Despite the dizzying pace of change in medical and surgical therapeutics over the past 50 years, sound medical practice continues to rest on the same fundamental principle: a relationship of trust between patient, family, and physician.
Developing that relationship takes time: time to listen; time to understand the sources of distress; time to make the diagnosis and sort out therapeutic alternatives; time to help patient and family appraise the pros and cons of the treatment options; time to help them make a thoughtful choice; and time to support the patient in sticking with the treatment or changing it if it isn't effective. Time is not measured simply by the duration of individual visits, but by the multiple visits needed to provide continuity and to establish lasting ties over the years a child develops. My comments are entitled “Time Is the Currency of Pediatric Care.” I have done so to highlight the importance of unhurried consultations and continuing relationships in an era when chief executive officers reduce time to money, pure and simple. Why do I insist that time is the currency of care? The pace and change of therapeutics since I graduated from medical school are extraordinary. Antibiotics have transformed bacterial infections from dramatic and frightening episodes into readily manageable and commonly routine affairs. The dreaded sequelae of the viral infections of childhood have come under almost complete control by immunization. Not long ago, the diagnosis of acute lymphcytic leukemia in a child was a death sentence; only 1 out of 10 patients was alive 2 years later. Today the odds have been completely reversed and 3 out of 4 patients appear to be permanently cured.
However, these and the other triumphs I have witnessed have only increased the central role of medical care. Paradoxically medical advances have led to the substitution of chronic for acute disease, as a major challenge to the physician:
Neonatal intensive care units have achieved unimagined success in salvaging very low birth weight infants, but at the expense of handicapped survivors in need of special services coordinated by a pediatric generalist.
Whereas diabetes was once an acute and rapidly fatal disease, insulin has changed it into a chronic condition requiring complex new skills to manage its renal, vascular, and ocular consequences.
The “new morbidity” identified by Haggerty and colleagues1 two decades ago has become an ever more prominent part of the challenge to pediatric care: behavior disorders, child abuse, adolescent violence, alcoholism, smoking and substance abuse, teenage pregnancy, and childbirth.
None are susceptible to quick technical fixes or a one shot sound bite of advice. The patient-physician relationship, always central to care, has become even more critical in the era of chronicity. The effective management of long-term conditions, for which there are no magic bullets even though there may be useful palliatives, requires that the family and child to adhere to long-term treatment regimes that are often onerous and complex. Understanding why these regimens are necessary and what benefits they bring is key to adherence. It is the pediatrician whose task it is to help families become educated consumers. For families to believe that the doctor has presented the facts fully and fairly, they must have confidence in their physician's integrity.
If patients are to have that confidence, the clinical decisions physicians make must be income-neutral. The commitment of the physician should be to the patient, not to his own pocketbook, not to the patient's employer, not to the stockholder or the managed care organization, not to the medical profession, not to the government, but to the patient. We are being urged to take the lead in restraining costs by denying specialist care even when it would benefit the patient. Respect for the autonomy of the patient, the first principal of medical ethics, demands truth-telling. It precludes gag rules requiring the physician to withhold the information that clinical judgment has been countermanded by a management decision favoring profitability. Will any patient trust any doctor if doctors are at risk for the cost of the care they prescribe?
We are agreed, that the problem of trust was there before managed care was even dreamed of. Fee-for-service tied medical income to medical activity. The more the doctor did for, or to, the patient, the more the doctor earned. Early in this century fee-splitting arose. Ninety years ago in this city in his presidential address to the American Medical Association, the surgeon William J. Mayo2 drew attention to the basic evil of fee-splitting.
“The one crying evil … is the giving of commissions—in other words, the selling of the confidence the patient has in its practitioner—to some specialist who will divide the fee in return for the reference of the case … The very fact that it is secret shows that both parties are ashamed to have it known … ”
What language shall we use for secretly selling the patient's confidence in the practitioner for nonreferral; that is, by contracts that reward the doctor for fewer referrals, fewer diagnostic tests, and fewer days in the hospital—and put the doctor in financial risk if aggregate cost exceeds a specified ceiling.
True, less may be more when the specialists not consulted, the invasive tests averted, and the hospitalization avoided would have put the patient at risk. Indeed, eliminating medical treatments of dubious value and eliminating unnecessary surgery would achieve better health and lower costs.3 But the principle guiding rational medical care should be health outcomes, not bottom lines. Health care is a public good that the “invisible hand” of the marketplace simply cannot provide equitably to all citizens in need.4
Shortchanging time with patients sacrifices quality in care. In a study by Tufts investigators, Kaplan and her colleagues5 reported on almost 8000 adult patients who consulted physicians in a variety of practice settings. The patients were asked about the extent to which their doctors had invited them to participate in making treatment decisions and in taking control of their own treatment. The patients who gave their physicians high ratings on those characteristics were more satisfied with their care, and half as likely to change doctors during the next year. Physicians whose average interview times were <20 minutes had significantly lower rankings on participatory decision-making. It is not simply that the patients are more satisfied with their doctors. The fact is in four randomized trials of participatory, continuing contact for patients with ulcer, hypertension, diabetes, or breast cancer, better health outcomes resulted when the patient had greater control over his or her own care.6 As Ireys and his colleagues at Johns Hopkins7 have recently pointed out, pediatricians play a crucial role in assuring access to an appropriate range of high-quality services for children with special needs.
To assure that comprehensive care for such children is not destroyed by managed care will require vigilance by pediatricians in redefining the concept of medical necessity to include all the needed components.
Doctors make a difference, even when the course of disease cannot be altered. Early in my career, one of the senior pediatricians in Baltimore, Dr Matthew Debuskey, told me that the families of his leukemic patients were among those most grateful to him, despite his having, in those days, no active treatment to offer. His comment puzzled me, until I watched him care for severely ill children and their parents. Then, I understood. The confidence he gave them that everything possible was being done, that if all else failed he would minimize the child's suffering, and that he would be there for them after the child's death if it came to that, is beyond price. Can we put a dollar value on supporting a family during death? Is there a cost-effectiveness equation for human solidarity? If care doesn't lead to cure, does that mean it doesn't matter?
Let me conclude by reporting a carefully done scientific experiment to measure primary care. McDermott and his colleagues8 conducted a pioneering health care experiment between 1956 and 1962 at Many Farms, a Navajo community on a large tribal reservation. The Native Americans were illiterate, had little cash income, and lived in extended families in 1-room log and mud dwellings with dirt floors and no windows. The infant mortality rate was three times higher than the US average. There were no physicians in the community and the nearest hospital services were many miles away. The matter was put before the Navajo tribal council, which enthusiastically welcomed the Cornell researchers.
Professionals and tribespeople alike confidently anticipated significant improvement in community health. Unhappily, the results were disappointing. Neonatal mortality was unchanged; despite some reduction in tuberculosis and otitis media, there was no change in the prevalence of acute trachoma or of the pneumonia diarrhea complex, the major causes of illness and death.
Why? All four of these diseases are microbial diseases that are readily transmitted in crowded, poorly ventilated housing, but differences in pathogenesis accounted for differential outcomes. Exhaustive case finding followed by effective drug therapy reduced the transmissibility of tuberculosis although it didn't eliminate it. On the other hand, pneumonia and diarrhea were caused by organisms unresponsive to the available drugs and continuously recirculated among household members. Although the physician managing the individual child could see improvement in response to medical care overall rates of morbidity and mortality remained unchanged because transmission continued.
Looking back on the program, McDermott acknowledged that a physician-based health system for delivering primary care in such a community was a poor choice, but it was what the Navajo community itself wanted. What the program did do for the families is best conveyed in his own words. I urge you to think about this.
“Because of the nature of medicine, as a practical matter, its technology [sometimes] has to be deployed irrationally … Who can measure the value obtained by those Many Farms parents who could see obviously expert professionals hovering over their child, desperately ill with pneumonia, caused by respiratory syncytial virus? They see someone making a fight. To point out that, in the particular circumstances, the penicillin the child is receiving happens to be valueless in a technological sense, would seem to be a petty, if not callous, irrelevancy.”
- ↵Haggerty RJ, Roughman K, Pless I. Child Health and the Community. New York, NY: John Wiley and Sons; 1975
- May WJ
- ↵Institute of Medicine. America's Health in Transition. Protecting and Improving Quality. Washington, DC: Institute of Medicine Council; 1994
- Ireys HT,
- Grason HA,
- Guyer B
- McDermott W,
- Deuschle KW,
- Barnett CR
- Copyright © 1998 American Academy of Pediatrics