Barbara Bokhour: Patient centered care in an epidemic—why it matters

Barbara G. BokhourAs the Ebola outbreak in west Africa continues, finding ways to control the epidemic is paramount. In some of the hard hit African countries, we have seen the reluctance of patients to disclose that they are ill and to access healthcare services, citing a fear of the health workers and believing that they will die if they go to the health centers for treatment.

Moreover, in the interest of limiting exposure to the virus, family members have been isolated from their loved ones who are infected and are prevented from conducting traditional burials when a patient dies.

One organization, Medecins San Frontieres (MSF—Doctors without Borders), has taken steps to increase the number of people who disclose early on that they are ill—by engaging families, and respecting social and cultural contexts. In Foya, Liberia, where the Ebola outbreak began, cases of Ebola have been decreasing; on 28 October it was reported that there had been no new cases identified in the prior month. What explains this success?

What caught my attention was the organization’s consideration of patient and family needs in the cultural context. MSF described several initiatives common to public health campaigns, including a phone-in radio show for people to ask questions about Ebola, and sending health promoters in the ambulances that pick up ill patients to explain to neighbors what was happening.

However, patients and family members required more than information, so MSF took their actions one step further. At the healthcare center workers allowed family members to visit at a safe distance, rather than completely isolating patients from their families. They allowed family members to watch when and where their loved ones were buried, rather than removing the bodies solely to contain the disease and without ceremony.

Most importantly, they began to consider the fear that visitors and patients experienced when seeing a healthcare provider fully suited in protective gear—unable to see the healthcare provider’s face, hearing a muffled voice, and feeling completely isolated. The MSF health center thus created a viewing area where visitors could see the faces of healthcare workers before they donned their personal protective equipment (PPE). So instead of having a faceless “astronaut” coming to their loved ones’ bedside and treating the disease, they at least had some sense of who that person was under the PPE.

There has been extensive discussion in the literature on the importance of developing adequate PPE for providers dedicated to taking care of those affected by the outbreak. They argue for gear that covers the body entirely, and which is easier to remove without risk of contamination. The one area that is overlooked is the need for such equipment to minimize emotional and empathic barriers between patient and provider.

Currently, PPE not only blocks the transmission of the virus, but also the transmission of empathy and caring that healthcare providers value when taking care of individuals. If patients could be less afraid and more connected to the healthcare providers, then they may well be amenable to seeking care earlier, thereby decreasing the risk of spreading the virus.

Thus one road to success may, in fact, be taking a more patient and family centered approach. Some may argue that being patient centered—taking into account what matters to individuals and tailoring efforts to address their sociocultural context—may be least important in the context of such a large public health crisis. The procedures put in place by MSF in Foya, however, demonstrate rather that patient centered care is not a frill or an add on; it is a necessity.

By taking into account the social and cultural contexts of individuals’ lives, we can promote not only individual health but public health. Attending to patients’ experiences, needs, and preferences—being patient centered—can foster trust and improve outcomes, even during an epidemic. Even in a crisis, we would do well to remember that medicine has its roots in working with patients fully as persons in context.

Barbara Bokhour, PhD is an associate professor of health policy & management at Boston University School of Public Health, and a senior research health scientist at the Center for Healthcare Organization and Implementation Research at the US Department of Veterans Affairs. She leads a center to evaluate patient centered care in the VA.

Acknowledgements: The views expressed in this blog are those of the author and do not necessarily represent the views of the Department of Veterans Affairs.

I have read and understood BMJ policy on declaration of interests and declare the following interests: None.