I'm on my fourth primary care physician in four years.
My first physician's practice dropped my managed care organization, feeling that it could not negotiate a rate adequate for the practice to survive. I was told to pick a new primary care provider from the organization's list. I'd barely met my chosen physician when, like so many others, my provider closed.
I was then offered the opportunity by my employer to choose a different health plan and a new primary care physician. This time I chose "point of service" coverage, which promised more provider choice. I met primary care physician number three. Three months later, I received a letter stating that she was turning her practice into a VIP program. As she shaved her practice from 3,000 to 200 patients, I could stick with her for an upfront annual fee of $1,500; she would still charge my insurance and I would still face co-pays and deductibles. Though reports indicate that this type of "boutique care" is growing and that it appeals to some, it struck me as excessively costly and exclusive.
That brought me to primary care provider number four. Meanwhile, as I bounced from one doctor to another, my children's pediatrician chose to leave practice, citing the pressure to provide "assembly line medicine" in the face of inadequate reimbursement, bureaucracy and rapidly increasing rates for malpractice insurance.
You might think that my bad luck was due to a lack of sophistication in negotiating health systems. However, I am a physician. As such, I've had the dubious distinction of having firsthand experience with limited primary care access twice over -- once as a consumer and again as a doctor.
Primary care has been defined by the Institute of Medicine, the advisory group of the National Academy of Sciences, as "the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of family and community." It is supposed to be the "medical home" -- the place where patients receive preventive care and help in negotiating our increasingly complex health care system. The primary care provider should know not just the condition of a patient's heart or kidneys, but the patient's overall health and how the patient functions in the context of family and community.
But in fact, an estimated 43 million Americans lack health insurance and another 36 million have no easy access to a medical caregiver because there are not doctors in their communities who are willing or able to care for them. In addition, among those that have a doctor, many report an erosion in primary care services.
In a large survey of adults published last year in the Annals of Internal Medicine, only 51 percent felt their primary care physician knew their medical history well. No more than that same razor-thin majority, according to lead author Dana Gelb Safran from Tufts University School of Medicine, felt their doctors knew much about their life circumstances.
Many families can provide examples of how lack of primary care has hurt them. Mine certainly can.
When my elderly father was hospitalized two years ago with a ruptured appendix and a subsequent heart attack, he had a surgeon who checked his wound, a cardiologist who checked his heart and an infectious disease specialist who checked his blood and tissue cultures. The surgeons took out the appendix, leaving a large open wound, and took him off the blood thinners prescribed by his cardiologist. The cardiologist recommended tests of his heart and restarted blood thinners, which made his wound bleed.
When, around three weeks later (one day after he was moved out of intensive care), my father was stable enough to be sent home, he was handed a stack of prescriptions written by one specialist without a follow-up appointment or knowledge if there was a pharmacy open that could fill his prescriptions.
Who was integrating the excellent piecework care he was receiving? Who was checking on how he and his family were dealing with his complex medical problems? I was able to help somewhat, but I lived thousands miles away. He needed a primary care provider who would act as an integrator of information about each organ system and a communicator who could help him, his care team and his family understand his situation and anticipate the next steps.
As a physician, I see the impact of lack of primary care on health. One 8-year-old girl with cerebral palsy recently came to our practice. She was a bright child but was severely limited by the poor maintenance of her physical condition. The family's troubles started with the diagnosis.
"We went to a lot of specialists, but I'm not sure what they all meant," her mother said. The girl was prescribed medications and equipment but did not get them because her family could not afford them and didn't know she was entitled to benefits that would help pay for them. Likewise, she didn't get the physical therapy she needed.
She had received some medical care, but from many different doctors who did not know or address the financial and psychosocial issues affecting the health of this child. Her family was stressed with her special needs and the needs of another chronically ill child. This girl needed help from someone who knew the issues facing this family and could integrate information and coordinate care.
More Sense, Less Cents
Research shows that Americans want a relationship with their primary care provider.
In a study published in the Journal of the American Medical Association (JAMA) in 1999, researchers surveyed more than 12,700 patients in managed care and found that almost all patients valued the role of the primary care physician as a source of first contact care and coordinator of care.
Safran, in her more recent paper, states that "the quality of physician-patient relationship -- including patient trust and a physician's knowledge of her patients -- is consistently the best predictor of important outcomes such as patient compliance and improved clinical status. But they are also the best predictors of important business outcomes -- such as loyalty to a practice and risk of initiating malpractice litigation."
These studies link a continuous relationship with a primary care provider to a wide range of positive health outcomes: higher trust between patient and physician, improved chronic disease management, fewer hospitalizations and emergency-room visits, timely immunizations and healthy behaviors.
Continuity in primary care relationships has also been shown to cut costs by reducing the likelihood of lawsuits and reducing unnecessary services. International comparisons of primary care systems underscore the value of primary care for health outcomes. In a 1991 JAMA study, Barbara Starfield, professor at the Johns Hopkins University Bloomberg School of Public Health, reviewed data from 10 Western industrialized countries on the extent of primary health service, health indicators (for example, infant mortality, life expectancy and death rates) and patient satisfaction in relation to overall system costs. Primary health services correlated with better health and public satisfaction in nine of the 10 countries.
American medicine, with its higher pay for specialty physicians than for primary care doctors, ranked low in the extent of primary health service, health indicators and public satisfaction. Within the United States, states with more primary care physicians tend to have better health indicators. Cross-national, national and individual patient studies have shown that continuity of relationships and primary care improve health.
My primary care practice in Baltimore -- a teaching practice with many residents -- diligently tries to provide continuity of care, but there are many challenges. The practice assigns patients to a single provider. But the assignments can't anticipate insurance changes that frustrate everyone.
Disruption of primary care is common. In the District, some Medicaid patients are switched among the six managed care plans providing services without patient or provider knowledge. Rachel Moon, director of the Children's Health Center at Children's National Medical Center, said that "switching is so common that we confirm insurance status the day before scheduled visits to ensure patients can be seen. It is common to find insurance problems for which the patient is unaware and appointments need to be rescheduled. This is not only poor service and a tremendously time-consuming chore, but it also risks delaying needed care."
For patients with private insurance, it is common for disruption in primary care to occur when employers change medical insurance plans, plan costs or coverage changes -- or when providers opt out. Under federal tax code rules affecting employers, if your provider leaves your insurance plan mid-year, you are not allowed to change insurance plans until open enrollment and must choose another provider.
I see firsthand the personal discomfort, medical confusion and service disruption that ensue when patients have to change providers. This is especially difficult for patients with complex, chronic medical conditions.
Even the Institute of Medicine, in a recent report, attributed problems of American health care ("the frustration levels of both patients and clinicians have probably never been higher," said the report) to the erosion of primary care, along with the bureaucratization and fragmentation of our health-care system.
The derailing of primary care is particularly troubling because the need for it has never been greater. After the Sept. 11, 2001, terrorist attacks, Moon said, "primary care doctors fielded a steady stream of inquiries about smallpox vaccination, the need for ciprofloxacin prophylaxis, how to deal with stress, terrorism and war." The emergence of new infectious diseases like SARS and environmental health threats such as lead in the water have also increased demands on primary care doctors.
Can primary care be revived? As a primary care physician, I try to find ways to lessen the burden on families by providing personal and accessible care, including on-site psychosocial services in our practice such as social work, psychology, substance abuse, nutrition and legal advocacy services.
I teach families how to negotiate the system and how to advocate for the health services they deserve. I tell patients I don't plan to go boutique. I teach future doctors about the value of primary care services.
As a consumer, too, I do what I can. I try to know my insurance plan options -- what the plans cover and what they don't.
Before choosing doctors, I interview them about their services, philosophy and insurance plan participation; I select those able to provide the continuous and coordinated health care that my family and every family deserves. I let my employer, my insurance company and policymakers know what I want and what primary care services must be covered to ensure my productivity.
But not everyone has such choices. And I am realistic enough to know even the ones I've made won't fully protect me or my patients.
As long as the health care system undervalues the most critical of doctor-patient bonds, I -- and others like me -- may have to get used to being health care nomads. Doctor number five, I know you're out there. I'm sure we'll meet someday.
Tina Cheng is chief of general pediatrics and adolescent medicine at Johns Hopkins Children's Center and part of the DC-Baltimore Center to Improve Child Health Disparities.