By Jenifer Goodwin
July 9, 2012
Dying patients face their final days better if they are not in the hospital, not on a feeding tube or chemotherapy and feel that they have a trusting relationship with their doctor, a new survey of terminally ill cancer patients reveals.
Other factors that helped them find peace in the end, the survey showed, were prayer, meditation, a pastor’s visit and freedom from excessive worry or anxiety.
The survey involved about 400 U.S. patients with advanced cancer who were told they had less than six months to live, and their closest caregiver, usually a spouse. The cancer patients, whose average age was 59, were surveyed an average of four months before they died. Their caregivers were then surveyed about the end-of-life experience.
Several factors determined how the patients and their caregivers rated their quality of life at the end. Among the most important: not dying in the intensive care unit or hospital; not having to endure aggressive, life-prolonging treatments at the end, such as feeding tubes or chemotherapy; and feeling their doctor saw them as a whole person and treated them with respect, said lead study author Holly Prigerson, director of the Center for Psychosocial Epidemiology and Outcomes Research at Dana-Farber Cancer Institute in Boston.
“What the results suggest is that attention to patients’ psychosocial needs, their spiritual needs, their comfort, their worries, their need to not be abandoned by their health care team and to feel valuable and significant are the things that matter most to the patients and their families,” Prigerson added.
“It’s not . . . how much chemo or what procedures are performed or heroics. In fact, it’s the opposite. It’s the human connection that seemed to be the most important [for] good quality of end-of-life care,” she said.
The research was published online July 9 in the Archives of Internal Medicine.
Oncologists tend to focus on curing patients, but many are less comfortable dealing with end-of-life issues, the experts said. The findings show that even when a cure is no longer possible, patients still want to know their doctors care.
“When patients aren’t curable anymore, a lot of physicians feel there is very little they have to offer their patients, but what these results suggest is the opposite,” Prigerson said. “In fact, physicians are one of the most important influences on the quality of life of their patients — by being there, being emotional available, being present and not emotionally abandoning someone because you can’t cure them of their cancer.”
Alan Zonderman, a senior investigator at the U.S. National Institute on Aging, said the study is important because it includes actual data, rather than anecdotes, about what matters to patients and their families at the end of life.
“It means that we can give physicians some real guidance based on some genuine evidence from patients and people who are truly close to the patient,” said Zonderman, who was the co-author of an accompanying editorial in the journal.
The findings also illustrate how important it is for physicians who treat cancer patients to be able to “shift gears” and focus on the quality of a patient’s last days when a cure is no longer possible, said Dr. Michele Evans, senior scientist and deputy scientific director at the U.S. National Institute on Aging.
Having that conversation isn’t easy, Evans added. “We’re good at telling patients: ‘The nausea, the hair loss, the vomiting, it’s worth it, because we are going to get you to a cure,’” Evans said. “But in the course of some diseases, we are not going to get there.”
That’s when it’s important for physicians to have a strong, open relationship with patients, to be able to tell them the truth, and to be there going forward, she added.
Another key finding was the importance patients placed on “choosing where they were going to die and how they would spend the last time available to them,” Evans said.
“There is no way to make an [intensive care unit] a pleasant environment,” Evans said. If cancer patients are spending their last days there, “it often means the care has gotten out of control, and is no longer based on quality of life. It’s preservation of life at the cost of quality of life,” she added.
To make sure those end-of-life needs are met, experts say cancer patients should have documents such as advance directives, living wills and durable power of attorney for health care, which appoints someone to make health care decisions should you no longer be able to.
But equally as important, Evans said, is for cancer patients to make sure they discuss their wishes with their family and their physicians.
“It first has to start with a conversation with your immediate family, and you have to understand the dynamics of your family, so that when you may be too ill to make decisions, that they understand how you would like things to be done,” Evans said.
“So many times, we never had that conversation. Families will say, ‘We don’t know what to do, just treat him. He’s a fighter.’ This person in life may be a fighter. But what happens if we are going to lose the fight? Do you want to go down fighting, or do you want to have time to feel not so bad and to have us focus on the quality of your life?” Evans continued. “We as Americans, we don’t have that conversation frequently enough, and we don’t have it with our physicians.”