This article was originally published in the Winter 2010 issue of the San Francisco General Hospital Foundation News
t’s been said that how we live is how we die. As an institution that serves the city’s most vulnerable populations, San Francisco General Hospital and Trauma Center (SFGH) is committed to the principle that all people should be treated with dignity through all stages of life-including the end of it. Now that commitment has taken shape with the opening of the SFGH Palliative Care Consultation Service, a program that improves the quality of life for patients with chronic and life-limiting illness, including those near the end of life.
Headed by Doctors Anne Kinderman and Heather Harris, the Palliative Care Service is an interdisciplinary program that addresses not just the medical needs, but the psychological, social and spiritual needs of patients and their families.
"At San Francisco General, our mission is to provide excellent care to the most vulnerable people in our city and county. We would argue that people who are coming to the end of life here are especially vulnerable," explains Kinderman. "Our Palliative Care Team has the time and expertise to focus on relieving physical suffering, as well as supporting the family and the patient. "By nature, palliative care is interdisciplinary" she continues. "As a physician, I focus on particular things with a patient, but I might miss non-verbal cues or family dynamics that others will notice. That’s why we have a physician, a nurse, a social worker and a chaplain on board. Each of us contributes in different ways, and together we work with the whole person during his or her advanced illness."
Kinderman adds that palliative care should not be confused with hospice.
"Hospice is a specialized form of palliative care for patients who have limited prognoses, usually only six months to live," she explains. "Palliative care focuses on improving quality of care for patients, regardless of the prognosis. Ideally, it’s happening at the same time as curative or life-prolonging treatments, so that patients can have better quality of care even as they fight their illness."
In addition to support from the City and County of San Francisco, funding for the Palliative Care Service comes from the California HealthCare Foundation (CHCF), a philanthropic organization dedicated to improving the way healthcare is delivered and financed in California. As part of its commitment to promote appropriate end-of-life care, the CHCF established the Spreading Palliative Care in Public Hospitals project in 2008.
"Palliative care provides patients with high-quality, appropriate care," says Kinderman. "It also allows them to die with dignity. Too often, before our Palliative Care Service was in place, we would see patients dying alone or with another patient in the room.
"The California HealthCare Foundation saw a great need for palliative care services, and so they funded programs across the state. They understood that San Francisco General could set a unique example for other safety net institutions, especially for those with academic affiliations like we have with UCSF."
To make life as comfortable and homelike as possible in the last days and weeks of a patient’s life, two rooms in the hospital’s Oncology/HIV unit have been remodeled as comfort care suites with the help of a Hearts grant from the San Francisco General Hospital Foundation. The nonprofit organization, Healing Environments, donated services, artwork and furniture to create a warm and peaceful environment in the suites.
"The first person who stayed there was estranged from her family and had been homeless most of her adult life," says Regina Epperhart, the program’s social worker. "All she wanted to do was go to Australia to be with aboriginal tribes and be closer to the earth. She couldn’t go of course, but she did stay in our comfort care suite, which contains a lot of wood and pictures of trees. I think her free spirit resonated with the purpose of that room. She was there for several days before she died.
"Even though she didn’t have family to be with her, she was comfortable from a physical and emotional standpoint. Our staff visited with her and held her hand. It was so powerful to see the high quality of care someone could get, even when she was all alone."
But usually people who receive Palliative Care Services are not alone.
"A person’s life affects those around them. Often the way that people address illness is as a family unit," says Kinderman. "Our service helps families. People have been able to die here with their loved ones around them."
Epperhart recalls one patient who was taken out of the hospital’s acute setting to live out her last days in a comfort care suite. Family members were able to sleep in the room and be with her round the clock.
"I went in late one night and saw about 20 family members around her bed. They brought lots of food and were able to spend her last days with her," Epperhart says. "Four generations were there, including great-grandchildren. It was important for the children to come to a place that didn’t look like a hospital room. We gave this woman respect and dignity, and she died as she lived, with people around."
In addition to providing a space for family members to be, the Palliative Care Service helps them communicate with medical teams and connect with social service programs throughout the city. "We have helped to fill in some significant holes for patients and families," says Kinderman. "Often after someone dies, there’s very little structure in place to help support the family. We’ve been able to provide support and continuity for families that are grieving and trying to navigate a complicated system after their loved ones have passed."
As with all SFGH programs, cultural sensitivity and competency are critical components of the Palliative Care Service. Different cultures bring different views and traditions to the end of life. A recent survey found that, at the end of life, affordability of care is a top concern for Asians and Latinos; for African-Americans the concern is about finding providers who respect their culture; and treating pain and discomfort is paramount for Caucasians.
"It’s so important to have awareness of different cultures," says Epperhart. "About 40 percent of our patients have limited English proficiency. We work very closely with our interpreters. We have to understand that in certain cultures it’s not the patient who’s the decision maker. It can be the spouse or children. That’s part of their tradition."
Just as important is the spiritual component of the Palliative Care Service. In February, chaplain Eric Nefstead joined the Palliative Care Team.
"Part of human dignity is about making choices that are true to your spirit. The work of our team is to try and help people do that," says Nefstead. "We listen to patients’ hopes and fears. As they give of themselves, it helps us give of ourselves and then the world is freed of some fear and pain. We can all recognize the joy of living even in the sad moments of our dying or that of our loved one."
Nefstead, who has been working in end-of-life care for 15 years, says he wears two hats as the Palliative Care Service chaplain. First, he is a clinician who works directly with patients. "Many of the people we serve at San Francisco General have experienced trauma in the form of poverty, immigration and substance abuse. That can make them afraid and distrustful of others," he says. "As a chaplain, I can help them find their own voice and desire amidst the bigger system."
Nefstead is also a teacher in the SFGH Clinical Pastoral Education program, training those who provide spiritual services at SFGH and beyond.
"Part of what I teach theological students and religious leaders is how to listen attentively to people near the end of their lives. As spiritual leaders, we can help people discover their own spiritual resources as they face the reality of their death," he continues. "Then when our students leave here, they can bring what they’ve learned to others in other hospitals."
In fact, just about every aspect of the Palliative Care Service is seen as a teaching opportunity.
"Our goal is not only to provide excellent direct patient care, but to share those methods with other institutions," says Kinderman. "We can show others around the world what people can experience at the end of life."
There is a strong practical element to palliative care, too. While over half of Americans express a preference to die at home, only one-quarter do and approximately one-half die in a hospital. As a result, end-of-life care is costly, consuming 10 to 12 percent of all healthcare costs and the majority of Medicare expenditures in the year prior to death. With palliative care, the most appropriate services are provided to each patient, often instead of invasive and unnecessary medical treatments.
While the Palliative Care Service is a recent addition to SFGH, it is already receiving a warm reception. Early predictions were that services would be provided to about 150 patients a year. At the time of this writing (three months into its existence), the program has already served more than 70 patients.
"In a short amount of time, we’ve been able to dramatically improve the level of care that people receive at the end of life," says Kinderman. "That’s had a visible impact on patients, family and staff across the hospital."
"What’s great about working with the palliative care team is that each person brings a spirit of appreciation for the fullness of life," adds Nefstead. "No one is just a doctor or nurse here. Everyone is a humanitarian."