COPD PROGNOSIS
MANY COPD PATIENTS DO NOT REALLY WANT TO FACE THE PROSPECT OF DEATH EITHER FROM RESPIRATORY FAILURE, HEART DISEASE, LUNG CANCER OR ANY OTHER RELATED OR UNRELATED CHRONIC DISEASES. HOWEVER, DEATH COMES TO EVERYBODY EVENTUALLY AND THERE ARE STEPS YOU CAN TAKE TO POSTPONE THE INEVITABLE.
OFTEN WITH COPD, IT IS IMPOSSIBLE TO PREDICT EXACTLY WHEN PATIENTS WILL DIE - some have been given six months to live and survived 5 years or more. Patients with dreadful lung functioning manage to struggle on while others fade away quickly. There are so many factors to take into consideration so don't be surprised if you ask your GP or Consultant "how long have I got?" they will reply with a shrug of the shoulders. The fact is that they don't know - everybody reacts differently to COPD and there are so many methods of treatment for patients with so called "end stage emphysema".
The diagram above is often used to illustrate the relationship between FEV1, when diagnosed, and consequent survival.
In my case I was diagnosed with Severe Emphysema with an FEV1 of 27%. Five year survival rates for people at diagnosis with an FEV1 between 20-29% are, as you can see, 30% for men and 24% for women. Now when I saw this I dived into a pit of despair until I realised that the diagram has severe limitations.
What are the limitations?
- An FEV1 of 20 – 29 % is a fairly broad band and if I was diagnosed with an FEV1 of 20% I would not necessarily expect to live as long as someone diagnosed at 29%.
- If I continued to smoke after diagnosis then, as I have already stated, my lung functioning would decline twice as fast, as it would have if I had stopped.
- GIVE UP SMOKING NOW GO TO http://www.gosmokefree.co.uk
- If I had been diagnosed with COPD in this FEV1 band in my 80s I should not expect to live forever and also the disease might sap my enthusiasm for living.
- If I was diagnosed with COPD and then developed lung cancer my outlook would be pretty poor.
- Equally I might also suffer from other chronic illnesses, for example heart disease or diabetes, liver or kidney failure that might reduce my life expectancy considerably.
- If I develop a negative attitude to my illness, becoming seriously depressed, refusing to eat properly or living in damp /poor housing conditions with a pension that all too often is too low for me to provide adequate heating for myself in winter, then again this would reduce my life expectancy.
I had a good friend who died within five years of diagnosis with COPD. She didn’t exercise, was in her 70s, had severe bronchitis, and refused to take steroids and some other medications because they “affected her throat”. She died following a long spell in hospital with an exacerbation. I was gutted.
In summary then what does affect our survival?
FEV1 status – age – degree of breathlessness – PaO2 (oxygen levels) – body mass index – cor pulmonale (right ventricular heart disease) – health status (including other chronic diseases)- determination to exercise - reasonable living conditions- to name but a few.
OK so most people with moderate to severe COPD seem to have a reduced life expectancy, but what do COPD patients actually die of?
Few studies have been made on this subject. However it seems that the following appear to be the main causes of death, in order of importance.
- Respiratory failure (lungs finally giving up!)
- Heart failure ( sometimes known as cor pulmonale but may be stroke etc)
- Pulmonary (lung) infections or embolism.
- Cardiac arrhythmia (abnormal heart beats that might lead to heart stopping).
- Lung cancer
Ok. But I have heard of “end stage COPD” – when does that occur?
Good question. With severe COPD or emphysema, the first thing I had to accept was that death MIGHT occur at any time following a severe exacerbation, hospital admission and being placed on a ventilator. It MIGHT but we have to carry on regardless and do our best to keep healthy and strong. I am a great believer in the power of positive thinking. When I’m ill I concentrate every cell in my brain (not many in my case – too much boozing in the past!) on getting better. As a child I used to be gassed at the dentist for a tooth extraction and the dentist used to say that I was the last to go under and the first to leap out of my chair. Avoiding exacerbations through giving up smoking, exercise, eating properly, maintaining an ideal BM1, avoiding people with colds/infections, keeping warm in winter and taking our medications correctly is the best way of postponing the inevitable, and avoiding unexpected death.
As for “end-stage emphysema” of course I’m going to say that it is difficult to define – even doctors cannot predict death within two weeks of someone dying from COPD. However it is clear from the above diagram, that there will come a point in the future when I have to admit, or the Consultant will explain, that I have reached “the end stage” and ought to prepare for my death and also state how I wish to be treated and how I want or where to die (often known as a LIVING WILL).
In general terms patients who are in this “end stage” will probably have an FEV1 around or below 0.5 or in my case 15-16%, be breathless at rest, been hospitalised a few times and probably have been on a machine more than once to help their breathing. And in this case respiratory or heart failure may follow. On the other hand patients have recovered from being artificially ventilated (that machine) and go on to live a year or two beyond all expectations. I should add here that I am talking about patients with just COPD and no other serious chronic conditions such as lung cancer or premature heart failure. Because of the long and progressive health deterioration in COPD patients, it is important to realise that we might die of something else entirely! My GP and Consultant both say repeatedly “you might be hit by a bus” and it now goes without saying that I am scared to death about crossing a road.
I SHOULD ALSO ADD THAT CONSULTANTS TEND TO IGNORE FEV1 RESULTS ONCE SAY THEY GET DOWN TO 0.71 ( OR SAY 15-25% depending on age and sex)- other factors then become more important.
You can see therefore that it is difficult to predict my death. From the diagram I shall be very fortunate to be around in 2010 but I want to see the Olympic Games in London! (On TV!). In any case there may be a research breakthrough in lung stem cell replacement therapy by then or some revolutionary drug or surgical proceedure but I don’t count on it.
When the end comes will I be in pain or on a machine or what? What can I expect?
Goodness knows I haven’t been there. But studies have shown that the following symptoms are to be expected
1. Dyspnoea (breathlessness, and in this case at rest) – often patients fear this as much as pain, but in palliative care (end-stage) it can be managed carefully by diamorphine. This can in some case depress the ability to breathe but the alleviation of discomfort at this stage is preferable for the patient, measured against risk. Oxygen will help.
2. Cough and phlegm - mucolytics etc
3. Depression and anxiety - this can be controlled by buspirone or benzodiaxepines, lorexepam and diazepam.
4. Insomnia - hypnotics (sleeping pills might help or the above)
5. Extreme fatigue
6. Delirium (due to high CO2 – carbon dioxide levels)
7. Pain - as above in 1.
8. Anorexia (due to difficulty in eating leading to weight loss) - drip feeding etc
Now before you start entering a deep depression, remember that all of these symptoms can be managed provided that you inform your GP/consultant how you want to be treated in advance. Otherwise there is just a chance that your symptoms might be overlooked. I plan to have cards with what I feel on them to be raised in a weak hand!! There is no need these days to fear the dying process. With proper palliative care, all the above symptoms can be controlled. The aim for the patient and the medical staff is to prepare you for a "good death" - one free from pain and at one with those you love. To that end you should receive (if you ask for it) counselling, support from your religious community, friends and family, music therapy - whatever you require outside medical intervention. And if you are fortunate you may be offered a place in a Hospice - best option.
Should I make some arrangements for my death in advance?
I believe so. I’ve done that just to get it out of the way and forget about it. I’ve obviously made a will through my solicitor, stated my requirements for a “green funeral” and who should organise it and where I should be buried in a woodland site. It’s done so now I can get on with living.
You mentioned a machine for helping me breathe, what is that exactly and will it help me?
Well I have avoided answering my own questions for a few months now. I know I may eventually need it but I do not look forward to it.
Firstly respiratory failure may occur with advanced COPD. It means basically that the lungs give up trying to mainatain reasonable blood oxygen levels. Some professionals use the terms "pink puffers" and "blue bloaters" to describe COPD likely to develop respiratory failure. Personally I hate the terms and anyway some people have a mixture of both but for now it might simplify things.
"Pink puffers", and I think I'm one, are very breathless (in end-stage at rest or during an exacerbation) and have a pink colouring. They are often underweight, have no significant coughing and use pursed-lip breathing.Although they normally have a poor breathing ability & low oxygen levels (hypoxia), their PaCO2 levels (carbon dioxide in the blood) remains relatively normal. Therefore respiratory failure in this group occurs in the advanced stage along maybe with heart failure. Of course an exacerbation may lead to temporary respiratory failure.
"Blue bloaters" have little breathlessness and are often overweight. In exacerbations their CO2 levels rise and right sided heart failure may occur. LOOK FOR SIGNS of CYANOSIS - blue or purple discolouration of the skin, nails, lips etc - signs of insufficient oxygen.
But as I have said these terms are really going out of fashion! Now before you say "well if respiratory failure occurs that's it" - it is not. That is where the machines come in. In recent times the machine of preference to help you breathe is known as the NON-INVASIVE VENTILATION (NIV) device.
AT THIS POINT PLEASE OPEN THE NEW PAGE NON-INVASIVE VENTILATION AND INTUBATION
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