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21 May 2014

Familias en Accion: Support, Hope and Help for Latinos Facing Serious Illness

Maria came to Portland to live when she was about to die.



Maria's journey through advanced cancer has been eased with the help of Familias en Accion.


After being diagnosed in Arizona with Stage 4 breast cancer, given six months to live, she moved to join her sister here. The move was to answer what seemed the only important question left in Maria’s life: who would care for her children after her life was over.

Three years later, Maria is raising her children, receiving treatment designed for her and her values, and volunteering in programs to help other Hispanics find their way through a diagnosis and a medical universe that can be paralyzing and isolating. Her cancer has not vanished. But she is a daily demonstration that even the most lethal disease can yield days and years and meaning when the response is shaped not only to the condition but to the patient.

“In my wildest dreams,” says Maria, “I never thought I would make it this far.”

Anyone blasted by a diagnosis of advanced cancer finds herself suddenly living in a new and alien world, where the language is different, the signposts are unreadable and even close companions can seem very far away. To a patient dropped in from a different culture, the situation can be doubly bewildering, leaving her near-frozen at a moment when decisions are most pressing.

When Maria first saw a doctor in Portland, he reviewed her condition and told her the hospital would attack her cancer with everything it had. Maria recalled she was “too scared to ask what that meant.”

His approach was skilled, professional and medically appropriate for the prognosis. But not for the patient.

That’s when Maria called Olga Gerberg.



Olga Gerberg helps Maria and other Latino patients with significant healthcare needs.


Five feet of determination and hugs, Gerberg works for Familias en Accion, a Portland agency helping Latinos find their way across a gap wider than anything on an EKG. Her title is director of patient navigation, but her job, she says, is “giving hope to people.”

Founded in 1998, Familias focuses on people confronting “chronic disease, including end stage renal disease, diabetes, cancer, HIV/AIDS and cardiovascular disease,” providing palliative care – improving quality of life and easing suffering in the face of long odds and relentless disease.  Cambia Health Foundation has provided long-term support to Familias en Accion, a program vividly expressing the Foundation’s goal of “improving access to high quality palliative care.”
 
The Foundation achieves this goal by forming strategic partnerships that advance patient-centered, effective palliative care that improves quality of life by addressing the physical, intellectual, emotional, cultural and spiritual needs of patients and their families. “The Patient Navigator program at Familias builds on their strengths, leadership and experience working directly with the Latino community to improve their quality of life,” says Elyse Salend, a program officer with the Foundation who works closely with Familias. “This community is a generally underserved population for quality palliative care services. For palliative care to be effective for patients and their families, health care practitioners must be aware of, and be able to match their care to the cultural context of the patient.”
 
“Community Health Workers, such as Olga, are trusted in the community and have cultural sensitivity but are missing a health care practitioner’s knowledge of palliative care services and systems. Connecting practitioners with underserved communities, and developing tools to train more members of each, could bridge these gaps.  That is what the Cambia Health Foundation’s project with Familias aims to address. If the project is successful we may begin to see a culture change, where the Hispanic community in our region begins to take control of their own health - and these lessons can be spread across the nation.”
 
In every sense, Gerberg speaks her clients’ language. But working with them is far more than a matter of translation. She tells her clients that doctors expect and want to be asked questions, even if they seem like daunting power figures, and even if patients may be so grateful for any treatment that they don’t want to ask for anything else. She works with patients’ families, because their pain needs to be faced as well, and because Latinos are more likely to have their entire families involved in medical decisions.

The health care system, she says, needs to be “culturally competent, to see a reason why people behave that way. There’s always a reason.”

“Every day I learn more about our humanity.”

Gerberg seems driven to melt what can be a chilly system with her own warmth, from personal connection (“I love to hug people. What’s wrong to hug?”) to extending herself weekends and evenings to reach people who work long days. Called one evening by a woman who said she was scheduled for surgery the next morning but didn’t quite understand what was happening, Gerberg appeared at the hospital before 6 a.m. and gently but firmly insisted that the surgeon explain things to his patient one more time before moving forward.

So she was just the right person to answer Maria’s distraught phone call.

Gerberg called Maria back 20 minutes after her initial call, to say that Maria had an appointment scheduled with a different doctor. This doctor made sure Maria understood her diagnosis, and what was coming.

“Olga explained to me right away that it wasn’t going to be easy,” remembers Maria. “She taught me how to make appointments, and what questions to ask.”
Now, Maria volunteers with other families, and with the Latino outreach program of a local breast cancer advocacy foundation. She goes to doctor’s appointments with families, and talks to them about their situation and their options.



Gerberg translates, hugs and helps.


“The community is getting to know Maria,” says Gerberg. “I use her as an example of how she lives with chronic disease.”

There are many who need an example. “In the Hispanic community, stage 4 is very common, because early detection is not there,” says Maria. “We don’t discuss it.”
Familias and the Cambia Health Foundation are working to provide more examples, and more navigators of a dark pathway. Through their effort “Empoderate/Health Empowerment: Palliative Care for our Latino Families,” they seek to work with families, together with a day-long program “Training the Trainers” to prepare more guides like Maria.

“The connections and empowerment that Familias is forging in our community are unique,” says Elyse. “Community leaders like Olga and Maria are changing the way Latino families experience advanced illness.  Communities across the nation could benefit from their ‘Train the Trainer’ model, and we want to shine a light on this innovative effort.”    The effort has no shortage of need. But it also has hope.



Maria, still fighting cancer, volunteers to help other patients.


“You can learn to have a chronic disease but have a quality of life,” explains Maria. “You accept the diagnosis, but you don’t accept how long you’re going to live. That’s when you start to live.”

Which, as much as anything on a med school PowerPoint, is a definition of palliative care.
 
David Sarasohn is a writer in Portland, Oregon for the Cambia Health Foundation, whose Sojourns program strives to create and advance high quality, patient and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. More at www.cambiahealthfoundation.org.