Sleep apnoea: from person to patient, and back again

There was no doubt about the diagnosis. My sudden loud snoring bouts woke up not only my wife but also me. The bouts were dramatic, like a deep sea diver gasping desperately for air after a world record attempt, or the roar of a ferocious animal just before the killing attack. Despite having spent eight hours in bed, I was sometimes exhausted and sweated during the day. Occasionally, I had irresistible urges to sleep at inconvenient times—when driving or during a dinner with guests, for example. The urge could be so pronounced that it felt very “painful,” in which cases I had to leave the party to get a nap, with the excuse that I didn’t feel well. This was certainly true, and it sounded better than to say I was tired.

I finally gave in to the symptoms and visited an ear, nose, and throat specialist, who handed out some equipment to monitor the sleeping pattern. As expected, the electronic recordings showed apnoea periods, which lasted up to a minute. The surgeon first suggested removing the uvula and possibly other tissues. This made me think of Mark Twain, who remarked that to a man with a hammer everything looks like a nail. I declared that under no circumstances would I accept surgery, which was not only irreversible but could also be harmful. Furthermore, I told him that there were no data from randomised trials that showed such surgery worked.1 2 The surgeon then suggested using continuous positive airway pressure (CPAP), which I accepted, not knowing that its benefits in mild to moderate sleep apnoea are inconclusive.2 He referred me to a sleep centre, and I asked him to send a copy of his file with the recordings to the centre so that they would be available when I arrived.

The first thing the sleep specialist wanted to do was to make sleep recordings. It did not seem to matter that another specialist had already done them. I protested and told him that new recordings were unnecessary, as the diagnosis was indisputable. It then turned out that he had not received the recordings, but I insisted he should request them, rather than subjecting me to a superfluous test.

The missing recordings were not really a problem for the specialist, however. He unpacked a CPAP set and explained carefully how to use it. He mentioned that I could get a special permit allowing me to carry the apparatus as hand luggage when I was flying. I explained that I did not intend to carry it with me when travelling, as I did not feel that sick. I had sometimes cared for patients at an intensive care unit who were equipped with similar apparatuses, and I did not want to look like a desperately ill patient.

The specialist explained that, to allow people to fall asleep, it took 20 minutes before the apparatus started working after it was turned on. He also said that if the inhalation pressure was too high I could adjust it, but he did not tell me how.

Back home, I unpacked the CPAP apparatus with great suspicion, feeling badly about my new role as an intensive care patient. I usually fall asleep within a minute or two, but now I was wide awake, counting the minutes till the apparatus started working. When it started, it blew me up like a balloon. It was very unpleasant and after a while my throat dried out. I consulted the instruction manual, which was about a hundred pages, but could not find any description of one of the most essential functions, how to reduce the pressure. I gave up, dismantled the machine, and slept immediately. My wife convinced me to give it another try the next evening, but the same sequence of events unfolded.

On the third day, I decided to read the instruction manual more carefully and found a page, which, considering its dire text, curiously was not located at the beginning of the manual. It said that under no circumstances should one use the apparatus before having read that particular page. Reading on, I discovered that there was no guarantee that the apparatus would not kill me. I figured out that if it malfunctioned, I would reuse my own breath and die peacefully without triggering any alarm bells and without any intensive care nurses rushing to my rescue. Startled by this, I searched PubMed and the internet but found no data on the risk of this lethal complication.

I decided that the inconvenience of my condition did not justify any risk of dying because of the treatment. I had consulted the medical literature before I saw the surgeon and knew that observational studies indicated that sleep apnoea increases the risk of cardiac disease. But so many things in life increase that risk, and observational studies can be misleading. Prolonged oxygen deficiency may not be good for the heart, but I have no risk factors for heart disease and do a lot of sports. Thus these observations didn’t count in my private decision analysis.

At the next visit to the sleep centre, the specialist asked me how it went. I told him about my experience and deliberations and returned the equipment. To my surprise, he told me that since my sleep apnoea was mild, he would not have recommended the apparatus in the first place. He had now received the recordings from the surgeon, and again to my surprise, he seemed to base his judgments on “laboratory values” rather than on the patient’s symptoms. He also said that CPAP was considered to work only at certain ages and was not recommended after age 70. I replied that, approaching 60, I saw no reason to use this terrible, “patientising” apparatus, which might even kill me, in this little time window.

I told my story to two colleagues and one of them remarked that most patients cannot tolerate using CPAP for sleep apnoea. He sent me a paper that had found that only two of 35 patients used CPAP for seven hours for at least 70% of the nights.3 It would have been nice to know this beforehand, as I would then not have felt so awkward when I tried to use what I felt was like firing at sparrows with a cannon, as my problems were not life threatening. If I had also known about the BMJ review that questioned the effect of CPAP in mild to moderate sleep apnoea I would not have consulted a doctor in the first place.2

My short guest visit as a patient was alarming. Worst of all, I had lost my autonomy when having appointments with doctors who told me what to do, and became a patient who other people might pity. I do not want any of that. I dropped the patient role, as I am not patient enough to consult doctors unless I am really ill.

A case always has three sides: yours, mine, and the correct one. My two doctors were pleasant and skilled colleagues. If this account has been unfair to them in any way, or inaccurate, I apologise. But what I have described is what I felt. And I believe we can learn a lot from patients’ narratives.4 What strikes me most from my own “patient visit” is that it is grossly unfair that a doctor like me, who does research and is used to searching for the best available evidence, is privileged in comparison to the vast majority of patients who cannot do this and therefore hope—and usually also think—that the doctor knows best. That is not always the case.