favorite aunt. Seeing their exhaustion, the students learned another lesson: "The patient isn't Martha per se," Keane said, "it's the entire family."
At Keane's urging, the students eventually stopped asking questions and practiced what she called "therapeutic communication" instead.
"The way we've learned in school, and haven't applied enough, is just saying, ‘I'm glad to be with you; you must be frustrated; you look uncomfortable,"' Keane said. "And let the patient just talk and talk and talk, and see where they're at."
On a bright day shortly before Christmas, Keochareon had less to say than usual as Santiago perched on her bed.
"You look good," Santiago said softly after they had chatted for a bit. Keochareon was clearly in pain; she mustered a brief smile and closed her eyes.
"I'm ready to go," Keochareon told her, opening her eyes again.
Santiago paused. "Aw," she said, patting Keochareon's hand. "Well ..."
"Don't feel bad," Keochareon added.
"I know," Santiago said, shaking her look of concern into a smile. "I know."
She wept after leaving the room. Her father has prostate cancer that has spread, she said; Keochareon's declaration had left her thinking about him.
"I kind of wanted to break down," she said. "I know I'm going to get there with my dad eventually."
Santiago said she was afraid of death. Elliot, having seen it in her job at a local hospital, was less troubled by it. She is a licensed practical nurse who is pursuing a registered nurse degree to advance her career. Still, Elliot said that when her 81-year-old mother recently asked if she would accompany her to a funeral home to "pick stuff out and get everything ready," she recoiled.
The new drugs that doctors had prescribed during Keochareon's hospital stay failed to keep the pain at bay. She was trying another combination when Santiago visited again, shortly before Christmas, but with little relief. Santiago watched, arms tightly crossed, as Keochareon grimaced and moaned.
"In school they always teach us that pain management is the biggest thing — like, you know, we have to treat the pain," Santiago said. "With her it's like, how do you treat it? Like, you've tried everything. What else is there to try?"
She rubbed an anesthetic gel on Keochareon's back and, with Keane's help, tried to position her hospital bed to be more comfortable. Sunlight streamed through the window into the small, warm room; birds flitted around a feeder just outside. Keochareon briefly felt better and wanted Santiago to see her portfolio: a binder that contained her resume, nursing licenses and letters of recommendation.
Learning from books was good, she said; learning from patients was better.
"When you look back," Keochareon said, "you associate a certain person with a certain diagnosis."
Santiago planned to return two days later. But Keochareon seemed to be saying goodbye.
"I'm sorry I went downhill so fast," she said. "I thought I could teach more."
RUNNING OUT OF TIME
Later that afternoon, Christensen, her cousin, called with an update. Keochareon had asked for an intravenous sedative that would make her sleep, delivering her from the mounting pain. That morning's visit, it turned out, had been the last.
Elliot, who had planned to visit Keochareon after her shift that day, regretted not having asked more about how she felt about death.
"She already seemed to be at that spot where she had that inner peace about it," Elliot said. "You want to ask them the questions: So what does it feel like to be dying? Do you know something we don't know?"
Keochareon died nine days later, in the evening on Dec. 29. Christensen had asked her to wait for snow; nearly 6 inches fell that night, the first of the season. Only her husband was there for her death — a consequence of the weather, but perhaps also part of her plan, Christensen said.
At the funeral, Keochareon's sister Ruth Woodard spoke in her eulogy about "just what prompted Martha to offer her situation up as a teaching tool." Keochareon deeply wanted nurses to understand her illness from the patient's perspective, she said. But that was not all.
"I notice that every time that Martha gave of herself she received far more," Woodard said. "In fact, she received a few moments of less pain and I suspect that she received life itself — a few more hours, even days, with purpose."
When the new semester starts this month, Santiago and Elliot will return to more conventional coursework: a pharmacology class, for example, and rotations in maternity and acute care. But they will also present to their classmates what they learned in the little house in South Hadley. Santiago said she would remember Keochareon "until the day that I die" — especially her resolve.
"Who in her situation, to be like that, would call up and say, ‘Hey, I want to teach a student about my cancer?"' she said.