Published by ProHealth — by Lesli Hill, PAINS Project Volunteer Coordinator

The medical community has theoretically embraced the importance of the patient-centered experience. Almost every hospital describes their care as compassionate and focused on the needs and expectations of the patient. Part of this shift in thinking (from doctor or hospital-centered to patient-centered) may be the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS). HCAHPS is a patient survey that is randomly sent out to individuals who have been recently hospitalized at a facility. The government (CMS) then uses HCAHPS scores when they are contracting with hospitals to establish their Medicare reimbursement rate.

The IOM (Institute of Medicine) defines patient-centered care as “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”

Allowing patients to be fully engaged in their health care decisions is a good step. Yet, my recent in-patient stay at a hospital owned by a large for-profit corporation makes me question whether this new mindset is no more than just words on a website.

Many people live with pain inflicted not only by an illness, but also by the health care delivery system that ultimately holds the collective wisdom that, when applied, can improve their quality of life. Systemic failures of hospital systems to live up to those lofty, yet attainable, goals create patients who feel overwhelmingly victimized and fearful that no one will listen to them. There is a good reason for that. They are.

A recent hospitalization allowed me to experience this first hand, and I remain stunned by the realization that this is how so many people go through the health care delivery system and emerge physically and emotionally scarred. I have heard personal stories from those individuals. I have had conversations with them, sat with them in PAINS-KC meetings (PAINS Project), and I thought I understood the pain of being medically marginalized. I worked with many individuals in hospice care for almost two decades who were desperate to be heard, yet their voices were an inaudible whisper, drowned out by the superiority of a health system that didn’t care to listen.

I went into the hospital through the emergency room on a Sunday evening and came out four days later as an individual acutely aware of the top-down corporate failure to create a patient-centered environment of care. I have no illusions that it was just an experience limited to this one hospital or just one physician group. It is easy to preen about the outstanding patient experience, but far more difficult to be the patient who is experiencing the experience.