A friend of mine turned 55 this year. She has spent the last ten years in a long-term care facility on Medicaid. Eleven years ago she was a thriving lawyer north of Chicago. Medicaid and long-term care were not in her life plan. Then she had a stroke. She was perfectly fine one day, and the next she was in a coma, where she stayed for months. It did not take long for her to lose everything—her job, her insurance, her home, her car, her savings, her pets, her lifestyle. When the coma lifted, the right side of her body was paralyzed, and she found she had lost yet more—her front teeth and her ability to speak clearly, to stand, or to move from bed to chair—or anywhere—without assistance. What she kept was a clear mind, a functioning left arm, a small voice, and a strong will. What she gained was a wheelchair and a very new life experience.
Occasionally, her condition deteriorates to the point where she needs hospitalization. Last year, it was bedsores. She was in the hospital for five days. During that stay, she lay “in the middle,” a place Steiger and Balog describe in their lead article. Nurses, aides, technicians, and doctors talked over and around her; when she spoke, she was ignored. In one instance, her IV dislodged, and she tried to tell the nurse, who had come into her room for a routine check, about the bleeding. The nurse didn’t see her or hear her. Instead, she left the room as the unseen blood quickly pooled at her patient’s side. My friend found herself in the situation that Don Berwick describes in a quote that Taylor and Rutherford share in their article. In it, Dr. Berwick says, “What chills my bones is indignity. It is the loss of influence on what happens to me…homogenized, anonymous, powerless, no longer myself.” This is the antithesis of what patient-centered care is all about.<\p>
Patient-centered care is about the patient’s role in his or her own healthcare. In a patient-centered culture, patients are fully included in decisions about the small and large elements of their lives in the medical delivery environment. To accomplish such a culture, we have to let go of the assumption that our perspective is identical to the perspective of the patient. We need to examine the routines that make our lives easier but leave the patient waiting, wondering, fearing, and resenting. We must, as Taylor and Rutherford tell us, “forge a partnership with patients and family, to share decision making, to put patients in control, to share openly with each other.” For healthcare providers and staff, the authors note, this means internalizing new ways of thinking, seeing, and behaving. This kind of change requires “developing new habits of mind and perspectives, where we become more inclusive of diverse viewpoints, more permeable, more reflective and differentiated.” This will not be easy.
Such a transformation requires leadership. Before writing his commentary, Patrick Charmel read the article by Taylor and Rutherford. He recounts how he took them up on their advice to spend an hour interacting directly with patients and their families in the inpatient units. He shares compelling vignettes and his reactions to what he learned during those visits. Both of our commentators, Mr. Charmel and Ms Cliff, are CEOs of Planetree’s “Designated Patient-Centered Hospitals,” of which there are only ten in the United States. Both bring pragmatic and inspiring perspectives to this discussion.
The story above about my friend left off with her bleeding in her hospital bed. Fortunately, an aide from the long-term care facility took personal time to drop by for a visit shortly after the nurse left the room. Care quickly became “friend-centered,” and the IV issue was addressed. The aide knows about patient-centered care, though she’s probably never heard the term.