Archived Columns
Healthy Sleep: The Final Frontier
July 31, 2000
Imagine that a medical condition of epidemic proportion is killing thousands of people every year. Imagine that death is preceded by a long period of disability. Imagine that only 3-5% of the people suffering from this condition are diagnosed, and that the other 95-97% don't even know they have it. Imagine that this condition is extremely easy to recognize and that its symptoms can be completely eliminated by treatment at a cost that is about equal to the price of a desktop computer. If you knew all this, what would you do? Certainly, you might be upset, even outraged. But realistically, what could you do? In today's world, we know that the right thing does not always get done.
Of course, the medical condition is obstructive sleep apnea and we sleep specialists have known all of the above and more for many years. In spite of this, we have failed to foster an effective transfer of sleep-related knowledge to the general public and above all, to the millions of unrecognized victims of sleep disorders as well as the health professionals who care for them. Current scientific research which continues to improve our knowledge of diagnostic and treatment methods is only widening the huge gulf between what sleep professionals are now doing for humanity and what we could be doing. Whatever it takes, this tragic and unfair situation must be changed.
Congress Creates A National Commission
To foster such change became my personal crusade during 1990-92 while I was chairman of the National Commission on Sleep Disorders Research. This commission was created by the U. S. Congress to study the role of sleep and sleep disorders in American society, to specify problem areas, and to recommend solutions. After two years of investigation and hearing testimony about sleep disorders from physicians, family members, accident victims and sleep experts, the Commission identified two gigantic problems in American society: 1) pervasive sleep deprivation resulting in enormous costs in lives and dollars, and 2) epidemic numbers of undiagnosed and untreated or misdiagnosed and mistreated sleep disorders. Dramatic evidence supporting the second problem was the finding that in over 10 million patient records, obstructive sleep apnea was suspected or diagnosed only 73 times!
It was clear that the root cause of these two huge 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. This recommendation is excerpted from the Commission's 1992 final report to the U.S. Congress1, Wake Up America: A National Sleep Alert.
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 nationwide low level of awareness of the nature and impact of sleep disorders and sleep deprivation is a national emergency that must be addressed without delay! 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. The absence of awareness is so pervasive and complete, it can be changed only by a strong federal initiative."
"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."
A National Emergency but No Congressional Action
Sadly, Congress, in the throes of a budget crisis and a major political transition, was unable to respond. Part of the reason, of course, was the ongoing low priority of sleep disorders and sleep deprivation compared to other areas. In spite of the National Commission's strongly recommended solution, the health emergency it clearly identified in 1992 remains an emergency today.
My concern about the lack of sleep education was more recently validated by the results of the public awareness section of the 1998 and 1999 National Sleep Foundation Omnibus Polls, Sleep in America2. In both years, American adults scored worse than chance. These and other results demonstrate that as we embark upon the 21st Century, our society remains a vast ocean of ignorance about sleep disorders and even the existence of many small islands of awareness does not change this continuing stark truth.
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 a shocking 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 it's resulting knowledge must be transferred back to the public whose tax dollars paid for the research. 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 of knowledge transfer takes place. Our research institutions have generally not honored this obligation.
Today, scientific studies have revealed that millions of individuals suffer from untreated severe obstructive sleep apnea3. Clearly, countless victims of people with obstructive sleep apnea have, through the ages, died prematurely. My horror at this thought is only worsened by the knowledge that premature death, catastrophic illness or accident continue to remain the lot for most people with 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 on Sleep Disorders Research estimated that there were 38,000 deaths each year due to the cardiovascular consequences of obstructive sleep apnea. Adding a conservative 12,000 for all accidents secondary to impaired alertness, there have possibly been more than 400,000 unnecessary and premature deaths in the eight years since Congress failed to act. If we go back to the beginning of sleep disorders medicine, this number is probably well over a million U.S. citizens.I believe we can safely assume that sleep researcher Terry Young and her colleagues would have obtained the same results had their 1993 landmark study3 on the prevalence of obstructive sleep apnea 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 back then. Today, these are the individuals who are at death's door in primary care populations, and have spent years of misery with impaired daytime alertness and disability. In addition to studies done in Walla Walla, Washington, and Moscow, Idaho, I have been sufficiently involved in four additional primary care sites to state with confidence that the diagnosis and treatment of OSA and other sleep disorders remains for all intents and purposes completely absent in primary care medical practice. Once again, every severely ill sleep apnea patient must be identified and evaluated without delay, and offered the chance to avoid premature disability and death.
Case Histories Tell the Story
Let me provide a poignant example of what we don't do and what we could do by recounting old but still vivid memories of two relatively young doctors who were among our first patients soon after we started the Stanford Sleep Disorders Clinic in 1970.
The first physician was 41 years old, moderately obese, snored loudly, and knew his severe fatigue was not normal. Standard sleep testing (polysomnography) revealed very severe obstructive sleep apnea accompanied by extremes in heart rate that varied from extremely slow to excessively rapid to occasional absence of beats altogether. When he learned that the only effective treatment (at that time) was chronic tracheostomy (surgically creating a hole in the neck to aid breathing), 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 two months. Just about four 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 while listening to the breath sounds of a female patient with his stethoscope. To put it mildly, the patient was quite startled when his head came to rest on her naked breast! The physician's polysomnogram showed more than 50 obstructive episodes (cessation or substantial reduction of airflow) per hour of sleep, and very serious heartbeat irregularities indicating he was at high risk for sudden cardiac arrest during sleep. By this time, I had become convinced that allowing such a patient to refuse treatment was tantamount to affirming a death sentence. I confronted the young doctor and told him it was 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 health, and he has never wanted to give up the tracheostomy for newer treatments. Since tracheostomy allows effortless normal breathing every night, he may well live with a hole in his throat until he is 100 years old.
Major Risk From Other Sleep Problems
All other sleep problems remain mostly unaddressed. Pick up a newspaper on any day in any city and you will read about the tragic consequences of America's pervasive sleepiness. In early July, 1999, near Stanford University, a promising young woman who had just graduated from a local high school fell asleep at the wheel of her car. She and one of her friends were killed and others were injured. Had her high school curriculum or driver's training program included knowledge about sleep deprivation and the danger of drowsy driving, there is a strong likelihood that this tragedy could have been prevented. A student at a Texas University recently fell asleep at the wheel, swerved onto the sidewalk and killed six of his fellow students. Sleep deprivation played a significant role in the 1986 Challenger explosion, the Exxon Valdez grounding, and the Three Mile Island near meltdown.
I believe that there are societal forces now in motion that will push sleep-related issues forward until what my friend former Senator Mark Hatfield has referred to as "the vast reservoir of ignorance about sleep, sleep deprivation, and sleep disorders" is filled with knowledge and understanding. But these societal forces grind far too slowly. I ask every reader, "How would feel about the loss of your spouse or a loved one if you knew their death was totally preventable?"
I first struggled to achieve effective knowledge transfer through our professional organizations. Later, we submitted our final report to the U.S. Congress in 1992, I thought that it was a job well done and Congress would do the rest. I even had the forlorn hope that my recent book, The Promise of Sleep4, might do the job. Many individuals have been impressed by increasing media coverage of sleep though I remain skeptical that such coverage can produce effective and lasting change. If this is ever going to happen, I believe it will be through the internet and its various potentials and promise.
Moral Imperative: A National Program Now
After all these years of struggle, could we still hope for a sudden radical change in knowledge transfer that will bring millions of sleep disorders victims effectively into the healthcare system? The answer is a national sleep education program that is implemented now, not years or decades from now. The educational failures of the 20th Century must not pollute the 21st. We must do battle with all the firepower at our command.
No "weapon" in history is better suited for this battle than the internet which has emerged as the most powerful mass communications and education tool in history. It reaches across all ages, professions, cultures and economic boundaries. It can be as interactive or as passive as necessary. It is more democratic and less expensive than TV could ever hope to be, and can link communities, stimulate new ideas, and create a truly global community. It is the ultimate education tool and it has the potential to bring effective sleep awareness to all humanity.
For everyone who knows these things, working to bring adequate awareness to society and the benefits of treatment to those in need should be a moral imperative. As for me, after spending my entire professional career studying sleep and sleep disorders, and working to develop the clinical discipline of sleep medicine, my life will have meaning only when the huge reservoir of knowledge my colleagues and I have accumulated can be effectively disseminated on a massive scale. My only decision now is how to be more effective. For the cynics who say that behavior cannot be changed, I say that is not the issue. Without knowledge there can be no change. With knowledge there can be change, and countless lives can be saved.
One chooses one's weapons and allies carefully when engaging in this sort of battle. I've chosen to arm myself with the internet and ally myself with a company called SleepQuest. SleepQuest is a young innovative Silicon Valley company currently specializing in home sleep care diagnostic and treatment services for patients suffering from obstructive sleep apnea. I have chosen to work with them because they have made a solemn commitment to foster broad based sleep awareness and to support me in my mission to create a society sufficiently aware, so that the benefits of sleep research and the diagnosis and treatment of sleep disorders can be enjoyed by everyone.
Most people have never had any sort of organized education about sleep. The first step is that people must understand that sleep researchers have accumulated a huge and widely varying reservoir of knowledge that has remained backed up behind a high dam of ignorance and unresponsive bureaucracies. Our current situation is unprecedented. It is likely that never before in the history of the world has so much been known about a critical area of health and well being by a few specialists that is, at the same time, so completely unknown to the general public. While one option is to blow up the dam, it is possible that the flood of unorganized knowledge would be overwhelming. During decades of teaching Stanford undergraduates and medical students and training physicians to practice sleep medicine, I have been selecting, clarifying, organizing and presenting what I strongly believe are the relatively few facts that every person on the planet must immediately learn, thoroughly understand, and apply in their lives without delay. These will be systematically presented in this column in the weeks to come. This web site will be my lecturn in the implementation of high-quality sleep education.
I invite you to join me on this journey into the final frontier.
Footnotes
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; 328:1230-5.
4. Young T., Evans L., Finn L., Palta M., Estimation of the Clinically diagnosed proportion of sleep apnea syndrome in middle-aged men and women. Sleep 1997; 20:705-706
5. Dement, W. The Promise of Sleep. New York City, Delacourte Press, 1999.
<< Back
| Home | Privacy & Security | Search | Sitemap | Contact | Help |
| Copyright © 2002 SleepQuest. All rights reserved. |  |