For Americans with a terminal diagnosis, death increasingly comes in the places and ways they say they want it — at home and in the comfort of hospice care.
But for a growing number of dying patients, that is preceded by a tumultuous month in which they endure procedures that are often as invasive and painful as they are futile.
New research finds that the proportion of Medicare patients dying in hospice care nearly doubled from 22% in 2000 to 42% in 2009, an apparent bow to patients' overwhelming preference for more peaceful passings free of heroic measures. At the same time, though, many of those patients were treated aggressively until days before death seemed inevitable.
Based on the medical and death records of almost 850,000 Medicare patients, the study, published in Wednesday's edition of the Journal of the American Medical Assn., paints a picture of increasing commotion in the final weeks of patients' lives.
The patients in the analysis all suffered from the end stages of chronic diseases such as cancer, chronic obstructive pulmonary disease or dementia. But thousands of them endured multiple hospitalizations and treatments before receiving care aimed solely at making their final days comfortable.
During the decade studied, the proportion of patients who spent part of their last month in an intensive care unit grew from 24% to 29%, and the percentage who were hooked to a ventilator rose from 8% to 9%. Among dying patients, the median number of disruptive moves — for example, from nursing home to hospital, from hospital to hospice, from rehabilitation facility to home — grew from 2.1 to 3.1. Among those who spent their final days in a hospice program, 28% were there for under four days.
"I suspect this is not what patients want," said Dr. Joan Teno, a palliative care physician and professor of health services policy and practice at Brown University, who led the study.
In surveys, almost 9 in 10 Americans say that when the end is near, they would prefer to die at home, with medical care that maximizes their comfort and minimizes the pain and turmoil of treatments aimed at extending, not saving, their lives.
Those evolving views have helped drive a surge in U.S. hospice programs from 2,300 to 3,500 during the 10 years of the study. It also fueled the growth of hospital-based palliative care that places more emphasis on maximizing the quality rather than the quantity of patients' remaining days; the number of such programs doubled during the same period and is now available in 63% of American hospitals.
But the latest research suggests that patients' wishes may not be getting through to the family members and physicians who help guide patients' end-of-life journeys. As a result, their final days are far from what most would consider ideal.
"There's almost always, in every medical circumstance, one more thing we can try," said Dr. Julie Bynum, a gerontologist at Dartmouth's Geisel School of Medicine and coauthor of the study. "It's hard for a doctor to say, 'I have one more thing I can do, but it's not a good thing.'"
The time to begin the conversation with family members and doctors about end-of-life care is well before the final crisis begins, she said. If a patient's wish to avoid aggressive treatment is clear, "you need to prevent him from getting into that cycle of acute care," she added, "because once they get into the hospital, it's really hard to get them out."
The growth in aggressive end-of-life care may not be very popular with American taxpayers either.
Lawmakers are urgently seeking ways to "bend the cost curve" of American healthcare spending, and end-of-life care looks like a rich source of potential savings. Nearly a quarter of all Medicare dollars — about $125 billion per year — is spent on the 5% of patients who are in their final year of life.
That fact helped spur a proposal encouraging physicians to discuss with their Medicare patients what kind of care they would want if they were terminally ill. But that provision of the Patient Protection and Affordable Care Act was scuttled by those who feared that such discussions would lead to "death panels" that limit care for the dying.
The causes of the trend toward more — and more aggressive — end-of-life care are many and varied, physicians said.
Growing capacity in American hospitals drives greater use of healthcare at all stages of life, including the very end. Doctors often fail to be clear about a patient's poor prognosis and to plainly state the likely consequences of continuing painful, aggressive care. Patients and their family members are often unwilling to give up, and so they push on with tests and procedures that bring more misery yet hold scant prospect of extending life.
That hospices are becoming the "last resting places for people who've been through a high-tech tunnel" should not be surprising, said Dr. John Wennberg, a Dartmouth medical school expert on end-of-life care who was not involved in the new study.
As hospice and palliative care programs have grown in number, so too has the capacity of acute-care hospitals, he said. And healthcare usage in the United States appears to follow an "if you build it, they will come" pattern, with growing capacity helping to drive increased use of both hospitals and hospice or palliative programs.
The conventional wisdom "that if you invest in one sector, you'll reduce demand in the other is wrong," Wennberg said.
Teno agreed that the U.S. healthcare system encourages overuse of tests and procedures, often on patients who will not benefit. To force change, she said, patients need better information on whether doctors and hospitals have a good record of honoring the healthcare preferences of those at the end of life.
Physicians need to change too, Bynum said.
"We're pretty fearful of taking away hope," she said. "But my response is, 'Your hope for what? Return to full function?' In many cases, that's not achievable."