American College of Physicians: Internal Medicine — Doctors for Adults ®

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Endangered: diagnosing rare diseases under managed care

From the September 1996 ACP Observer, copyright 1996 by the American College of Physicians.

By Joshua R. Shua-Haim, FACP, and Joel S. Gross, FACP

Under managed care, physicians face increasingly difficult ethical dilemmas regarding patient care. Managed care often forces physicians to reconsider how to deliver health care in order to satisfy their masters (HMO administrators). This strategy is not always in the best interest of the patient.

Capitation, for example, encourages physicians to reduce hospitalization rates and use of specialists. Physicians can easily profit under capitation if they change their practice habits. HMOs encourage this new breed of managed care physician to practice "profitable" medicine, since both will financially benefit from it.

We anticipate that as a result of managed care, rare diseases will become even rarer, to the point that their diagnosis will virtually disappear. How is this possible? One of the many challenges facing the internist is the diagnosis of disorders that may require a great deal of physician time, testing, consultations and further investigations. Rare diseases fit into this category because they are costly to diagnose and require very specialized treatments.

Recently we cared for a 67-year-old man who suffered long-standing, poorly controlled hypertension. He had been seen by several primary care physicians, but none spent the necessary time to consider the rare causes of hypertension. He was compliant with medications, but still his blood pressure remained elevated. After an extensive history and physical examination, we decided to test for a rare but curable form of hypertension, a pheochromoctyoma.

This diagnosis was established and the benign tumor of the adrenal gland was successfully removed. The patient's blood pressure is now within normal limits. The total cost for all testing, consultations, physician fees and hospital charges was more than $50,000.

Would such a rare condition be caught in a managed care environment? And even if such a condition was diagnosed, would a managed care company feel the costs for the surgery were justified? To control costs, managed care organizations often discourage referrals to specialists and for hospitalizations. Thus the complicated and challenging elderly patient may not get the necessary services and consultants to be correctly diagnosed and treated.

One important way to determine the prevalence of rare conditions is to perform autopsies on patients. This procedure determines beyond any reasonable doubt whether certain illnesses have been misdiagnosed, underdiagnosed or improperly treated. HMOs we contacted did not disclose the percent of autopsies being performed in managed care settings. We feel that implies that the managed care companies do not wish to see if they are "burying their mistakes" or do not want to know if rare diseases were missed.

We feel that declining autopsy rates combined with limited availability of specialists in managed care may very well make the detection of rare diseases extinct in the near future. Managed care companies will not eradicate these conditions but will deter physicians from providing the time and access to specialists needed to discover them. We agree with the five proposals ACP outlined in the Feb. 15 issue of Annals of Internal Medicine regarding reformation of managed care. Additionally, we suggest HCFA might consider the following:

  • 1. HMOs and their administrators should not be allowed to dictate guidelines on how to practice medicine. This should be reserved for medical schools, universities and residency training programs.
  • 2. HMOs should not be permitted to dismiss physicians based solely on economic practice patterns but must also consider quality of care and cost-effectiveness.
  • 3. If a subspecialist wishes to practice primary care, HMOs should not be able to decline that service solely because of that physician's subspecialty training.
  • 4. HMOs should be regulated in a manner that allows participating physicians to practice as they were trained. If there is catastrophic illness, rare disease, or if an expensive work-up or treatment is needed, physicians should be able to practice to the patient's benefit rather than to the organization's financial advantage.

Joshua R. Shua-Haim, FACP, and Joel S. Gross, FACP, are internist/geriatricians at MedWise Center, affiliated with Jersey Shore Medical Center and Medical Center of Ocean County, N.J.

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