When Donny learned his cancer was terminal, he declared his intention to live as long as possible no matter what the circumstances. Each time he was hospitalized—10 times over two years—he asked for and received the most aggressive treatment available. He lived long enough to celebrate the birth of his granddaughter, but suffered frequent nausea, fevers, chills and periods of delirium. During yet another bout of pneumonia, he died in the intensive care unit.
After Delores' cancer was diagnosed, the initial rounds of radiation and chemotherapy proved ineffective. She was told more intense treatments could extend her life by weeks or maybe months but chose only those that would ease her pain. She spent her final 16 weeks at home, receiving hospice care, mentally alert and with minimal physical suffering.
Though you and I might have strong ideas about which of those two paths we would choose if we were in Donny's or Delores' shoes, neither choice is more valid than the other. What's heartening is that they, and thousands of Americans in similar circumstances, are finally being given a choice.
Until recently, health care providers saw extending life as their No. 1 responsibility, and they did so by whatever means possible. Patients were not invited into discussions about their own care. Quantity of life trumped quality of life, and most of these patients died in hospitals tethered to tubes and machines.
Surveys have shown again and again that the majority of patients, if given a choice, would forego extraordinary treatment that would diminish the quality of their lives. Most prefer to die at home, with their loved ones near and their pain controlled.
A study from the Dartmouth Atlas indicates that may be happening more. Between 2003 and 2007, the rate of death in hospitals among patients ages 67 to 99 with at least one chronic illness fell 12.8 percent, while days in hospice care jumped 47 percent. However, among patients who indicated that they preferred to die at home, 55 percent still died in the hospital.
On the other hand, the number of U.S. hospitals with 50 or more beds that offer palliative care services rose from 658 in 2000 to 1,486 in 2008, according to the Center to Advance Palliative Care. These programs—designed for all critically ill individuals—help with pain and symptom control, coordination among providers and transitions between care settings.
More hospitals are encouraging staff to be frank with patients and their families as early as possible, and to ask whether to take aggressive measures if they significantly diminish quality of life. Many more hospitals—all hospitals—need to do so.
There are resources to help. Palliative Care Leadership Centers, for example, offer training and mentoring to help hospitals start and expand such programs.
For inspiration, check out July's H&HN; we'll profile winners of this year's Circle of Life Awards, hospitals that have built palliative care and end-of-life programs that keep patients' wishes top of mind.