Doctors tend to view every patient's death as a failure, but one of medicine's greatest shortcomings is its refusal to fully care for the dying.
"In our attempt to focus so much on cure," says Kathleen Foley, a neurologist at Memorial Sloan-Kettering Cancer Center in New York, "we forget to care for people the way we should be."
A good number of cancer patients probably die in severe pain, even at the best hospitals. Worse, patients don't seem to be the ones making decisions about how and where they die. Instead, their care is mostly determined by the habits of their local health care system or hospital. Geography is the biggest factor in whether patients die in an intensive care unit, elsewhere in a hospital, in a nursing home or in their own homes, where most people say they want to die. And the need for better care of the dying is only getting greater as the baby-boom generation gets older — and, eventually, sicker.
Already, end-of-life care is straining the health care system. Half of lifetime health expenditures occur in the senior years. Treating symptoms of pain is far cheaper — and possibly more humane — than extending life by a few months with the newest, most expensive drugs, and treating patients at home is far cheaper than treating them in the hospital. In cases where such measures are better for the patient, why aren't they always put in place?
"Patients are not looking for better end-of-life care," says Susan LeGrand, a palliative-care physician at The Cleveland Clinic. "They're looking for not having to die." Doctors, patients and families all avoid talking about death — and the need for patients to make their own decisions about how it happens — until the end is very near. "Because they won't talk about it," says Sloan-Kettering's Foley, "patients get themselves into circumstances where they don't want to be."
If people don't decide how they want to die before death is imminent, and discuss that decision with their families and doctors, their location may make the decision for them. For instance, a full 30% of Medicare patients in Newark, N.J., die in an intensive care unit, the least preferable option, compared with just 6 percent in Bend, Ore., according a Dartmouth University study.
In another study, Joanne Lynn, director of the Washington Home Center for Palliative Care Studies, found that patients' preferences, their disease and their family situation only had a minor impact in where they died. People were likely to die in a hospital, she found, when there were a lot of hospitals nearby. The problem, Lynn emphasizes, may not be with having lots of hospitals, but with a health system that simply does with the next dying patient what it had done with the one before.
For instance, she says, areas where people frequently die at home, not in the hospital, are more likely to have at-home care available. Still, it's possible that the number of people who want to die at home has to do with the awful job that many hospitals have done in caring for the dying. What patients may mean, Lynn says, is "I don't want to be stuck in a hospital tormented by machinery and surrounded by a bunch of people in white coats."
Certainly it is possible for a hospital to do a good job caring for the dying. One shining example is Calvary Hospital, a 200-bed facility in the Bronx that is the nation's only hospital devoted solely to the care of dying cancer patients. Michael Brescia, who has directed Calvary for 40 years, agrees that hospitals often do too much. "Patients suffer greatly because of it," he says. But he also thinks that home care, also called hospice care, often does too little for many patients.
"My mother died of cancer," Brescia says. "She was at home. With me and my expertise, and four sisters taking a leave of absence, it was very difficult on a daily basis to care for her at home the way we wanted to. We ran out of sheets. A lot of people run out of money."
Hospitals can do a better job. Brescia points out that more than 95% of patients at Calvary have their pain under control within a day of arriving there. He also believes that doctors simply need to spend more time with their dying patients. Moreover, sometimes the basics — like keeping patients clean despite oozing wounds — are as important as new treatments. "Stressful is being at a hospital where there are no sheets and no towels and nobody cares," says Nancy D'Angelo, a nurse who runs Calvary's hospice program. Sometimes, making patients comfortable can be as simple as making them what they want for dinner.
All this isn't that expensive — Calvary spends only $700 per patient per day, a third of what a regular hospital spends. Meanwhile, treating diseases aggressively until the bitter end adds dramatically to health care costs. According to a study in the journal Health Services Research, patients who reach the age of 85 still have a third of their lifetime medical costs ahead of them. Trying to slow cancer deaths by a few months with the latest cancer drugs from and can easily cost several hundred thousand dollars per patient or more.
"If we handed the patient a check for part of that amount," asks Joanne Lynn, hypothetically, "how many people would take the check and how many would take the treatment?" Says The Cleveland Clinic's LeGrand, "If we cure breast cancer, if we cure heart disease, people are still going to die. So how much money do we spend to prevent something that's going to happen anyway? Those are philosophical questions to which I don't have answers."
But delivering end-of-life care to cancer patients may be the easiest part. Increasingly, patients die of chronic ailments, such as a weakened heart or Alzheimer's disease, that can linger on for years. Cancer patients under Medicare are entitled to months of hospice care, but they rarely get it. We don't know how to care for dying patients over the long haul, or how to pay for that care. But as the baby boomers age, we're going to have to learn to treat people better as they die. And we're going to have to ask hard questions about what kind of care we can actually pay for.
"I think it will be wrenching," says Lynn, "because we've been under the illusion that we can afford it all."