I met Sarah MacDonald in the early 2000s. She is the ultimate extrovert who sings, cooks, maintains a huge circle of friends, and lives life to the fullest–all at a pace & level most of us can’t imagine. In the early 2010s Sarah was flying high. Newly married, trying to get pregnant, all while being a Silicon valley business exec who had increasingly senior roles at eBay. Then in 2012 she was diagnosed with two completely separate types of cancer. And in her head “The Cancer Channel” started playing nonstop.
That became the title of her book. I just read it and I literally couldn’t stop. It’s practical, it’s heart-wrenching, it’s warm, it’s funny (yes, funny!). And it’s an amazing look at the exact experience of someone going through cancer. Or in this case cancer x 2. I was lucky enough to interview Sarah (so there is a very happy ending). So please watch this and buy & read the book
American healthcare has a customer service problem. No, customer service in the US is terrible when it comes to healthcare. No, the customer service in the US healthcare system is horrendous. No, healthcare has the worst customer service of any industry in the US.
There. That seems about right.
What makes me utter such a bold statement? Experience. I regularly hear the following from people when they come to my practice:
“You are the first doctor who has listened to me.”
“This office makes me feel comfortable.”
“I didn’t have to wait!”
“Where’s all the paperwork?”
“Your office staff is so helpful. They really care about my needs.”
“This is the first time I’ve been happy to come to the doctor.”
“It’s amazing to have a doctor who cares about how much things cost.”
“I just want you to know, I won’t have a colonoscopy”, my new patient said with some amount of fervor in his voice. “And I don’t want to take a lot of medications.”
I looked him straight in the eyes and said “This is America, you don’t have to do anything, and I work for you. My job is to help you know your options.”
He seemed to relax. I reflected on the words I had just uttered, yet another time – it is the way I often try to set the tone as a non-authoritarian, patient focused physician.
“You don’t have to do anything”, of course, only applies to the patient.
The doctor has to do a lot of things, like document a treatment or follow-up plan for Medicare patients with a BMI over 30, or provide computer generated patient education to a minimum percentage of patients, and achieve a certain percentage of e-prescriptions. And right about now, we are starting to see financial consequences if too many of our patients, like the man I had just met, don’t want to take the medications that can bring their blood pressures or blood sugars below certain targets.
Having said that, patient-centeredness was a truly odd choice to occupy a central role in the conservative casus belli that ended up disrupting the entire U.S. economy until the right wing finally caved.
To begin with, the term is a minor piece of jargon likely to draw blank stares from pretty much the entire American public. Even for us health policy mavens, the GOP letter linking James Madison on the redress of grievances to defunding Obamacare to a “restoration” of patient-centeredness required major mental gymnastics.
Then there’s the unintentional linguistic irony. The term “patient-centered medicine” originated after World War II with a psychoanalyst who urged physicians to relate to patients as people with physical and psychological needs, not just a bundle of symptoms. “Patient-centered care” further defined itself as exploring “patients’ needs and concerns as patients themselves define them,” according to a book by the Picker/Commonwealth Program for Patient-Centered Care, which coined the term in 1987. Patient-centered care was adopted as a “goal” by the Institute of Medicine, which added its own definition, in 2001.
But here’s where the irony kicks in. Obamacare opponents assert that the ACA undermines the traditional doctor-patient relationship – although I suspect that being able to pay your doctor because you have health insurance actually improves it quite a bit.
Yet in calling for “patient-centered healthcare” instead of the more common “patient-centered care” or even patient-centered medicine, conservatives unwittingly abandoned doctor-patient language in favor of business-speak.
He seemed a bit grumpy when he came into the office. I am used to the picture: male in his early to mid-forties, with wife by his side leading him into the office to “finally get taken care of” by the doctor. Usually the woman has a disgusted expression on her face as he looks like a boy forced to spend his afternoon in a fabric store with his mother. My office is the last place he wants to be.
He let himself down on the couch across from my desk with a wince, belying the back pain that brought him here. He looks around at my office, which is not only a place he didn’t expect to be, but not what he expects a doctor’s office to look like. First there’s the sofa he is sitting on, which is where my patients spend most of their time during their visits. Then there is my guitar just behind me. He and his wife comment on how their daughter would love the fact that I have a guitar, as she is into acoustic guitar music. Then there’s me, wearing jeans and an untucked button-up shirt, sitting back in my chair and chatting like an ordinary person. He seems intrigued.
He owns a business, which is a service type business like mine. Like me, he and his wife choose to do things differently, charging less for folks who can’t afford it. I chat with him about the stress and strain of owning and running a small business, pointing out how his choice is similar to mine.
He had actually suggested coming to me after he had seen me on television, but obviously had initial doubts as to the accuracy of the report. Spin happens. But as we talk, there is much to find in common, and he warms up. His shoulders relax, he sits back on the couch, and forgets he’s in the doctor’s office.
Consider the doctor’s office: the sanctum of care in American medicine, where a patient enters with a need — a question or an ailment or a concern — and leaves with an answer, a diagnosis or a treatment. That room, with its emblematic atmosphere of exam table and tiny sink and bottles of antiseptic, is in many ways the engine of our health care system, the locus of all our collective knowledge and all our collective resources. It’s where health care happens.
But in a less sentimental light, the doctor’s office doesn’t seem so exalted. Yes, it remains the essential hub for clinical care. But what occurs in that room isn’t exactly ideal, nor state-of-the-art. The doctor-patient encounter is fraught with tension, asymmetrical information, and flat-out incomprehension. It is a high-cost, high-resource encounter with surprisingly limited value and limited returns. It is too cursory to be exhaustive (the infamous fifteen-minute median office visit), too infrequent to create an honest relationship (one or two times a year visits at best), and too anonymous to be personal (the average primary care doc has more than 2,300 patients).
At best, it offers a rare personal connection between doctor and patient. At worst, it is theater. The doctor pretends she remembers the patient, and that she has actually had the time to read the patient’s chart in full; the patient pretends that he hasn’t spent hours on the Internet trying to diagnosis himsef, half-admitting what he’s really doing day to day, and pretending he won’t second- guess the doctor’s orders the moment he gets back to a computer.
As woeful as that sounds, we know that there’s real value here. This encounter can be meaningful; it should and must be meaningful. The doctor is a necessary interface to medicine, and his office is a source of care, expertise, and trust. The patient is eager and receptive to learning, primed for guidance and direction. Pragmatically, the doctor’s visit is a powerful part of modern medicine. The problem is that we, collectively, are not optimizing this resource; we have not reconsidered and re-evaluated how we might exploit the visit to its full advantage.
The promising platform is called Guahao (挂号网) and it claims to be China’s largest online appointment registration system. With a national network of nearly 4,000 hospitals, 600 being Level-3 hospitals, and over 300,000 specialists, it is hard to dispute it’s size.* Guahao began development in Shanghai 2010 in collaboration with the Chinese Health Education Network, Fudan Hospital and Healthcare Management Co., and the Chinese Hospital Association, and later expanded nationally. Guahao attempts to alleviate the bitterness patients endure during a typical hospital visit.
*It should be known that there are actually several online appointment registration systems in China; However, most are small, regionally splintered and have questionable legitimacy. Guahao is by far the largest and most well supported system in China.
China historically has not had a call-ahead appointment scheduling system. Patients throughout China have long lamented the country’s hospital queuing system, or the lack thereof. Patients arrive at the hospital, literally take a number, and wait for their turn – sometimes for over 24 hours. It is not uncommon to see throngs of patients and their family members outside of the hospital, camping out in makeshift beds to see a physician. A lack of appointment system puts pressure on the hospital’s health workers. Patient scheduling provides predictability of patient flow and allows for more efficient allocation of healthcare resources. Not to mention it makes for a much more patient-centered approach to healthcare delivery.
Years ago, as a family physician in Louisiana, I made house calls. Certain patients were too sick or too hurt to get to my office. Sometimes a condition or injury had worsened, requiring my evaluation bedside. I would visit patients at home for the simplest of reasons: home was where they needed care.
By the mid-1980s, the pressures of time and money prevented most physicians from making house calls anymore. But I kept seeing patients at home until I retired from my practice after 29 years. Home visits enabled me to better detect, diagnose and treat most health conditions. Many of the patients I saw might otherwise have wound up in an emergency room and eventually been admitted to a hospital.
If we hope to rein in health care costs and improve quality, we need, in effect, to bring back the house call. Americans are living longer than ever before and a higher percentage of the population is elderly, with both trends sure to accelerate drastically in the decades ahead. Baby Boomers are now turning age 65 at the rate of roughly 10,000 per day.
As the older demographic expands, so, too, does the number of people who live with chronic diseases, chiefly diabetes, high blood pressure and heart failure. About three in four of Americans age 65-plus suffer from more than one such chronic condition. The single biggest and fastest-growing contributor to healthcare costs is chronic disease. That’s why an estimated, 49% of our health care costs go toward 5% of Medicare beneficiaries.
Yet the U.S. health care system is still based on a massive misconception: that health care for the sickest of the sick, typically the elderly and the chronically ill, should be carried out almost exclusively in institutions, primarily hospitals, but also nursing homes and assisted living facilities. And that health care delivery should consist largely of, say, a trip to the emergency room or a four-day hospital visit for pneumonia. That kind of episodic engagement represents short-term thinking. When it comes to health care, hospitals are essential, but are only a part of the answer.
The Passenger Pigeon. The Dodo bird. The primary care clinic nurse. All are extinct, driven out existence by a changing habitat, competition and over-hunting. Ask the average person when they’ve last seen these species and you’re likely to get the same baffled look that your columnist’s spouse gives when she’s asked about her compliant husband who does what he’s told.
Yet, this columnist wasn’t aware of the primary care nurses’ total absence until a recent conversation with a nurse-colleague who has been helping smaller physician-owned outpatient offices develop local care management programs. “There are no ‘nurses'” she said. “They’ve all been replaced by office assistants and the docs are trying to get them to do the patient education.”
Which makes sense. While articles like this have been lauding health care “teams” made up of physicians and non-physician professionals for years, the fact is that poor reimbursement, the allure of other specialties and lifestyle has long-hollowed out these clinics, often leaving a skeleton crew of part-time medical assistants shuttling patients in and out of the patient rooms. True, some of the larger health systems with a stake in primary care have kept nurses in the mix, your columnist thinks that’s merely part of a market-preserving loss-leader strategy.
This columnist looked for medical literature on the topic. He can’t find any surveys or other descriptions on how nurses have largely disappeared from the primary care landscape. If he’s wrong, he wants to hear from his readers.
Policymakers, researchers, physician-leaders, and patients have all cited the need for care to be tailored to patients’ unique needs and preferences. And there is solid evidence that patient-centered care can help improve care quality and reduce costs. However, in the rush to become more patient-centered, the health care system has misplaced its focus.
Current approaches to patient-centered care are based on aggregated preferences rather than individualized needs. Researchers and health systems deploy focus groups and surveys to assess general patient preferences in an effort to determine “what patients want.” But patients are a diverse group with diverse needs. Characterizing general beliefs and preferences alienates those whose needs and preferences do not align with the majority. The result has been a monolithic view of patients and their needs — a framework that prevents the delivery of truly patient-centered care.
All service industries share the challenge of providing tailored, individualized service. In response, leaders in customer service have developed tools and infrastructure to understand and respond to individual needs and preferences. Health care providers should leverage these approaches.