Making a Graceful Exit

Everyone plans for the birth of a baby. But at the other end of life, health care workers know little about how to predict when seriously ill people will die or what dying people need to make their last moments comfortable.

As part of a research study at the University of Washington (UW), Seattle, Julie Martin--a 75-year-old home hospice patient--gets an hourlong massage twice a week from a trained masseuse. No one thinks that the relaxing rubdowns will shrink the brain tumor she's had for 16 months--or allow her to live longer. But the researchers hope to find out if comforting therapies such as massages or meditation can improve the last weeks or months of dying people and their loved ones who take care of them.

According to experts in end-of-life care, objective studies such as this are long overdue. Thanks to general improvements in health care, people are living longer--and in many cases, spending more time dying of diseases that used to kill quickly. To care better for people in the final stage of life, researchers need to learn more about the experience of dying.

Last month, researchers convened at the National Institutes of Health (NIH) in Bethesda, Maryland, to discuss the current state of knowledge about the end of life and to identify research gaps. They reached one overarching conclusion: "We need a transformation of the research agenda and the health care system," says clinical researcher Karl Lorenz of the University of California, Los Angeles, and the Department of Veterans Affairs (VA) Greater Los Angeles Healthcare System. And that revamping needs to start soon: By 2050, 1 in 5 Americans will be over 85 years of age.

But the research has to start at the end, says gerontologist Terrie Wetle of Brown University in Providence, Rhode Island: "We need to better understand the place of dying in modern society." Geriatrician Joan Teno, also of Brown University, notes, "Because we're not good about talking about death and dying, we haven't set up systems of care that value it and pay for it."

Adding to their difficulties, the researchers who gathered at NIH couldn't even find a working definition of "end-of-life." Often, the term is dictated by government regulations, they found.

For example, Medicare will pay for hospice services--care for the dying at home or in an institution--for the last 6 months of an individual's life. But predicting time of death is difficult (see "Better Prediction, Better Care") -- particularly when the three major causes of death in the United States have different time courses and pathologies. Cancer is the most predictable killer, and its victims often know when they have no expectation of recovery. But patients with dementia live for years with the stresses of slow death. And people with heart failure usually die unexpectedly from cardiac arrest.

The unpredictable nature of these ailments makes it difficult for doctors to anticipate when a person has only 6 months to live--and makes it hard for patients to know when they can take advantage of Medicare's hospice benefit. Why else would the median time in hospice care be only two weeks, asks Wetle, when "we know the services are good for six months?"

The type of terminal illness also influences where people will die--and what kind of medical care they will receive. Because death by cancer is so foreseeable, about 50% of cancer patients end their lives in hospice care. But dementia patients often languish in nursing homes, where caregivers are usually not trained to deal with them. And chronic heart failure often keeps people returning to hospitals that are not focused on making them comfortable in their final hours.

Managing pain is at the forefront of end-of-life care. Most often this palliative care involves drugs: morphine and its relatives to alleviate pain, or Valium and the like to alter the patient's perception of pain. But people vary widely in their response to drugs, and researchers don't yet know why. UW gerontologist George Martin has to physically chop up morphine pills to find a dose that his wife Julie, the patient in the massage study, can tolerate. "[End-of-life caregivers] want patients to be calm and have peace of mind, but we don't want them to be zombies," he says.

Compared with cancer, which is practically pain's poster child, little is known about pain in dementia or heart failure, says Lorenz. One study found that 30% to 40% of patients with heart failure complained about pain in the last six months of life. Yet their discomfort is often neglected because acute-care hospitals aren't set up to deal with the daily demands of patients with chronic conditions. "In clinical care, there is little place for palliative care," says Lorenz.

Part of the problem lies in a system that pays disproportionately more for acute treatments than for chronic care. Administrators need to make it worth a physician's time to check up on patients in nursing homes, where "M.D.s are missing in action," says Wetle. Some hospitals are already taking steps to improve the plight of dying patients. VA institutions, Lorenz says, now promote palliative care and train their doctors to recognize or look for chronic pain in patients dying from diseases other than cancer.

Geriatrician Teno proposes that researchers gather information about end-of-life experiences by interviewing caretakers and loved ones sometime after a patient has died. One such "followback" study, which she published early last year, found that families of nursing home residents "clearly identified not enough emotional support and lack of spiritual concerns" as shortfalls in health care for dying patients, she says. Addressing the issue could be as simple as "sitting down with them and letting them vent."

Meanwhile, the end-of-life massage study at UW is going well. Public health physician William Lafferty, the study's lead researcher, says that most people are sticking with the program even though "it's a difficult time for someone to participate in research." George Martin says the therapy has benefited both his wife and himself. "It's been a marvelous experience--a tremendous help," he says. "And the massages--down to her toes--make Julie happy." In that sense, it seems, the study has already achieved success.

Mary Beckman is a freelance writer in Idaho Falls who thinks twice-weekly massages should start long before one's 70s.