It's not as if we weren't warned.
"She's 5 feet of hugs and enthusiasm. She's going to hug you... just so you know," said Angela Hult, executive director of the Cambia Health Foundation. "Olga is amazing."
That would be Olga Gerberg, director of patient negotiation for Familias en Accion, a Portland, Ore.-based health care advocacy group. Sure enough, within minutes of meeting, Gerberg's arms were wrapped around this reporter. That's just who she is—patient advocate, caregiver and hugger-in-chief. Gerberg spends her days helping families facing diagnoses of cancer, diabetes, HIV/AIDS and end-stage cardiovascular and renal disease. In 2001, Gerberg first met and hugged Pilar (her full identity is not revealed here because of her immigration status). Pilar, who was brought to the United States when she was a teenager, is a mother of three. She was diagnosed with Stage 4 breast cancer and given six months to live.
But following some aggressive treatment and a lot of assistance from Gerberg (including thousands of hugs), Pilar has survived cancer thus far and was proud to share her story of survival to dozens of Boise caregivers at Saint Alphonsus Regional Medical Center. While she spoke to a meeting room filled with doctors, nurses and social workers at Saint Al's Boise campus, a column of words appeared on a screen behind her: respeto, personalismo, confianza, familismo (translations: respect, personal relationships, trust, extended family). Pilar's appearance was part of special, culturally sensitive training on palliative care, with particular emphasis on Latino families, sponsored by the Cambia Health Foundation.
"Mi nombre es Pilar," she said, walking to the front of the room. "When my doctors said, 'cancer,' that was a new world. It was like someone had opened a door and I was pushed through."
Untold volumes of medical textbooks have detailed the drug, radiation, chemotherapy and radical surgery treatments for cancer and other serious illnesses. Palliative care, however, is still relatively new. The concept is well established—the desire for respeto (or respect) and confianza (trust) are universal—but it wasn't until a couple of decades ago that American hospitals fully embraced the reality of palliative care.
Not to be confused with hospice care, which focuses on relieving symptoms and supporting terminally ill patients with a life expectancy of months, palliative care can be offered at any stage of a person's illness. Still, many Americans aren't familiar with the term.
"Research shows that a big part of the challenge is that most Americans don't understand what palliative care is," said Hult, speaking from the Cambia Health Foundation's office in Portland, Ore. "It's really about asking the question, 'What matters to you?' rather than asking, 'What's the matter with you?' Many patients have a life-limiting or terminal illness; but we're really talking about quality of life and making sure that a patient's wishes are respected and honored."
Dr. Kevin Clifford has been at the forefront of palliative care in Idaho. A physician in Boise since 1988, Clifford was a faculty member at the Family Practice Residency of Idaho, helped create the first HIV specialty clinic in the state and, in 2002, started the palliative care program at Saint Al's. When Boise Weekly asked him about the genesis of palliative care in America, Clifford pointed to the fact that while more patients now live longer with disease, they do so in greater pain.
"The price that we've paid for a 50 percent increase in life expectancy is that many people have had a bad death," said Clifford. "As we were able to keep people alive, the quality of that life deteriorated."
Studies continue to document how American caregivers haven't done a good job of taking care of people in their final days, Clifford said.
"We lost something as we became more and more specialized, more and more effective at disease management," he added. "We lost some of the wisdom that accompanied the role of a healer. We certainly knew more answers and knew more studies, but we didn't know if our patients were happy."
When it comes to so-called living wills, which have become more commonplace since the Patient Self-Determination Act became law in 1991, Clifford said the good intention of a living will was appropriate, but the end result left too many vagaries.
"A living will often read, 'If there's nothing you can do to prolong life more than a short while, then I want to be comfortable.' That's a very limited document," said Clifford. "Maybe they should read, 'If my cancer is advanced and I have eight weeks to live with aggressive treatment, or two weeks to live without it, I want to be comfortable.' And when physicians talk to families about what the patient wants, we use abstractions and talk in terms of medical procedures, and that limits the conversation. For example, San Francisco General Hospital has a very good internal medicine program, but they found that the amount of time that hospital-certified physicians spoke with patients about the patient's preference was one minute. And when that patient is being admitted to an emergency room, that patient is sick and tired and is being asked, 'Do you want this or that procedure?' and there's very little verification that people understand what's going on."
That's where palliative care steps in.
'I have to be invited.'
"It's a very privileged position," said Clifford, who meets with his team before making rounds on Saint Al's intensive care and coronary care units each morning.
"But I can't see a patient about palliative care unless a doctor asks for it. I have to be invited," Clifford said. "As times passes, yes, more people have heard about palliative care; but over two-thirds of the patient population still don't know what it is."
And "what it is" is a lot of listening: listening to the patient, the patient's family, friends, social workers, specialists, etc. It's a challenging task when more and more differing cultures, some of whose practices conflict with modern American medicine, are presented in emergency rooms each day.
"When I first came here, everybody spoke English. Now, there are... well, how many cultures are there in Boise?" Clifford said. "Tibetans, Nepalese, Bosnians, Yugoslavians, Iranians, Iraqis, Saudis, Somalis... I could go on."
With that, the Cambia Health Foundation has chosen to train more caregivers in Idaho on culturally sensitive palliative care, with particular emphasis on the Latino community. According to census data compiled by the Idaho Commission on Hispanic Affairs, Idaho's Latino population is growing faster than the general population: From 2000-2010, Idaho's non-Hispanic population increased by 17 percent; during the same 10 years, Idaho's Hispanic population increased by around 73 percent.
"Inside the Latino community, there's a higher rate of Stage 4 cancer diagnosis," said Hult. "And without proper and timely care, I'm afraid that can lead to a terminal outcome."
She added that because many Hispanic families weren't comfortable with asking questions, whether because of cultural barriers or uncertainty over their immigration status, they weren't getting the information they needed in a timely manner. That's when Cambia teamed up with Familias en Accion to reach out to Latinos in Portland, Ore., to discuss palliative care.
"And we saw some fantastic results," said Hult.
Some of the barriers are more obvious than others: linguistics, for example, require a translator, which could conflict with HIPAA (the federal Health Insurance Portability and Accountability Act) which requires strict confidentiality of a patient's records.
"There have even been some questions among providers saying, 'We're not quite sure what we can or cannot say.' Even within the system, there's some confusion. But, yes, interpreters are perfectly allowed," said Hult. "And a patient navigator can help eliminate those barriers."
That would include a patient navigator like Gerberg, who spends her days building trust with patients' families and sometimes with patients who feel alone—like Pilar, whose family was far away at the time of her own cancer diagnosis.
"Here I was in the States and somebody says, 'cancer.' But three years later, here I am today, sharing my story because Olga was there for me," Pilar said. "In a very real way, I'm the voice of all those people who deal and struggle with the system. They're diagnosed with a chronic disease and they don't know where to go and whether something like palliative care is there for them."
Pilar and Gerberg spent time with caregivers at Saint Al's locations in Boise and Nampa, as well as St. Luke's Boise Medical Center, to talk about palliative care for Idaho's Latino community. The need, however, is much broader.
"A community needs to be ready to offer palliative care for different cultures," said Hult. "You have to have providers in place, providers like Dr. Clifford. And with that, we hope there's a ripple effect."
Clifford emphasized that it is equally important to understand that there's a risk of actually knowing too much about a culture, then defining a person by that culture.
"All cultures respond to genuine effort of respect," he said, adding that almost every day of his work includes combinations of joy, sorrow and grief.
"I see them every day," Clifford said, pausing to look out on the Boise Foothills from the fifth floor of Saint Al's. "To be a very good palliative care physician, you have to be able to access the joy, the relief and, yes, the heartbreak. They're all necessary. It's the human condition."