Practice A Patient’s Journey

Sleep apnoea: from person to patient, and back again

BMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c360 (Published 30 March 2010) Cite this as: BMJ 2010;340:c360
  1. Peter C Gøtzsche, patient1,
  2. Søren Berg, chief physician2
  1. 1Copenhagen, Denmark
  2. 2ScanSleep, Nørre Farimagsgade 13, 1 tv, DK-1364 Copenhagen, Denmark
  1. Correspondence to: P C Gøtzsche pcg{at}cochrane.dk
  • Accepted 12 November 2009

The frustrations of the treatment offered for sleep apnoea made “being a patient” difficult

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.

A doctor’s perspective

Obstructive sleep apnoea is characterised by recurrent partial or complete obstructions (hypopnoea or apnoea) of the upper airways during sleep. If excessive daytime sleepiness or unrefreshing sleep and impaired daytime function is present, along with an overnight monitoring showing five or more obstructive events per hour, the criteria for obstructive sleep apnoea syndrome are fulfilled.

Symptoms of obstructive sleep apnoea almost always include snoring, but the intensity varies and is not correlated with the severity of sleep apnoea. Other important symptoms are nocturnal diuresis, gastroesophageal reflux, frequent awakenings, and restless sleep. Typical daytime symptoms are morning drowsiness, headache, and varying degrees of daytime sleepiness, concentration difficulties, and depression.

The number of sleep related obstructive breathing events per hour determines a severity index, the apnoea-hypopnoea index (AHI), where 5-15 is mild, 15-30 is moderate, and over 30 is severe. Obstructive sleep apnoea syndrome is defined as AHI >5, and excessive daytime sleepiness is normally approximated to 4% in men and 2% in women. However, obstructive sleep apnoea has been reported as occurring in up to 24% of men and 9% of women.5

Obstructive sleep apnoea covaries with cardiovascular disease due to the stressful effects of varying blood pressure, cerebral pressure, and repetitive hypoxaemia. The accompanying daytime sleepiness is a well known risk factor for traffic accidents.

For diagnosis of sleep apnoea, overnight polysomnography is the reference standard, but because of the high prevalence of the disorder, portable systems for home recordings have been developed. These should include measurement of airflow, respiratory effort, and pulse oxymetry. The portable systems differ in quality and do not include sleep electroencephalography, which is why time spent asleep has to be estimated. The sensitivity and specificity of the AHI therefore vary.

Generally accepted treatment modalities include mechanical interventions (continuous positive airway pressure (CPAP) or oral appliances (mandibular advancement devices, for example), surgical procedures, and “conservative” measures (weight reduction, lifestyle modifications). It is widely accepted that patients with severe sleep apnoea (AHI >30) should be offered CPAP as first line treatment, whereas patients with less pronounced sleep apnoea may benefit from an oral appliance and in some cases a surgical procedure.

As in any other medical condition, decisions on and choice of treatment for obstructive sleep apnoea require a correct diagnosis, balancing subjective symptoms and objective findings, and cooperation of the patient. This depends greatly on the amount of relevant information accessible to the doctor and the patient’s understanding of his or her medical condition and treatment options.

When deciding on CPAP treatment it is mandatory to give the patient detailed and correct information about the equipment and to choose the correct face mask. Follow-up after one week greatly improves patient compliance, as many start-up questions and misunderstandings may then be resolved.

This “patient’s journey” illustrates a case in which dramatic subjective symptoms apparently contrasted with the objective recordings. This is not unusual, and it underlines the importance of having and communicating correct information when evaluating, diagnosing, and treating medical disorders.

Søren Berg berg{at}scansleep.eu

Notes

Cite this as: BMJ 2010;340:c360

Footnotes

  • PCG thanks Steven Woloshin and Lisa Schwartz for encouragement to publish this patient narrative.

  • Competing interests: PCG is a medical researcher and SB works at a sleep clinic.

  • Provenance and peer review: Not commissioned; externally peer reviewed.

References

View Abstract