Personal Opinions on "Stages" of Emphysema
Why use the term "end-stage" emphysema?
Date: Thu, 24 Jun 1999 21:09:34 -0700
This is a big issue. I first heard it applied to me when I was referred to the "End Stage Clinic" at UCDavis--while shocking it shook me out of the denial I had had for years. Its not a phrase we should dwell on, but it may keep some of thinking, exercising and working on wellness...wonderful people thanks for being here--barb in Oregon
Absolute agreement. I've heard that phrase for 11 years. Last time was June 8. My Dr. said, "you being in end stage" Wish we could get it changed, but how?
Words are words. They can't hurt you. To a large degree "end-stage" plays a > big part when you are trying to get various forms of disability benefits. Please don't throw the baby out with the bath water. Ellen R.N. in AZ.
This is a very good point right here, I am sure you will find that this comment is often overlooked when explaining it to the patient. Your short comment would be very worthwhile if added to the explanation.
Such as "you have what WE call end-stage emphysema which simply means that at the current time, there is no specific medicine that can improve your situation any further than we have. While you are already aware of your situation, there are several ways to deal with your "changed lifestyle" such as rehabilitation to begin with. When "changing lifestyle" you must realize that you will have to literally do that by accepting that there are many things you will have to curtail or at be develop other ways of doing them in order to conserve your energy and breath."
This is what we are asking for... not a clinical expression, but a little more "patient friendly" explanation. Another of course, would be to directly suggest joining a support group to help learn how to effectively deal with the disease.
I've observed the banter and questions herein, not to mention contended with all manner of responses to this question with countless people over many years now. May I humbly offer for your consideration explanation and perspective from my experience of near thirty years as a Respiratory Therapist.
There is NO 'official', or otherwise endorsed system to classify Emphysema (Not from the American Medical Association, or the American College of Chest Physicians, or the American Thoracic Society - the only bodies of authority able to create such things in the USA). The question has been raised many times over the many years I have practiced Respiratory Care, but presents such a dilemma because of the widely variable nature and severity of associated symptoms, the lack of definitive symptoms which would allow distinction of 'stages', and the fact that regardless of how you group people by symptom type, number and severity, you will find extremely wide variation in how those folks are individually affected in both function and
quality of life.
As has been suggested by an earlier respondent, there are several reasons of necessity in branding one's level of disease. They range from needed documentation to establish disability, medical necessity of intervention and those types of 'practical' considerations. There are also personal reasons from the doctor trying to scare you - - or not - - by telling you how bad
you are. Often, we are asked by you, the patient: "Doctor, (or insert other health professional of your choice), how bad am I?" This forces the use of a quantitative classification - - good, or bad as it may be. More often than they would like to admit, it is the only defense they can muster up to mitigate the fact that they indeed cannot do any thing more to effect improvement in your condition, as some of you have already stated. They lack skills and knowledge to do more, or barring lack of those, have simply run out of options.
The best you can do is what has been done for years, and that is to quantify individuals relative to some global concept of mild, moderate or severe. Most clinicians who feel compelled to put a label on one's point in the disease state will usually (and wisely) retreat to this method of classification. Yet even approaching it this way, you can't 'nail it down' because there are always many who you call mild who tolerate the symptoms poorly and have heightened complaints. On the converse, you see lots of folks with near-death numbers on their pulmonary function tests who keep on 'chugging' along, breathing so loudly you can hear them coming from great distances away (Ahhhh, music to my ears!). Their appearance is less than confidence-building, what with their dusky complexion and their great effort to move air, walk and get from point 'A' to point 'B'. But you ask them how they're doing, and they'll tell you; "Fine, just fine!" Sometimes, they have out-lived some of those doctors who labeled them; "End-Stage".
In the end, though, I think we do ourselves (as health care providers) and you a disservice by carelessly bandying labels such as "end-stage". Some time ago, I was asked to expound upon the "exact meaning of End-Stage Emphysema" for another group on the net. Three pages later, my summarization was no closer to a definitive answer than I will finish this
effort with. The points I made were: If I ask one hundred Pulmonary Specialist Physicians what End-Stage Emphysema meant to them, I would get roughly one hundred descriptions. Some would attempt to be very scientific and intellectual, giving you numbers and pie charts (recycled from past Ross Perot Presidential campaigns), while others would exude authority, telling
you that it is a mystery, definable (and understandable) only by physicians, "But, trust me. You've got End Stage Emphysema, if I tell you , you have it. That's all you need to know."
The problem is that many of us have a concept of what 'End-Stage' means, especially if we have spent time around someone dying from aids, or cancer, or kidney, or liver failure. There is a context of imminence associated with those conditions that is not present in the frequently applied labeling of emphysema. As many of you know and have already said, you can live for
many years past the point when your doctor labels you 'end-stage'.
My best recommendation is to take such labeling with a grain of salt - - as best as you can. If you think it is a 'cop-out', for God's sake, challenge your doctor to be straight with you. You would be surprised how much deception and discomfort can be shed if your doctor is able to be straight with you and admit he doesn't know any more to do. It opens the door to
opportunity! "What?!" You say. Yes, opportunity for you to (1) dump him/her and get a better one, if he/she has thrown in the towel prematurely, or doesn't want to bother to aggressively pursue effective solutions to your needs. (2) Better yet, it allows for you and your doctor to become 'partners' in pursuit of a better life for you within those things that you find that you cannot change. Beyond that, unless you need to allow yourself to labeled that way or, - - any way, for that matter - - such as to 'work the system' to qualify for treatment or similar entitlement, simply tell your doctor that you don't appreciate the labeling and refuse to allow them to assault your dignity.
The bottom line is that when you truly reach 'end stage', you won't need anyone to tell you! So try as best as you can not to let yourself be labeled. If you do find yourself labeled that way and you know you're not 'there' yet, work hard to make them eat their words - - - by refusing to roll over and die and live to make every day special. After all, that is all anyone can do ill or healthy anyway, right? God bless you all in your struggle.
Mark Mangus, RPFT, RRT, RCP
Respiratory Therapist &
Pulmonary Rehabilitation Program Coordinator
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