By the time Palo Alto physician Ellen Brown visits patients in their homes, they've considered their terminal diagnosis, talked it over with their physicians and opted for hospice, or "comfort care."
Brown, recently promoted to chief medical director of Sunnyvale-based Pathways Home Health & Hospice, is charged with making house calls to patients in the Palo Alto area to find out what's most important to them and devise a medical plan to support those priorities in what may be a person's final months or weeks.
"There's no cookie-cutter or prepackaged type of care with hospice," she said in a recent interview.
"My job, and the team's job, is to talk to the patient and find out what their values and goals are for this time of life.
"Some people will say, 'I don't want to go back to the hospital.' Some will say it's important to get outside and sit in their garden. Sometimes it involves the legacy they're leaving for their family, or connecting with old friends and family."
Some patients will say they have projects to finish and want to remain alert and can put up with a little pain, while others say they want their pain to be treated even if it makes them sleepy, she said.
"It's crucial for us to really find out what's most important (to the patient and family)," Brown said. "Sometimes the view is, 'There's nothing more to do so let's go to hospice,' but we say there's a lot we can do.
"We can't change somebody's prognosis, but the hospice team can do a lot to help patients and their families achieve a high quality of life in the time they have left. We can help people take care of loved ones at home and help them fulfill goals of a pain-free death and a death with dignity."
In his new book "Being Mortal: Medicine and What Matters in the End," Boston surgeon Atul Gawande discusses the failure of modern medicine to help seriously ill patients define their priorities and align treatment --curative or palliative -- to help the patient work toward them. To do so, he writes, requires "hard conversations" with patients that doctors typically are not trained for and tend to avoid.
He recounts a range of cases and outcomes with terminally ill patients -- including that of his father, also a surgeon -- and charts his own growth as a physician in learning to initiate the difficult conversations. "Being Mortal" has been on the New York Times nonfiction best-seller list since its publication in October.
Demand for hospice care, locally and nationally, has more than doubled in the 16 years since Brown joined Pathways, an independent, community-based nonprofit. Back then she said, about 20 percent of people at end of life used hospice, a figure that today approaches 45 percent.
But many more could benefit if patients were referred earlier and the role of hospice in improving a patient and family's quality of life were better understood, she said.
A patient is eligible for hospice if the physician believes he or she has less than six months to live and the patient elects comfort rather than curative therapy. A hospice team -- including a nurse, a physician, a home health aide, social worker and, if desired, a chaplain -- is assigned to provide care wherever the patient lives, in the home, a senior housing facility, nursing home or even a hospital.
"Hospice doesn't sweep in and provide 24/7 shift help, but (family members or caregivers) can be trained on how to take care of the person, and we can help them find other caregivers they can hire, if needed," Brown said.
Based on the recommendation of the hospice nurse, a home health aide comes weekly or daily to help with personal care. In a crisis, a hospice nurse may arrive to provide skilled support. And telephone help is available around the clock.
"In traditional medicine you just have the patient you're taking care of but in hospice you have the patient plus the family, and we address the needs of both," Brown said. "Care giving is really hard, and we're there to support them as well," including options for respite care.
Since 1998 when Brown joined Pathways, the agency's average daily patient count across the Bay Area has grown from about 100 to 465, adding up to thousands of patients in a given year.
Nationally, public awareness has grown through media coverage of hospice as well as through organizations like columnist Ellen Goodman's The Conversation Project and a movement known as Death Cafe, Brown said.
Even so, many remain unfamiliar with the benefits of hospice in optimizing quality of life for terminally ill patients and their families, she said. "Hospice is viewed as the best care at the end of life, but how do you get it? I'm not sure we're there yet.
"But it's hard for me to imagine a family taking care of a loved one at the end of life without the support of hospice. Who do you call in the middle of the night for a person who doesn't want to go to the hospital? Hospice is available 24/7."