Donald Vargo, 61, has survived three heart attacks and a stroke in the past two decades. He suffers from chronic obstructive pulmonary disease and congestive heart failure, and sometimes chest pain keeps him awake half the night. But while Vargo knows he is dying, the Navy veteran is determined to pack as much life as he can into the time he has left.
“I’m going to keep fighting until the end,” Vargo said as he rested on the hospital bed in his Tenderloin single-room occupancy home on a recent afternoon, describing a trip to Michigan he and a friend hoped to take to see Vargo’s 13 grandchildren one last time.
For the past seven months, Vargo’s most important ally in that fight has been Hospice by the Bay, a nonprofit that provides palliative care for terminal patients. Hospice care has helped him stay out of hospital emergency rooms, where he used to be a regular.
“I don’t want to be in the hospital when the time comes,” Vargo said. “I want to be in my own bed. I feel more relaxed, more comfortable.”
Many patients with terminal illnesses likely would share Vargo’s sentiment, yet a recent study by UC San Francisco doctors found that too often, people spend their final days in the ER.
“I’ve seen so many patients come through the emergency department when they’re clearly dying,” said the study’s lead author, Dr. Alexander Smith, a professor of geriatrics at UCSF and a palliative care specialist at the San Francisco VA Medical Center.
In the study, published in the journal Health Affairs, Smith and colleagues at UCSF and Harvard Medical School looked at case histories of patients 65 and older who died while participating in a national longitudinal study. A little more than half had visited an ER in their last month of life. More than three-quarters were admitted to the hospital, and two-thirds died there.
Smith said those numbers were too high.
“The emergency department is not designed to care for dying patients,” he said. “It’s designed to provide rescue, to save lives.”
Dr. Anne Kinderman, a palliative care specialist at San Francisco General Hospital who did not
contribute to the study, said hospitals are increasingly recognizing that typical emergency care is not right for dying patients who come to the ER.
“Everyone wants to do the best thing for the patients,” Kinderman said. “The difficulty is recognizing dying. … In the United States, we tend to have that bias, that more aggressive intervention is better.”
A few months ago, Kinderman said, S.F. General put together a list of standing orders for dying patients who come to the ER. They include a prohibition on loud, beeping monitors; a private space so patients can be alone with family; and a focus on drugs that decrease pain and discomfort.
Doctors at S.F. General also refer patients to a hospice when they can. That is a move recommended by the UCSF study’s authors, who noted that not only is emergency medicine ill-suited and unpleasant for dying people, it’s also more expensive than hospice care.
In addition to recommending the American health care system place a greater emphasis on hospice and palliative care, the study’s authors also urged people to plan for the end of their lives with doctors and family members.
“Too often, these conversations don’t take place,” Smith said.
Partly to blame, Smith said, is the inflammatory rhetoric surrounding the Affordable Care Act, the 2010 health care law that was recently upheld by the U.S. Supreme Court. In 2009, those opposed to the legislation used the term “death panels” after a plan was floated to have Medicare reimburse doctors for end-of-life planning.
“It does add to the sense that this is a dangerous topic,” said Judy Citko, executive director of the Coalition for Compassionate Care of California.
But Citko said the “chilling effect” had not stopped elderly and very ill patients from embracing an advanced directive program called Physician’s Orders for Life-Sustaining Treatment, or POLST, which has been legally recognized in California since 2009.
“If they don’t have a directive, they’re going to go with full measures, because that’s the default,” Citko said.
Donald Vargo keeps his POLST form taped to the wall beside his door. As a nurse from Hospice by the Bay visited recently to check his symptoms and make sure he had enough morphine to last through the weekend, he emphasized again how important it was to him to stay out of the hospital.
“In the hospital, all you are is a number and a dollar sign,” Vargo said. “In hospice, it’s not like that; everybody knows your name.”
Source: Hospice Association of America