Fatally Ill, and Making Herself the Lesson





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,” Ms. 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 Ms. 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,” Ms. Keane said.


So it was that a few weeks later, two first-year nursing students, Cindy Santiago, 26, and Michelle Elliot, 52, arrived at Ms. 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,” Ms. Keochareon said. The students hesitated, saying 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, O.K., bye,” as Ms. Santiago put it — was different, after all.


They had come with a list of questions. Ms. 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 give her a diagnosis?


“They ask good questions,” Ms. Keochareon said one morning, her lips stained red from the liquid oxycodone she was sipping frequently 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 Ms. 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 Ms. 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. But Ms. Malloy said that 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 Ms. 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. Ms. Keochareon was 53 and working at a hospital in Charleston, S.C. She was told that she would probably die within a year or two.


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