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The most dreaded, misunderstood, misinterpreted, misused, destructive term in COPD

“End-Stage” – The Most Dreaded, Misunderstood, Misinterpreted, Misused, Destructive Term in COPD

The most dreaded, misunderstood, misinterpreted, misused, destructive term in COPD, “End-Stage”. The newly diagnosed, or those with first, second, and third stage COPD may never have heard or are not really that familiar with the term “end-stage”. But, when you reach the fourth stage one day, a medical professional will use the term “end-stage” to describe your COPD. The first time most people hear the term “end-stage” it sends them into a panic.

People think it means they’re at death’s door. Nothing could be further from the truth!

I have had stage 4 COPD for 17 years, (“end-stage”) and I’m still here with no “END” in sight. Most long-timers in the COPD community hate the term “end-stage” and refuse to use it in the groups, blogs, other writings, or conversations. They are well aware of what hearing the term (to describe your condition) for the first time does to a person. As I was looking over the survey on COPD posted by this site after one of the results with stage 4 and in parentheses the term “end-stage” which prompted me to write this.

As soon as they hear the word “end” come out of a medical professional’s mouth, (doctor, nurses, therapists), they hear nothing else after that point. Their emotions take over any rational thinking, and they can’t believe they were just told they are going to die. Phrases like, “it can’t be,” “it’s not true,” “how can I tell my family I’m going to die,” and “how much longer do I have to live,” come pouring out of the suddenly extremely depressed & overly stressed COPD sufferers. Life is tough enough with stage 4 COPD – the added stress, anxiety, and depression, caused by the term “end-stage” is not needed.

The medical professional trying to explain “end-stage” doesn’t mean a person is going to die, it’s only a clinical term used to denote that a person has reached stage 4 on the scale they use to measure the severity of COPD. What medical professional don’t realize is that no matter what they say after the term “end-stage” is used, the COPD sufferer is convinced they’re dying. By the time the COPD sufferer gets to stage 4, most know that means their condition is very severe so when “end-stage” is used it must mean they’re dying.

When a person with COPD hears the term “end-stage” when describing their COPD they automatically think that life is over.

For a lot of COPD sufferers once a professional users the term “end-stage” to describe their condition, they just signed the death certificate of the person. The depression, stress, anxiety, and other physical illnesses that phrase causes the COPD sufferer, it becomes a self-fulfilling prophecy. If you’re going to use “end-stage” it should be added to the scale as the fifth stage and used to indicate the true meaning of the words.

After stage 4 on the scale you could put stage 5, “end-stage.” Definition: you are maxed out on all COPD medicines, treatments, procedures, or operations available by the medical profession at this time. The only thing that will improve your COPD is a medical miracle or divine intervention.

As long as there is a procedure, medication, treatment or operation a person can receive, they are not “end-stage” and they should not be referred to as such. The way the term “end-stage” is used by the medical profession these days serves no purpose other than to needlessly upset COPD sufferers.

I’ve been a stage 4 COPD sufferer for 17 years; for the last eight years I have been “end-stage”

And when I say “end-stage” I mean I am “end-stage”. There is no medication, treatment, procedure, or operation that will improve my COPD in any way. Not any of my doctors, (general practitioner, pulmonologist, cardiologists), will perform any invasive procedure on me. I cannot even have a biopsy done on the nodule growing in my lung to determine if it’s cancerous. Because my doctors feel the procedure alone would kill me. I don’t normally talk about that aspect of my condition; the reason I’m doing it now is to let you know when you eventually hear “end-stage” you’ll know it doesn’t mean you’re dying.

Even though I am “end-stage” I still live a fairly normal life. I do think a lot slower than others, rest a lot, but I get the job done. I live alone, do my own shopping, housework, have lunch dates, and I go on road trips once or twice a year. I cannot fly but I can drive and last summer I drove the 850 miles from my house in Michigan, (where I lived at the time), to visit my aunt in New Jersey, brother in Long Island, and to take my grand-kids into New York City to the museum of Natural History, and a boat ride around Manhattan which stops at Liberty and Ellis Island. I haven’t done a trip yet this year due to the fact I moved, but, now that I’m settled in I’m planning another trip to New Jersey or Florida this fall. I live in North Carolina now, so depending on where I go will be another 800 mile plus trip. I do all of these things in spite of the fact I’m on oxygen 24/7, sleep with a non invasive ventilation machine, (I also use it during the day when needed), & have chronic heart failure.

It just takes a little planning and a lot of determination.

So when I was informed there wasn’t anything else the medical community could do for me, I began making changes in my environment and taking precautions that has allowed me to survive as long as I have, and if I can do it, so can you. After all “end stage” is a small term that could be erased from the vocabulary very easily. And if you ever do become truly “end-stage”, like me, you learn the art of balancing and teetering on the edge. Even with “end-stage” COPD there is life, and with “a lot of effort” you can make it a good one.

Breathe deep and easy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • klovelace
    2 months ago

    Sooo. I take care of an elderly lady who has been told that she has end stage COPD. She isn’t doing well at all. We were told there is nothing more that can be done. My question is, if end stage isn’t the end, how do I know how truly she is doing? She is having very bad symptoms.

  • Leon Lebowitz, BA, RRT moderator
    2 months ago

    Hi klovelace and thanks for your post. It can be challenging be the caregiver for someone with COPD. For you to have a better understanding of how she’s doing, you may want to speak with your patient’s physician. The doctor should be able to provide you with tips for what to look for based on the symptoms she’s exhibiting. Short of that, it will become a part of your experience to be able to determine and gauge how good or bad she’s doing. I hope this brief reply providing you with some insight for your concern. Please know you are always welcome here. Good luck! Leon (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    2 months ago

    Hi again, klovelace – I was thinking of your post as well as my reply to you. I thought you also might get a better idea of looking over this article which is specific for caregivers: https://copd.net/caregiver/caregivers-fear-unprepared/. I hope you find this to be helpful to read. Warmly, Leon (site moderator)

  • Stretch22
    3 months ago

    MARY, YOU ARE AMAZING, And an inspiration to never give up!

  • Leon Lebowitz, BA, RRT moderator
    3 months ago

    Hi Stretch and thanks for your support of Mary’s post. Sadly, we lost Mary to this condition some time ago. But her thoughts live on (for us) through her publications – always good to read!
    Warmly, Leon (site moderator)

  • deedeelee
    11 months ago

    Thank you very much for sharing ur story it has really made me think ur right this isn’t a death sentence yes my life has to be adjusted a little but I’m a fighter and I’m not ready to go yet I’m going to take one day at a time and just breathe.

  • Leon Lebowitz, BA, RRT moderator
    11 months ago

    Hi again, deedeelee and thanks so much for chiming in here on (the late) Mary’s article. Good to hear you have taken her story to heart and plan on fighting this condition. You are certainly in good company as our website and COPD Facebook page has many, many members who feel as you do!! If there is anything we can do to assist you, please let me or any other moderator/team member know. Wishing you well, Leon (site moderator)

  • BOBROB
    2 years ago

    I AM ON OXYGEN 24/7 AND I WOULD LIKE TO TRAVEL. HAVE A PORTABLE FOR THE PLANE, BUT IS IT A PROBLEM GETTING REFILLS FOR IT IN ANOTHER STATE? AND HOW DO YOU GO ABOUT GETTING A CONCENTRATER IN ANOTHER STATE?

  • Sharon-Tommy
    2 years ago

    Do you HURT a lot? Ribs both sides, front – back? That is my main concern. I on 24-7 oxygen, BiPap and Lots of Meds. Yes I am in 4 stage. Is this something most people have going on?

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Sharon-Tommy and thanks for your post. In fact others in our community have discussed different pains they’ve experienced with COPD. In view of your concern, I thought you might find it helpful to look over this article on COPD and pain: https://copd.net/clinical/tips-managing-pain/. Wishing you the best, Leon (site moderator)

  • davidpatrick344
    2 years ago

    drs have to wright the script for the oxygen and supplies other than that its up to you in what you do to stay alive – know your machines and what it takes to keep them going – you have to fight for what you need if sleeping sitting up helps do that – I have been know on occasion to hook the bipap up and sleep in a chair if perfume sets you off watch for the smell and go the other way if I stay in my house I can other than sleeping stay off the oxygen got used to running out of liquid oxygen for the portable and just use the concentrator – so its up to you drs and oxygen companies are out to make money so learn to fend for yourself – things like vinegar will clean your supplies and water chambers

  • Allyson.Ellis moderator
    2 years ago

    davidpatrick344, those are all very good points! It is important to know your treatment and equipment, and also to know what helps you personally to feel well. I’m glad you are doing things to help you feel (and sleep!) well. Best, Allyson (site moderator)

  • Paula
    2 years ago

    I was diagnosed at end stage. Up to that time, the only problem I had was climbing the “mountain” (tall hill really) down at the farm – as kids we ran up and down that hill all day. My doctor came in with my file open in his hand, read a little bit, looked up at me and said, “You have end-stage COPD,” and walked right back out of the door. Not one question was I allowed to ask, not one question answered. He told his nurse to have me come back in 2 weeks so I went back thinking we’d talk about it then. I brought it up and he looked at me like I was crazy. Needless to say, I immediately changed doctors; can’t say they were much better but at least they answered questions as best they could. I rocked along doing pretty well only using oxygen during sleep and a few times during the day. That doctor then moved out of the state and I ended up with yet a third doctor. I made the mistake of asking to be referred to a pulmonologist. He went into a rage! Yes, screaming at me and slamming cabinet doors while he was looking for something. He presumed I was saying he wasn’t good enough or smart enough to treat my COPD. So, again, I changed doctors. I’ve been seeing this new one since last fall and he seems to listen to me and responds to my needs for which I am very thankful. And, according to the PFT’s he had done, I’m really only Stage 3. All I can say to anyone is YOU know yourself and your body better than anyone else or any doctor ever can. If there is a problem, keep looking until you find someone who is willing and capable of treating the condition while treating you as a human at the same time.

  • davidpatrick344
    2 years ago

    I have asked for a referral to a lung dr several times but have to have the medicare advantage drs approval – he is really pretty good but staff sucks -they don’t know a bipap from a nebulizer and getting supplies is something else so keeping every thing going and clean is something else -last year I used the same full face bipap mask for a year same nose cussions for 3 months even though the insurance would ok 12 nose cussions and a new mask every 6 months but the girl in the office would cross them out and put 1 so the procces starts over and she get the oxygen supplies mixed up with the bipap and the bipap mixed up with nebulizer

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Paula and thanks for sharing your experiences with various doctors and your COPD. I’m sorry for the difficulties you encountered searching for the right doctor. It’s good to hear you’ve found one who meets your needs at this point with compassion, understanding, skills and a good ear. Your an excellent example of how being your own advocate and being persistent in your quest to connect with the right physician paid off to your benefit.
    Warmly,
    Leon (site moderator)

  • TracyCarnahan
    2 years ago

    Wow, what a powerful article. If only someone had said these things to me four years ago. I was told I am end stage and need a lung transplant at that time. I immediately logged on to find the hospitals that perform transplants and read all i could about it. All the sites said that end stage ment two years or less to live. Wow, did I fall down a dark pit of depression when my doctors confirmed this. I had been struggling so hard to stay on my feet but this was to much for me. I became bedridden and morose. It was just awful for a few months. It’s been four + years since and it took a full year to decide wasn’t going to die on their schedule but i must admit I’ve never really recovered completely. I gave up when i heard end stage, giving up almost killed me. Thank you so much for writing this article. You should reprint it about every six months for newcomers. This is vital information that can potentially save a life.

  • Sharon-Tommy
    2 years ago

    That is for sure. It is hard to dell with.

  • Casey Hribar moderator
    2 years ago

    Hi Tracy Carnahan,

    I’m so glad to hear you connected with this article!! After reading your comment, I wanted to let you know that we’re here for you. Always. I’m so sorry to read about your struggles with depression and feeling so morose, but please know you’re not alone in this journey! It makes me hopeful to read about your new attitude in regard to being end-stage, and I’m so happy to hear you want everything to be on your own terms! Your spirit is so wonderful, and your idea of re-posting this for newcomers is excellent! I will definitely talk to the team about this!

    Best, Casey (COPD.net Team)

  • PHILBE
    3 years ago

    Hi Mary. I enjoy reading your stories. I’m trying to learn more about breathing treatments and the medications associated with them. Do you use a nebulizer? I’m a little confused about why some people who are on oxygen 24/7 don’t use nebulizers. If I don’t get a breathing treatment every four hours, I feel like I am going to die. I think end stage should refer to anyone who needs medication to stay alive. I am definitely in that group.

  • Mary Ultes author
    3 years ago

    COPD acts differently in me of us. Some may be on oxygen but they do well on inhalers. A lot has to do with the type of meds you take. Their are those on a nebulizer that are not on oxygen. The way you react also depends on the type of COPD you have. If you have chronic bronchitis& emphysema you will have a very difference experience then if you just have one, I’m a lower stage 4, been on & off hospice, yet I have not been to the ER or in the hospital for my COPD in over 4 yrs & I have had only one infection in that time. As far as being end stage goes my feeling are; a lot of people with diabetes have to take medicine everyday to stay alive, yet no one terms them as being end stage. According to my Drs I’ve been end stage for 13 & should be dead. But I chose to put my faith in God, take my health in my own hands & learn all I could about COPD & put what I learn into practice & it has not only kept me alive, but I live a good life for someone with a FEV1 of 16% & CHF. never lose hope & don’t let depression get you down. Depression & stress will put you on a fast track to the here after. Ask you Dr about other med that might work better for you, & if you not exercising start. you should be doing breathing exercises every day. It will help a lot & if you smoke quit, it is the best thing you can do to. Breathe deep & easy, Mary

  • mogal
    3 years ago

    Thank you for this blog. I was diagnosed with “end stage” about 6 months ago. I had already lived more than 5 years past what another doctor told me back in 2001..so figured the end was near as my symptoms had gotten worse and they had upped my oxygen levels to 3 liters 24/7. This blog made me realize that I just need to take it one day at a time and do the very best I can to live life to the fullest. I am sure it has given many more an education and hope!

  • Mary Ultes author
    3 years ago

    I was given less then a year to live in 2002, less then 6 months to live & put on Hospice in 2007. I was on Hospice for 4 yrs. I’ve been off Hospice now for almost 5yrs. It’s been 17yrs since I was first told I would die & I’m still hanging in there. I too am on 3L oxygen & sleep with/use when I need to during the day a non invasive ventilating machine. I take everything day by day & like you live life to the fullest. Never give up hope. I’ve learned that when it comes to COPD each case is different & the doctors should not be putting more stress & worry on COPDers by putting a limit on our life when only God can predict that. Keep up being “COPD Strong”, God Bless. Breathe deep & easy, Mary

  • masseja
    3 years ago

    what liter flow are you on, and what do you do for the 800 mile trip?

  • Mary Ultes author
    3 years ago

    Hi Masseja, I’m on 2 1/2 liters. When I took 8oo trips I was on liquid o2 & took a travel tank (that held 4 days of o2) with me to use when driving. If I need to stop & rest I stay in my van, I had a cooler for water, & snacks.I no longer take trip I can’t make in one day. The last 2 trips I took were 485 miles. I used E tanks when driving & whenever I gone on a trip, I arranged with my o2 supplier to have oxygen waiting for me where I would be staying for the length of time I would be staying there. I got my tanks refilled for the trip back.

    So you know I haven’t been able to fly for years. When I drive the only thing I get out of my van for is to use a rest room & I must be able to pull up to the door & walk in. If not I wear depends, go to a secluded spot in rest area, relived myself & change in my van. If I need to get gas I pay at the pump & wear a mask or have someone pump the gas for me. I get my food from take out window & eat in my van.
    Breathe deep & easy, Mary

  • River Daniel
    3 years ago

    Mary, my emotions are running wild after reading your piece. Confusion, joy, hope. But one line really struck me. You said your thinking is slower. So is mine. For the first time, I’m aware of cognitive issues. These are creating more panic than the SOB. Please write more about this. And thank you.

  • Mary Ultes author
    3 years ago

    Don’t let it put you in a panic or stress you. My thinking is slower, but I still think well enough to write. I will be writing more soon. Glad I can be of help to you. breathe deep & easy, Mary

  • Melanie
    4 years ago

    Thank you for sharing, you took a lot of anxiety out of my life with your story! God Bless you and I hope you have a long life!

  • Mary Ultes author
    4 years ago

    Melanie, Glad I could be of Help.According to my doctors I have been “end stage” for the last 14yrs & I don’t plan on dying any time soon.It is just a term not a death sentence. God Bless you too, breathe deep & easy, Mary

  • John Bottrell, RRT moderator
    4 years ago

    As a respiratory therapist, I agree 100%. I work with COPD patients every day, and have seen many get the diagnosis “end stage.” Some are even told they won’t live much longer, and then ten years later I’m still talking with them. I think this is a testament to all the new COPD wisdom and all the great treatment options available today.

  • Mary Ultes author
    4 years ago

    Hi John, I was one of those that was told they would never leave the hospital & when I did, given less then 6 months to live. I was on Hospice for almost 4 yrs.
    Been off now for 3yrs, & don’t plan on dying anytime soon. I still talk to my Hospice nurse in NM, she became a good friend. The first time I was told I had a few weeks to live was 13 yrs ago. That when I learned when it come to COPD the more you know about your individual COPD, & the many new treatment/meds available the better & longer you’ll live. Breathe deep & easy

  • Dooleybud
    4 years ago

    My husband has end stage COPD and was discharged from the hospital last week for the 18th time since April 2015. This time, the doctors said that he could either die in the hospital on a respirator or go home to his family on Hospice. They also said that they have done everything they could for him. Your article was very encouraging. Thank you for that.

  • Mary Ultes author
    4 years ago

    Hi Dooleybud, No thanks necessary, glad to be of help. The drs. told me the same thing, gave me 6 mons to live. I left the hospital & went on Hospice. that was 8yrs ago. I’m still here, no longer on Hospice & doing ok. I learn to take control of my COPD, not let it or any doctor tell me when my time is up. I made it a point to learn all I could about my COPD. I said my COPD, because COPD effect each of us in a different way. You need to find out what helps or hurt your husband ‘s breathing & make adjustments to his life. The one thing that he can not do is let himself fall into depression or get stress out. Stay positive, never give up,& keep doing as much as he can. Read up on how to make your home COPD friendly, it will help a lot. God Bless, I will put your husband in my prayers. breathe deep & easy, Mary

  • Lynn545
    4 years ago

    WOW! You just gave me hope! Thank You 🙂

  • Jenn Patel
    4 years ago

    Hi Lynn545 –

    Thank you SO much for your comment – we are so glad this article was helpful for you!

    Please do feel free to come here any time you’d like to check in about how you’re doing, or get information, or whenever you want some support! We’re so glad you found our community and joined us.

    Warmly,

    Jenn (Community Manager, COPD.net)

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