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Concord Monitor COPING WITH CANCER: Hooksett, NH – Clinton Jones of Goffstown had wanted to die at home. But when he came out of the hospital for the last time, his body wracked with colon cancer, Leslie Glines-Jones, his wife of 26 years, knew she couldn't take care of him physically and be there for him emotionally, too. "I had to basically be honest with myself and decide, could I handle this?" Glines-Jones, 62, said. "I knew if I took care of him physically, I wouldn't be able to do both, and I felt that the emotional side was the most important." So she decided to move him to the Concord Hospice House for the last week of his life. She visited him around the clock, and their children and black Labrador, Bill, came to visit too. She consider it the best decision she made. New Hampshire Oncology-Hematology has joined a clinical trial to look at choices like this one, in order to better understand the psychological aspects of advanced cancer. The study hopes to get at what many doctors don't know - what it feels like to care for a dying parent or spouse -and what none of them can know - what it feels like to prepare for death yourself. The center's first-ever psychological study will interview terminal cancer patients who have about six months left to live and the person who will be in charge of taking care of them. Researchers will then follow up to see if the patients' wishes were carried out. They'll also interview the caregiver again six months after the patient has died to see how he or she is coping. The idea is to try to pick up on mental health issues, like anxiety and depression, and discern which kinds of decisions bring about a sense of calm, closure and fulfillment and which lead to chaos, stress and grief that spirals out of control. "We're trying to understand what's going on," said Dr. Holly Prigerson, who is running the study at the Dana-Farber Cancer Institute in Boston. So in the last few months of life, when it's not about finding a cure anymore, it's about giving them the most comfortable death. For people who die better, the caregivers have a better six-month follow-up." So far, 50 patients from New Hampshire Oncology-Hematology have signed up for the trial, said Dr. Bob Friedlander, an oncologist with the group. About 250 patients are expected to sign up within the next year. Jones was diagnosed with colon cancer in 2003 and began chemotherapy in April of last year. By last August, he decided the chemo was just making him sicker, and he stopped taking his treatments. He and his wife planned for his memorial service and talked about whether Glines-Jones would sell the house (she didn't) and keep the dog (she did). But they didn't ask for any predictions about how long Jones would live. They didn't want to know. "We didn't want to have that in our minds, because we felt very strongly we might put too much energy into that instead of into living," said Glines-Jones. Instead they took trips to Florida and to the Native American museum in Washington, D.C. When he died in January, Jones's memorial service was just as they had planned, with Native American drummers (he was a quarter Native American) and T-shirts decorated with a feather, a fish and a stalk of wheat. Jones's own quotation was on the back: "Love life, challenge the warrior within." Glines-Jones can't think of anything she would have done differently in her husband's final days. At every stage, her husband decided what to do about his treatment, and they hadn't asked for much advice. "I think there were just a couple of times during this whole three-year period when it hit him like a brick-wall, but other than that he was very matter-of-fact,"she said. But watching her husband's decline was emotionally hard on Glines-Jones, too. "People would come up to me, and ask me how I was doing, and at that point I was doing okay because I was with someone, but it wasn't always okay," she said. "Clinton always put on a good face outside, no matter who he met or saw, and then he'd come home, and he'd just be totally wiped out. So people would come to me and say, 'Isn't he doing so great,' and I'd say, 'Yeah, he is,' and the back of my mind I would think, 'You didn't see him last night or this morning, when he could barely get out of bed.'" Jones's doctors were nice, she said, but she wasn't their first concern. They generally asked her how she was doing, but she was there for Jones, and no one had time to really sit down and talk with her. "They're concerned about the patient's mental health and their physical health, but there's a whole other section of that person. I was an extension of Clinton in a way. I am my own person, but we were a couple," she said. "It's the man I loved." The study hopes to better understand what people like Glines-Jones are going through. Friedlander of New Hampshire Oncology-Hematology said having data on their experiences will make it easier to put programs in place to help them out. "In this day and age, we are encouraging people with advanced cancer to spend the final months and weeks at home, and the vast majority are dying at home, he said. "What we're literally doing is, asking family members who by and large have no experience in the medical field to do an extraordinary thing, which is care for someone who is dying at home." He added: "If it turns out that a significant percentage of caregivers are developing mental health problems, it's really a public health issue." For the cancer patients, the study may also identify problems of anxiety and depression, which may look much different in a terminally ill patient than a healthy one. "We're looking at what is mental distress in the end of life," said Prigerson of Dana-Farber. "It's not straight clinical depression; it's all about existential stuff. It's more about life-review and what they've done." When her own father was sick with pancreatic cancer, Prigerson said he would wake up with night sweats. They figured out he was having anxiety problems and put him on a traditional anti-anxiety drug. It did the trick. When patients have calm, organized deaths, it makes the grieving easier, Prigerson said. Caregivers are less likely to spiral out of control themselves, gaining or losing large amounts of weight, relying on alcohol, or struggling with severe depression. By her own account, Glines-Jones has had a pretty steady period of grief. She's back at her job and able to go through the daily tasks of her life. She doesn't imagine she'll remarry and has a sense of closure about her husband's death. But it still creeps up on her sometimes. Two weeks ago she took the dog, Bill, to the vet for the first time since Jones died. That had been her husband's job. He and the vet had been friendly, and the vet didn't know Jones had died. "You think the mourning is all over, until something like that happens, until it all comes up again and you're trying to console someone else who's just hearing the news," she said.
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