The Ridiculous Mouse

With the Health Insurance Portability and Accountability Act (HIPAA), regulations were introduced with the most strident of fanfares. While founded on the good intention of protecting our patients’ privacy, supporters who jumped on the subsequent political bandwagon created another piece of superstructure that is time and resource consuming. HIPAA has created a considerable impediment to obtaining potentially lifesaving information from other institutions or doctors—much to the patient’s detriment.¹ A new diversionary medical industry has been spawned—HIPAA compliance training—with consultants, workshops, and various media props to frighten us into acquiescence and convince us to pay obeisance to the new order. The Joint Commission on Accreditation of Healthcare Organizations is now inspecting how institutions are fulfilling HIPAA requirements. In the meantime, urgent problems such as the disproportionate cost of pharmaceuticals and the millions of people without healthcare coverage have been largely ignored, and various key areas of medical investigation have been left unfunded because of a philosophical debate regarding when and if a small mass of embryonic cells can be considered a human being.

It is hard to ascertain how much more secure patients’ personal data are as a result of HIPAA. Perversely, tucked into the middle of the act are regulations allowing patients’ records to be pried into by various agencies (national security, of course!) It is unlikely that electronic records can ever be made secure from the serious hacker unless highly complex encryption systems are used. Most databank operators have found that when such systems are used, the handling of data is seriously slowed—a disincentive, which, until recently, has inhibited use. A recent example occurred a few months ago when much of the nation’s banking and credit card records (40 million) were jeopardized when left temporarily unencrypted, allowing hackers access to the records. Because of the multiple formats, encryption of medical data is more complex and lacks uniformity.

The heavy-handed introduction of HIPAA was unnecessary, as most healthcare professionals already had been following the ethical principle of keeping patients’ medical information appropriately private. A primary concern for some years has been how to protect electronic patient data from those without a need to know. The recent scandalous examples of malfeasance and untruthfulness of too many big business leaders and some of our foremost politicians have reduced the public trust in the beneficence of anybody. The mountains labored, and the result was inconsequential at best or damaging to the welfare of our patients at worst. The paradox of this act is that it obviously has not increased the portability of our patients’ medical records and may have even had the opposite effect.

This year we witnessed the unfortunate political vehemence and fury surrounding allowing a patient to die a natural death when she had been in a persistent vegetative state for 15 years after an unwitnessed cardiac arrest. She had not a vestige of a chance for recovery. Computed tomography scans showed that her cerebral hemispheres had atrophied, and electroencephalograms showed that she was without any cortical activity. In this state, she was unconscious and thereby incapable of suffering. Nothing could have been meaningful to her. She was capable of breathing and various other vital functions and had a sleep/wake cycle. She could not see, a conscious phenomenon, but could react to various stimuli in a way that kept her parents from feeling that all was lost.² Because she could not swallow, nutrition and hydration were maintained with a feeding tube. Her parents could not accept the medical diagnosis and prognosis. Her husband (her legal decision maker in Florida) tried to have the feeding tube removed so she could die, but his well-intentioned efforts were frustrated by Schiavo’s well-intentioned parents who obtained a court order to continue tube feeding and hydration.

Governor Bush had taken up the parents’ cause in 2003, when the courts allowed the feeding tube to be removed for a second time. A state law was passed to have the tube reinserted. The courts later found this law to be unconstitutional.

This year, when at last Schiavo’s husband got a firm judgment to have the feeding tube removed for the third time, the name Terri Schiavo became well recognized. Tabloid newspapers even referred to “Terri” in their headlines and made the most of the bad relationship between her husband and parents. This time when President Bush became involved, his previous resolution on the right to die seemed to have changed, and he signed emergency legislation to compel the federal court to review Terri Schiavo’s case. This legislation was passed by Congress and signed into law. When the case was reviewed, and by a very conservative judge, the previous legal decision was upheld and Terri Schiavo died 13 days after her feeding tube was removed.

The folderol that followed was rather dismal, with angry conservative politicians threatening to reform the judiciary. His religious community disclaimed the judge (a respected conservative Christian) in charge of the review. The U.S. population was left feeling very uncomfortable, with polls showing 80% dissatisfaction with the way politicians had become involved. After all this effort and expenditure of time and resources, we are not in a better position concerning self-determination and the right to die. The mountains indeed were in labor!

It would be too pessimistic to suggest that everything goes the wrong way. If there is a good quality in the practitioners of critical care, it is the obsessive way that we pick appropriate nits. When it is well done, the mice in labor can produce a magnificent mountain! An excellent example is the demonstration of how paying meticulous attention to detail in intravascular catheter insertion can decrease the incidence of related bacteremia and sepsis virtually to zero.³ This study³ on eliminating catheter-related bloodstream infections in the intensive care unit produced no new techniques; its excellent outcome was related to the painstaking and meticulous following of established protocols regarding aseptic performance of the procedure with a check list and independent observer to ensure compliance during every step. Although the financial savings of such a program must be considerable, the saving of human life and suffering is incalculable.

Much labor was put into the Surviving Sepsis campaign.⁴ For many months, relevant national and some international critical care organizations worked together and agreed on the best way to manage patients who were either septic or potentially developing septic shock. The result was an easy-to-follow, evidence-based protocol, with a mechanism in place to update the protocol as new evidence became available. The dividends of this labor have been patients surviving sepsis who previously would not have survived, much of the damaging effects of sepsis being reduced in a unified and effective manner, and the first real progress against the largest cause of mortality in intensive care units.

Some labor must be considered a work in progress. Since the publication of To Err Is Human: Building a Safer Health System⁵ by the Institute of Medicine, the extrapolation of the number of deaths caused by error is still being quoted almost daily (at least 48 000 per year). Safety has become a major occupation in health-care. It is beginning to look as though this labor may pay off on a national scale, with patients being cared for in hospitals that are paying more attention to safety procedures than ever before.

It is a tragedy to think that all this effort can be brought to naught if someone does not wash his or her hands. Not all mice are ridiculous!