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Here's on doctor's prophecy:
Endangered: diagnosing rare diseases under managed care
http://www.acponline.org/journals/ne...96/raredis.htm
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.
Why diseases regarded as rare become "rarer" due to failure to diagnose 
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