You would think that healthcare should be all about the patient, right? But in fact, it's long been recognized that patients often are treated like an after-thought by our health care system. Whether it is overly complex billing systems, lack of transparency in quality and cost, fragmented and uncoordinated care, or hurried, harried and inattentive clinicians, our healthcare system seems to be more about meeting the needs of everyone but the patient.
This is not a new problem. About 10 years ago, recognition that healthcare was failing so many patients led to a movement, called patient-centered care, to institute reforms to put patients in the driver's seat. A 2008 research paper describes the following six core elements of patient-centered care:
• Education and shared knowledge
• Involvement of family and friends
• Collaboration and team management
• Sensitivity to nonmedical and spiritual dimensions of care
• Respect for patient needs and preferences
• Free flow and accessibility of information
Such core elements became the building blocks for patient-centered medical homes (PCMHs), a redesigned way of delivering primary care to patients championed by the American College of Physicians (my employer), American Academy of Pediatrics, American Academy of Family Physicians, and American Osteopathic Association. According to joint principles developed by the four groups, "The PCMH is a health care setting that facilitates partnerships between individual patients, and their personal physicians, and when appropriate, the patient's family." Patients receiving care from PCMHs would benefit from having:
"A personal physician - each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care.
Physician directed medical practice – the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients.
Whole person orientation – the personal physician is responsible for providing for all the patient's health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care.
Care is coordinated and/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient's community (e.g., family, public and private community-based services). Care is facilitated by registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner."
Nine years since we issued those principles, It is now estimated that there are tens of thousands of PCMH physician practices. Many insurance companies now encourage their subscribers to get care from PCMHs, and starting next year, Medicare will be rolling out a PCMH program to 5,000 practices, which would encompass more than 20,000 doctors and clinicians and the 25 million people they serve, in 14 regions and states around the country.
All of this sounds fine and good, but now a reality check:
For all work done over the past decade to incorporate the PCMH principles and the elements of patient-centered care into healthcare delivery, the tragic reality is that too many patients continue to be failed by their encounters with American healthcare.
Take the case of Jess Jacobs, a remarkable young woman who died a few weeks ago from complications from two complex and rare diseases. Jess took the time to blog about her own experiences and it's not a pretty story. She reported that her primary care physician "surrendered" her care to other specialists, leading her to ask her primary care physician "If you are not willing and able to help me, who in your practice is?" She blogged about all of the time she wasted in getting appointments with doctors, by effort involved in trying to coordinate her own care, and in visits that she felt were not at all, or only slightly useful, to her. "So, please, stop wasting my time. . . Stop wasting my life" she wrote. She wrote of her heartbreak over the neglect that she, and a sickle cell patient in severe pain who shared the room with her, received during a 48-hour hospital stay.
But it's not just very sick and dying patients like Jess whom the system has failed. Sarah Kliff, a renowned healthcare journalist, recently blogged about her experiences trying to coordinate care for a chronic foot that left her so frustrated that it brought her to tears.
I wish I had an answer for why we are still not delivering patient-centered care to so many. But as I wrote in my own ACP blog about Jess' experience, I believe that the medical profession, and those of us who claim to advocate for patients, must acknowledge our failures. We must recommit ourselves to doing everything possible so that we don't surrender patients to a healthcare system that doesn't seem to care about them, and to advocate for reforms to truly put patients at the center of the health care system. This all starts with listening to patients, including those like Jess who now speak to us from the grave.
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