Effectively addressing the problem of sleep disorders will require a concerted effort by physicians, health institutions, and the government.
Federal, state, and private health institutions have failed to foster an effective transfer of sleep-related knowledge to the general public and, above all, to the millions of undiagnosed and untreated or misdiagnosed and mistreated victims of sleep disorders, as well as the health professionals who care for them. This failure is a matter of increasing concern and urgency. There is a large gap between what sleep professionals are now doing for our citizens, and what we could be doing. Whatever it takes, this gap must be closed. Because we cannot wait for teaching about sleep and sleep disorders to be a required part of the curricula of all health-related educational institutions and the eventual arrival of informed graduates as active practitioners, I believe that every effort should be made to educate respiratory therapists, nurses, and especially primary care physicians.
I have held this opinion since I served as chairman of the National Commission on Sleep Disorders Research from 1990 to 1992. This Commission was created by the US Congress to conduct a study of the role of sleep and sleep disorders in American society, to specify problem areas, and to recommend solutions. My fellow commissioners and I listened to testimony from more than 300 witnesses in 10 cities across the nation, received and read countless statements and letters, and organized several workshops to hear from experts. From all this, the Commission identified two overarching problems in American society: 1) pervasive sleep deprivation with huge costs in lives and dollars, and 2) a pandemic of undiagnosed and untreated or misdiagnosed and mistreated sleep disorders. Dramatic evidence for the latter was the finding of only 73 ICD-9 codes for obstructive sleep apnea in over 10 million computerized clinical patient records. It was clear that the root cause of these two problems was the complete absence of teaching about sleep at any level of the educational system. Accordingly, one of the National Commission’s six key recommendations for Congressional action was the immediate launching of a federally funded national awareness campaign. I quote from the Commission’s 1992 final report to Congress1:
“Although knowledge about the prevalence, individual impact, diagnosis, and treatment of sleep disorders has advanced significantly over the past two decades, American society as a whole remains at a very low level of knowledge and has limited understanding of the availability of treatment for these disorders. The absence of awareness is so pervasive and complete, it can be changed only by a strong federal initiative.
“The nationwide low level of awareness of the nature and impact of sleep disorders and sleep deprivation is a national emergency. Witnesses asked repeatedly, ‘How many preventable deaths are going to occur this year? Why don’t we save as many lives as possible now, not years or decades from now?’ The Commission has also concluded that the American public has been inappropriately denied the benefits of the research knowledge its tax dollars have supported. This situation must be remedied without delay.
“Therefore, the Commission recommends that a major public awareness/education campaign about sleep and sleep disorders be undertaken immediately by the federal government. The Commission recommends the addition of an annual appropriation of $3.25 million in new dollars to support this important public awareness and education function program.” (Excerpted from “Wake Up America: A National Sleep Alert. Report to the US Congress by the National Commission on Sleep Disorders Research.”)
As we all learned, a Congressional commission may not be able to solve the problem. Congress, in the throes of a budget crisis and a major political transition, was unable to respond effectively. Part of the reason, of course, was the ongoing low priority of sleep disorders and sleep deprivation compared to other areas. Sadly, the health emergency identified by the National Commission in 1992 remains an emergency today. If I was somewhat aware of the failure of knowledge transfer when my Commission chairmanship began, by the time its final report was presented to Congress, I was in a state of permanent anguish over what I had learned.
In view of all this, it is clear that my dismay could only deepen as I reviewed the results of the public awareness section of the 1999 National Sleep Foundation Omnibus Poll, Sleep in America. 2 American adults scored worse than chance on this measure. These and other results demonstrate that the public’s near-total lack of awareness of important facts involving sleep and sleep disorders has not changed appreciably. In the middle of the last year of the 20th century, our society remains a vast reservoir of ignorance about sleep disorders.
Given what we now know about the very high prevalence of sleep disorders and the effective treatments that have been developed, the failure of knowledge transfer in this area of the health care system poses an unprecedented moral and educational contradiction. Not only is it a moral imperative, but it is also an explicit social contract that federally supported health research and the knowledge derived therefrom must be transferred to the public whose tax dollars paid the bills. When universities and medical centers accept federal funds for sponsored research including high overheads, these institutions and their staffs assume a solemn obligation to make sure that the final step in knowledge acquisition takes place: an effective transfer of this knowledge to the American people in the form of medical practice advances, increased public awareness of diseases and their treatments, and increased motivation to engage in healthy behaviors through heightened awareness and understanding.
Today, scientific studies have revealed that millions of individuals suffer from untreated severe obstructive sleep apnea. 3 Clearly, huge numbers of obstructive sleep apnea victims have died prematurely in the past. My sense of horror is only worsened by the knowledge that premature death, or catastrophic illness or accident continues to remain the lot for most victims of obstructive sleep apnea, while the few who receive treatment can look forward to healthy decades added to their life span. On the basis of risk statistics, the National Commission estimated that there were 38,000 deaths each year due to the cardiovascular consequences of obstructive sleep apnea. Adding a conservative 12,000 deaths for all accidents secondary to impaired alertness, there have been more than 300,000 possibly unnecessary deaths since Congress failed to act.
Let me provide a poignant example of what we don’t do and what we could do by recounting still vivid memories from years ago of two relatively young doctors who were among the very first patients at the Stanford Sleep Disorders Clinic soon after it opened in 1970.
The first physician was 41 years old, moderately obese, snored loudly, and knew his severe fatigue and tiredness were not normal. Polysomnographic testing revealed very severe obstructive sleep apnea accompanied by extreme bradycardia, asystoles, and occasional brief episodes of ventricular tachycardia. When he learned that the only effective treatment (at that time) waschronic tracheostomy, he simply could not accept it. He decided that he would try to lose weight and see what happened. We asked him to return in 2 months. About 4 weeks later, I was reading the local paper and was greatly shocked to see his obituary. No cause of death was mentioned. I called the grief-stricken family and learned that the young doctor had died in his sleep.
The second physician, 40 years of age, sought us out after he had actually fallen asleep hovering over a female patient while using a stethoscope to listen to her heart. The patient, to put it mildly, was quite startled when his head came to rest on her naked breast. This physician’s polysomnogram showed more than 60 obstructive episodes per hour during sleep and very serious heartbeat irregularities, which put him at high risk for cardiac arrest. By this time, I had become convinced that allowing such a patient to refuse treatment was tantamount to a death sentence. I confronted the young doctor and told him his options: either undergo a tracheostomy or die. He accepted the surgical procedure.
Today, this physician is still practicing medicine and can look back on an additional quarter century of healthy, productive life. Soon after the operation, he experienced the miracle of restored alertness and good health, and he has never wanted to give up the tracheostomy for a nasal continuous positive airway pressure (CPAP) machine or other surgical approaches. Since tracheostomy is the most effective treatment, allowing effortless normal breathing every night, he may well live with the hole in his throat until he is 100 years old.
I believe that we can safely assume that Terry Young and her colleagues would have obtained the same results had their landmark study on the prevalence of obstructive sleep apnea reported in 1993 been carried out 20 years earlier. Correcting for a slightly smaller US population, at least 15 million Americans were in the early stages of obstructive sleep apnea (respiratory disturbance index [RDI], 5 to 15) back then. Today, these are the individuals who are at death’s door in primary care populations. Every severely ill sleep apnea patient should be identified, evaluated, and offered the chance to avoid premature disability and death. This should be a fundamental part of primary health care delivery.
I believe it can be. On March 24, 1999, Walla Walla was named the “Healthy Sleep Capital of America” by the National Sleep Foundation. I paraphrase the NSFproclamation as follows:
“Whereas in 1992, no patients from the town of Walla Walla had been diagnosed with specific sleep disorders; and, civic leaders, health care providers, educators, and townspeople of Walla Walla have committed themselves to increasing their understanding of sleep and sleep disorders and to practicing good sleep hygiene; and, all citizens of the Walla Walla population with serious sleep disorders are being diagnosed and treated; and, Walla Walla is educating future generations about the implications of sleep deprivation and untreated sleep disorders by developing curricula for the town’scolleges, high schools, and middle schools; therefore….”
The successful involvement of primary care physicians and through them the involvement of an entire community can happen only ifseveral physicians who have the respect of their fellows become committed to such an effort. The Walla Walla primary care physicians who stepped forward are Richard Simon, Eric Ball, and Jennings Falcon.
In this first project begun in 1992, outside intervention was necessary. The late German Nino-Murcia, MD, and I traveled to Walla Walla and presented a 2-day course on sleep physiology and sleep disorders. Following this, we scrutinized at random 752 course charts of patients seen at the Walla Walla Clinic to document the need for such a project. We trained a respiratory therapist in polysomnographic data acquisition and assisted the Walla Walla physicians in setting up a sleep laboratory. These physicians also took courses at the School of Sleep Medicine in Palo Alto, Calif.
Initially, polysomnogram recordings in Walla Walla were mailed to Nino-Murcia for interpretation. The Walla Walla physicians then began diagnosing and treating sleep disorder patients, and weekly telephone conferences were held to discuss all cases in detail. As the Walla Walla physicians became more comfortable with polysomnogram interpretation and treatment modalities, only problematic cases were discussed. Although most cases involved obstructive sleep apnea, other sleep disorders were diagnosed including restless legs syndrome, narcolepsy, delayed sleep phase syndrome, and psychophysiologic insomnia.
In order to provide the best management of patients, and because of the relative isolation of the community, the Walla Walla physicians decided to develop a full-service sleep disorders center. This center is now fully accredited and Richard Simon is a diplomate of the American Board of Sleep Medicine. Because of greatly enhanced public and professional awareness, all community physicians, including several specialists, refer patients to the sleep disorders center. At this writing, more than 2,000 patients have had polysomnograms. The results to date have been compiled, 4 and show that 78 percent of patients tested have very severe obstructive sleep apnea. The mean RDI is 88.
Although it is clear that the prevalences of obstructive sleep apnea and other sleep disorders in Walla Walla are very high, random samples were not systematically obtained. The opportunity to acquire more precise information on prevalence inprimary care occurred late in 1996 when John Grauke, a family physician in Moscow, Idaho, indicated a desire to add the diagnosis and treatment of sleep disorders to his practice. Every patient seen at the Moscow Clinic during a defined period from May 21, 1997, to February 6, 1998, was systematically interviewed by our project director. Based on unambiguous symptomatology, the prevalences of three major disorders within a typical primary care population were estimated as follows: obstructive sleep apnea was 23.6 percent (31.8 percent male, 16.7 percent female), restless legs syndrome 29.3 percent (27.1 percent male, 31.3 percent female), and insomnia symptoms 32.3 percent (29.7 percent male, 34.5 percent female).
Objective testing is solidly confirming the presumptive sleep apnea diagnoses. Only one of all patients tested thus far has not had obstructive sleep apnea. In addition, the degree of severity in terms of RDI is generally very high. The results of polysomnographic testing in Walla Walla and Moscow strongly support the following assumption. As victims of obstructive sleep apnea develop symptoms and come under a physician’s care, the underlying apnea condition is not recognized and continues to progress. We have no information on the incidence of obstructive sleep apnea, and so new patients entering the population and patients with mild degrees of severity remain invisible even in enlightened communities.
What is very clear and supported by a great deal of evidence is that very severe obstructive sleep apnea is likely to be associated with life-threatening bradyarrhythmias in addition to the risk of other catastrophic events. 5 Some percentage of unrecognized sleep apnea patients in primary care populations are truly at death’s door. In addition, all of these severely ill patients have impaired daytime alertness, aremiserable, and are often disabled. Reimbursement issues notwithstanding, there should be no hesitation in primary care medical practice today, at the very least, to recognize and deal with those individuals who are desperately ill.
We have been sufficiently involved in four additional care sites (total six) to state with confidence that the diagnosis and treatment of obstructive sleep apnea and other sleep disorders are for all intents and purposes completely absent in primary care medical practice. Everyone must work to change this. However, when the problem is this large and awareness is this low, adequate progress is extremely difficult. Because of this, I would suggest that sleep disorders medicine and the diagnosis and treatment of Americans in need should be fostered as a civil rights issue. This means that the societal processes of managed care and reimbursement constraints should somehow be temporarily set aside. Americans have paid for the knowledge that could be utilized to improve their health. Let us proclaim that every American has the right to a good night’s sleep, and this right should not be denied because historically sleep disorders and sleep education have been so badly neglected. Temporary remedial support is strongly indicated because societal ignorance about sleep disorders is still the biggest problem of them all. N
William C. Dement, MD, PhD, is the Lowell W. and Josephine Q. Berry Professor of Psychiatry and Behavioral Sciences at the Stanford University School of Medicine and director of the Stanford Sleep Disorders Clinic and Research Center in Stanford, Calif.
1. National Commission on Sleep Disorders Research. Executive Summary and Executive Report. Bethesda, Md: National Institutes of Health; 1993.
2. Sleep in America. Washington, DC: National Sleep Foundation; 1999:23-24.
3. Young T, Palta M, Dempsey J, Skatrud J, Weber S, Badr S. The occurrence of sleep-disordered breathing among middle-aged adults. N Engl J Med. 1993;328:1230-1235.
4. Simon RD, Ball E, Falcon J, et al. Sleep disorders in a rural community: follow-up of the Walla Walla project. Sleep. 1999;22:S239.
5. Becker HF, Koehler U, StammnitzA, Peter JH. Heart block in patientswith sleep apnea. Thorax. 1998;53:S29-32.