My name is Heidi Behforouz. I am the Director of the Prevention and Access to Care and Treatment or PACT Project, PIH’s domestic project, where we employ community health workers—inspired by those in Haiti, Peru, and Malawi—to provide home-based services to the most marginalized HIV/AIDS patients in the city of Boston.
We hear a lot of talk these days about health care reform. The new lingo includes phrases like “public option”, “single payer”, and “global fees.” Perhaps the most interesting phrase is that of a “patient-centered medical home”: the concept that all medical care should be patient-centered and that all clinics and hospitals should be revamped to create a home-like atmosphere for patients and provide wrap-around services that address patients’ most complex needs.
I find the term “interesting” because the community health workers of PIH, including those of the PACT Project here in Boston, have been creating patient-centered medical homes all along. And in some ways, they do it better than we, as doctors and nurses, ever will. Because they come from the same communities and share many of the same experiences as their patients, they are uniquely qualified to bring sophisticated medicine to patient homes and deliver individualized care within the real contexts and belief systems of their patients.
A patient-centered medical home is not a new concept, and although I laud every attempt to improve our health care delivery system, I fear that we’ll forget that “best practice” for this kind of care already exists. We don’t need to start fresh; we just need to look around and acknowledge community-based models of care that are highly effective but largely unrecognized, perhaps because much of the care is being delivered by “paraprofessionals” who have not been extensively schooled in the biomedical model and don’t prescribe to hierarchical or office-based care. Their schooling and expertise is in the art and science of what we call accompaniment.
Accompaniment in one sense is an easy term. You walk with the patient—not behind or in front of the patient—lending solidarity, a shoulder, a sounding board, a word of counsel or caution. Empowering not enabling.
But in another sense, accompaniment is incredibly difficult, because you must walk with patients as they suffer from the violence of poverty, racism, illiteracy, social isolation, and fatalism. These are things that neither you nor your patients can fix; and yet you have to manage them somehow in order to help your patients swallow their pills every day, get to their appointments on time, and renew their Medicaid applications.
Community Health Workers offer tales of accompaniment
I asked my PACT community health workers this week to talk to me about what accompaniment means to them. Most of them launched into patient stories.
Sori Santana of PACT on her rounds
Sori told the story of Maria, a young woman with significant mental illness, a cocaine user, who was referred to PACT with a CD4 count of 4. (It should be around 1000; a count of 4 signifies a very weak immune system ravaged by uncontrolled HIV.) For four years, Sori visited Maria off and on in her home, riding life’s up and downs with her, always encouraging, supporting, never forcing. Yet she was never able to help Maria consistently take her medications. Then one day, something clicked. And Sori was there. Maria began taking her pills. She’s now getting stronger and has become a directly observed therapy specialist in her own right… showing up in her boyfriend’s bedroom with a cup of coffee in one hand and his psych pills in another- telling him that if he doesn’t get up and take his meds, she is going to “pull a Sori on him.”
Magalie recounted the story of Barbara, a 35-year-old Black woman with AIDS, diabetes, below the knee amputation, end-stage kidney disease on dialysis, stroke, and depression—living in an emotionally abusive home—who just couldn’t take it anymore. Barbara didn’t want to take her pills. More than anything, she just wanted to have her teeth fixed so that she could enjoy a piece of corn on the cob and to get the callous on her remaining foot shaved off so she could walk without pain. Magalie took her to the dentist and accompanied her to the podiatrist. She just sat with her, as Barbara breathed a sigh of relief for the first time in months. And maybe just maybe, at the next home visit, she might be able to talk about taking her Norvir again.
The PACT community health workers have demonstrated the power of accompaniment just as their cousin CHWs in Haiti, Lesotho, and Rwanda have. Although they share this common methodology, CHWs in different countries take on different challenges. In Haiti, CHWs help build tin roofs as well as hand out medications. In Lesotho, CHWs hand out shoes and blankets for warmth. In Boston, CHWs counsel on safe injection techniques for heroin users, manage homeless patients with psychotic illness, and contend with the patient’s conundrum of being poor and Black or Latino in a wealthy city that is a mecca of health care.
Accompaniment improves outcomes, reduces costs
With the proper training and support, these accompagnateurs effect results. Here in Boston, not only have we demonstrated significant clinical improvements in the majority of our patients, we have reduced preventable hospitalizations by 40 percent and cut overall medical expenditures of our Medicaid patients. Clinic-based practitioners have also come to value the role of the CHWs—seeking their services for more of their patients and welcoming their input in case conferences and during office visits. We have been creating, in essence, patient-centered medical homes that offer quality care at lower cost.
Over the next five years, PACT is expanding its scope of work to utilize CHWs for the care of patients with other chronic diseases, including diabetes, heart disease, pulmonary disease, and mental illness. A managed care organization that is a Medicaid vendor here in Massachusetts will subcontract with PACT to provide CHW services to its highest risk patients: those with the poorest outcomes, the worst health care utilization patterns, and the highest costs. Our hope is that our CHWs can complement the work of office-based practitioners, improve the health of these patients, and reduce preventable emergency room visits and hospitalizations.
If successful, we will have laid the groundwork for CHWs being recognized as legitimate health care professionals who deserve payer reimbursement and a place in the medical home … just as doctors, social workers, and nurses do.
Accompaniment is a beautiful thing. As practiced in the central plateau of Haiti, the foothills of Rwanda, or Boston’s inner city, it just may be the right phrase around which to reform health care, both here and abroad.
Dr. Heidi Behforouz is a staff physician at Brigham & Women's Hospital, an assistant professor at Harvard Medical School, and Medical and Executive Director of the Prevention and Access to Care and Treatment (PACT) project.
[published October 2009]