Death on CPAP therapy?

[sharonious]

Those articles linked in an earlier post indicated that of those diagnosed with SA about 50% who die of heart attack do so during sleep. They also state that they are not sure of CPAP compliance at the time of death and preceding death. Wouldn't a mask on the face and a running machine be proof of compliance at least on the night of death? Or, if the deceaseds had APAP (widely advocated on this board), wouldn't there be proof of compliance, specifically dates, times, hours of useage, etc., on the software, including the exact occurrences preceding death? But since I don't have APAP, perhaps I overestimate its data-collecting abilities. For the sake of research (and the lives of millions of people), APAPs should be handed at no cost to research subjects (ahem, all of us). Should we be discouraged that those diagnosed and under treatment are dying at night? Or, could that about 50% be something low like 2 out of 4 per 1 million patients? Signed: Sharonious, so likely Erroneous, especially after a night where mask slipped and I awakened short of breath and with caved in feeling in chest (which I don't do without therapy).

[Mikesus]

All they know is that it changes the TIME that you die.

"We didn't show that sleep apnea increases the risk of sudden death at all. It changes the time," Somers, a cardiologist, said in a telephone interview.

http://english.epochtimes.com/news/5-3-31/27375.html

To me that is a good thing, would hate to be right in the middle of a good post on cpaptalk.com and kick the bucket.

[sharonious]

I was more concerned that they couldn't tell whether those apnea patients who died during the night were compliant with CPAP. It seems to me that they could determine compliance with good record keeping. And, I'd like to think that those compliant were less likely to ruin a good night's sleep by dying ( particularly since I am compliant at this point ).

[rested gal]

Good point, Sharon. I've got a suspicion that the already poor "official" compliance estimate of...what.. 60% are "compliant"...is grossly overestimating how many people actually use their machines and how long they use them during a given night.

For one thing, there's the definition of "compliance". I may be mistaken, but I believe Medicare (and probably most insurance companies, since they often follow Medicare's lead) define compliance as using the machine 4 hours per night. And that might even just be using it an "average" of 4 hours a night. Well, 4 hours with the machine on and two or three or four more hours sleeping without it - that's a LOT of unprotected time, imho.

Besides, I've not heard of many people who get a call from their doctor or DME telling them "Bring your machine or card in - insurance wants us to check the compliance data."

My uncle, for example, is on Medicare. He was diagnosed with OSA over ten years ago. Regular as clockwork, his DME checks in with him once every THREE YEARS or so to let him know it's time for a new machine. He has been almost totally UNcompliant all those years due to a miserable mask, no heated humidifier and straight cpap blowing 12 cm at him. He was using the machines they gave him over the years..."using" them at most once a week, but mostly not at all for months at a time. Yet no one at the DME ever checked "compliance" and Medicare kept right on paying. Maybe they did check it during the first year, but ...what about the next nine years?

So, there he's been all this time, one more little tick mark fattening up the "compliant" side of the ledger - but actually about as UNcompliant as a patient could be, and still be able to say, "Yeah, I use it." if he were ever asked.

Given the lack of follow-up by so many DMEs, if a patient is not coming back to them complaining about a mask or saying, "I still don't feel rested.", they'll fall through the cracks. They'll still be listed as "compliant" on the books, but they may be the very ones that are not using their machines and are dying in bed between midnight - 6 a.m.

But they had sleep apnea and were on cpap, ya know. Or...were they? Good question, Sharon.

[LDuyer]

Rested Gal,

Your story about your uncle and about compliance has gotten me thinking (always a dangerous thing!).

Whose responsibility is it to ensure "compliance"? The patient's, sure. But when you think of every other types of chronic conditions -- diabetes, heart conditions, thyroid problems, asmthma, etc. -- those patients are monitored by their doctors on a regular basis, aren't they? They may not be checking up on whether their patients are taking their meds or whatever, but the periodic required check-ups are the way the doctors monitor the patients "compliance" of their therapy, or problems occurring during even good compliance. And patients expect to be monitored in this way. So why is it our condition isn't viewed that way? Now that I'm hooked up, why does my doctor, who is one of the more knowlegable ones being a pulminory doctor seeing scads of OSA sufferers, want me to return some six months later? Why not three? Why not monthly until there is successful "compliance"? And we as patients don't often know any better. It's difficult enough understanding this thing, so we can forget it's a condition like all others and we should have frequent follow-ups.

Just thinking aloud, so to speak.


Linda

[Mikesus]

I was more concerned that they couldn't tell whether those apnea patients who died during the night were compliant with CPAP. It seems to me that they could determine compliance with good record keeping. And, I'd like to think that those compliant were less likely to ruin a good night's sleep by dying ( particularly since I am compliant at this point ).

As long as its not shortening your life dying in your sleep could be a good thing... Guess we all need to remember to wear clean undies just in case.

[ozij]

Your story about your uncle and about compliance has gotten me thinking (always a dangerous thing!)....
Why not monthly until there is successful "compliance"?

Linda,
It's even worse than you think, since they've got research to show that a little bit of follow up goes a long way to help compliance in the first weeks. For instance http://www.talkaboutsleep.com/sleep-dis ... tract9.htm

But, this compliance issue is very much a behavioural one - not one to do with your body chemistry... so - no go.

Blood pressure is the cheapest thing in the world to monitor - which is why it is so popular (and you've got people monitoring their own.
My guess it that in a few years straight CPAP without monitoring progarms will go the way of monochrome computer screens, and eventually, many of us (or the next genration) will be sending their reports to the doctor's office on the net, - or at least be instructed when the results indicate that a non-regular appointment will be indicated.
O.

[rested gal]

Here's something I posted on another message board back in December.

http://www.talkaboutsleep.com/message-b ... php?t=4659

Dec 30 2004 subject: An old UK study about support/compliance

As we all know, far too many cpap users drop out soon - quitting treatment for one reason or another.

An old (1999) but interesting study conducted in England on 80 patients to see if intensive support early in treatment would increase compliance. The machine used was the old ResMed "Elite" straight cpap. Interestingly, the study also compared compliance rates between patients who actively sought out treatment, and those who may have been dragged to it by a partner (who was probably complaining about the other's snoring and gasping.)

Can Intensive Support Improve Continuous Positive Airway Pressure Use in Patients with the Sleep Apnea/Hypopnea Syndrome?

______________________________________

Under "Support Protocols":

Standard support. After undergoing baseline polysomnography, each patient was given a full explanation of the need for and benefits of CPAP therapy by a sleep physician and a sleep nurse. This was reinforced by a 20-min video education program. Each patient was then sized for an appropriate CPAP mask from among a range of masks of more than 20 sizes provided by three different manufacturers. The patients were then acclimated to wearing the CPAP mask for at least 20 min during the daytime, before being booked for a full-night CPAP titration study in which CPAP was manually adjusted to abolish apneas/hypopneas and snoring, and to minimize arousals. During that night and on the following morning, any problems with CPAP were addressed by the CPAP nurse. The patients went home with their CPAP units, and were asked to report any side effects immediately by using a 24-h telephone line to the sleep nurses. The nurses contacted the patients by telephone on Days 2 and 21 to try to identify and resolve any problems with CPAP. The patients were then seen in the hospital by the CPAP nurse and by a sleep physician at 1, 3, and 6 mo after the full night titration study, and any problems with CPAP that the patients had encountered were treated appropriately.

Intensive support. The intensive support protocol consisted of all of the features named earlier for the standard support protocol, plus the following:

Initial CPAP education was given in the patient's home, with involvement of the patient's partner, with the belief that convincing partners of the need for CPAP and its continued use was important.

The patients had an additional 2 nights (3 nights in total) of CPAP titration in the sleep center in an effort to resolve early problems encountered with CPAP, since there was some evidence (12) that patients who spent 3 nights in the hospital at the inititation of CPAP did well.

The sleep nurses made home visits to the patient and the patient's partner at 7, 14, and 28 d and at 4 mo after CPAP initiation, in order to minimize problems with treatment. The early period was targeted because of evidence (6) that CPAP usage in the first month is a major determinant of CPAP use over the longer term. The 4-mo visit was for long-term reinforcement.

Under the "Discussion" section:

---

The present study also shows for the first time that a major determinant of CPAP use is whether the patient or the patient's partner initiated the referral for therapy. When the patient was the initiator, CPAP usage was significantly greater at all time points than when the partner initiated the referral process.

----

Furthermore, CPAP usage did not decline with time in the self-referred group, but did decline in the partner-referred group. Recognition of these features will allow more cost- effective targetting of resources in terms of CPAP machines and support staff.

It is important to recognize that the intensive support group in our study achieved greater CPAP use and better outcomes than did a group given a usual support system that was itself more intensive than that routinely used in many sleep centers. Practices vary widely between centers and between countries, and it is therefore impossible to generalize. However, it is probable that the CPAP usage and outcomes achieved by the intensive supported group in the present study were markedly better than those obtained with the standard support used in many centers.

----

In sum, the study reported here shows that CPAP use and outcomes can be improved by an active educational program.

___________________________________________________

Heh. No kidding.

Anyway, what I thought was interesting is that that particular UK clinic's "standard" support sounds like what would be considered "intensive" support over here. Quite different from a toss-a-machine/mask-at-you approach. Perhaps the UK clinic's deluxe "standard" support has lessened by now due to economic factors. On the downside, and not mentioned in the study (perhaps it wasn't as bad back in 1999) is the long waiting list that some people in nationalized health care countries like the UK have reported in getting a sleep study done in the first place.

I guess if you waited for a year or two just to get in for your sleep study, you might be exhausted enough to gladly spend three nights in the hospital, getting used to cpap.

[LDuyer]

....In sum, the study reported here shows that CPAP use and outcomes can be improved by an active educational program.
[/i]
___________________________________________________

Heh. No kidding.

Anyway, what I thought was interesting is that that particular UK clinic's "standard" support sounds like what would be considered "intensive" support over here. Quite different from a toss-a-machine/mask-at-you approach. Perhaps the UK clinic's deluxe "standard" support has lessened by now due to economic factors. On the downside, and not mentioned in the study (perhaps it wasn't as bad back in 1999) is the long waiting list that some people in nationalized health care countries like the UK have reported in getting a sleep study done in the first place.

I guess if you waited for a year or two just to get in for your sleep study, you might be exhausted enough to gladly spend three nights in the hospital, getting used to cpap.

Rested Gal,

Sorry I missed this the first time it was posted. But then, I wasn't yet out of my brain fog, and would not likely have appreciated it then.

Like you I was stunned by what they described as "Standard" support --- we should be so lucky. And like you implied -- did there have to be a study of this to prove what was only common sense anyway? Still, it was nice to read. And you're right, perhaps the dreaded delays could get us sick enough, exhausted enough, to encourage compliance.

Something in me doesn't like the word "compliance," although it's the only word that so far fits. I mean, if a person refused to take their blood pressure medication or diabetic insulin, are they referred to as not "compliant"? My uncle decided life was too rough, so he purposely stopped taking BP medication (and his BP was dangerous) as a form of suicide, and soon died. That he was not "compliant" is a term that just isn't strong enough.

I chuckled over the assessment that people who volunteered to be diagnosed vs those dragged in kicking and screaming did better than the dragged. But that's probably so in most medical situations, I'm guessing.

Thanks for giving me more to think about. ..... Now, where can I find some of that "Standard" support? ......


Linda

[LDuyer]

... My guess it that in a few years straight CPAP without monitoring progarms will go the way of monochrome computer screens, and eventually, many of us (or the next genration) will be sending their reports to the doctor's office on the net, - or at least be instructed when the results indicate that a non-regular appointment will be indicated.
O.

Your guess sounds wonderful. And you are probably right about the future.

In the meantime, we've got plenty of sufferers who get diagnosed often late in life and after years, maybe even decades, of experiencing symptoms. At the lecture I attended, I chatted with an older gentleman sitting next to me (also a board member of the ASAA) who told me his story of misdiagnosis or delayed diagnosis. After going through the whole story, he paused, stared into space, and said that he guessed he should be grateful he finally got properly diagnosed and started treatment, that he guessed it was better late than never. ...... I felt overcome with sadness. How many of us, myself included, feel extreme regret that they weren't diagnosed and treated far earlier. I feel that this regret is a real sore subject for many of us. ..... So I wish I had the power to snap my fingers and poof, the medical world would be different, and everyone experiencing symptoms early would be happily on their way to treatment and health earlier rather than later. ..... We can dream. ....

Linda

[ozij]

. ..... Now, where can I find some of that "Standard" support? ......

Ah well, at least we are lucky enough to have our 21st century version of non-standard (and highly creative and experienced) support in this forum.
It's a marvel...

....We can dream.

Amen.

O.

[LDuyer]

Ah well, at least we are lucky enough to have our 21st century version of non-standard (and highly creative and experienced) support in this forum.
It's a marvel...

Ozij,

Like you optimism.
Just market that enthusiasm, and we'd be in business!



Linda

[sharonious]

Three cheers for the support those on this website have provided, as well as the instruction and education, since I was first diagnosed (after many years of the same complaints.......) in September of 04. Looking back over the last half year, doctors and "personal respiratory therapists" have not known so very much about how to cope with issues. I attribute having been able to have machine and masks work for me to all your support and information. Thank you.......Sharon

[littlebaddow]

Heh. No kidding.

Anyway, what I thought was interesting is that that particular UK clinic's "standard" support sounds like what would be considered "intensive" support over here. Quite different from a toss-a-machine/mask-at-you approach. Perhaps the UK clinic's deluxe "standard" support has lessened by now due to economic factors. On the downside, and not mentioned in the study (perhaps it wasn't as bad back in 1999) is the long waiting list that some people in nationalized health care countries like the UK have reported in getting a sleep study done in the first place.

I guess if you waited for a year or two just to get in for your sleep study, you might be exhausted enough to gladly spend three nights in the hospital, getting used to cpap.

Wow, I wish I lived in Edinburgh Don't get too envious folks, that description of standard support bears no relation to my experience in England

Because of the long wait times to get treatment on the NHS, I went 'private' and paid £500 (about $900). For this I got two 15 minute appointments with the doc either side of 5 days use of an auto so that he could see the results, a free mask, plus 2 home visits by his physiotherapist to show me how to use the equipment.

Unfortunately, I've since discovered the free mask to be worthless as it's probably the most uncomfortable one ever made (I won't mention the manufacturers name in case Respironics are watching and think the Contour Deluxe is their top of the range model ) and the physiotherapist knew how to turn on the machine, but very little else. I didn't bother asking her to make the second visit.

When I told the doc I planned to buy my own machine, we was unwilling (or possibly unable) to make any recommendation and simply supplied me with telephone numbers for the UK distributors. When I rang them, they were less than helpful and in some cases seemed amazed that a patient was contacting them. And guess what, the prices you just wouldn't believe

Sorry, got the rant out of my system now

I'm just grateful I found this forum and cpap.com before it was too late

[LDuyer]

Unfortunately, I've since discovered the free mask to be worthless as it's probably the most uncomfortable one ever made (I won't mention the manufacturers name in case Respironics are watching and think the Contour Deluxe is their top of the range model) and the physiotherapist knew how to turn on the machine, but very little else. I didn't bother asking her to make the second visit.

Hahahaha!! Won't mention any names, eh?
Shall we email this to Respironics? Give them a piece of our minds, shall we?


Linda