The PRAXIS Nexus The PRAXIS Nexus

"You Have COPD."

Posted on January 20, 2017   |   
20 Comments   |   
Like 15 Likes

 COPD diagnosis

The doctor looked at his patient, and said, “Joe, you have COPD.”

Normally a friendly guy, a talker, Joe was speechless. He was stunned, then began to feel anxious, making him short of breath – even more so than usual. His doctor went on, explaining what COPD is and what could – and couldn’t – be done about it. Maybe Joe heard that. Maybe he didn’t.

“You’re going to have this for the rest of your life. It’s not going to go away.”

“I’m always going to be short of breath like this? No way! I can’t do anything around the house anymore without gasping.”

“Joe, right now you’re recovering from a bad bout of pneumonia. We’ll do some tests and see how things go in the next few weeks.”

“Now hold on here, doc. The pneumonia came out of the blue. I was fine before that.”

“Joe, chances are the COPD has been coming on for a long time. It can be there for years before we notice it.”

A little calmer now, Joe said, “OK, doc. So I have this… this… COPD… or whatever you want to call it. There must be something that will help – a pill or something.”

“There are medicines you can take, but COPD is, for all intents and purposes, irreversible.” The doctor repeated, “You’ll have this for the rest of your life.”

“The rest of my life? Now, wait a minute. That sounds so… final. This can’t be. I’ve worked hard all my life. I just retired, and I’ve got things to do. Plans to travel. Grandchildren to spoil.”

“I know, Joe. I’m sorry. The nurse will be back in a few minutes to tell you about your new medicines. I’ll see you in a few weeks.”


There’s no doubt that you, a health care professional, are all too familiar with this scenario. How should we talk to a patient who has just been told he has COPD? Here are some thoughts on starting that conversation.

First, let’s note that Joe’s doctor was actually pretty gentle and forthcoming. Patients are sometimes told how they did this to themselves by smoking, they are told to go home and make final arrangements and that’s about it. They may be given little or no information on COPD. Sometimes they’re not given any positive information at all.

It’s common that patients do not take in everything the doctor said. A good way to start is to say, “Let’s go over what the doctor said. Why don’t you begin by telling me what you heard.”

Don’t Give In or Give Up

Your patient may have just been told how long he may expect to live, given his diagnosis of COPD. Assure him that many people live a long time with COPD. If he has a sense of humor, you might say something like, “Take your shoes and socks off and look at the bottom of your feet. Do you see an expiration date? You don’t? Well, that means that you nobody knows for sure how long you’re going to live.”

“I know this is very scary. But you’re not alone. There are an estimated 24 million people or more in the US with COPD. And there is a lot that can be done to help you breathe easier.”

Pulmonary Rehab

Tell your patient about pulmonary rehabilitation, a program of exercise and education especially designed for people with COPD. Hopefully your hospital or clinic has a pulmonary rehab program on site, but if you don’t know where the nearest pulmonary rehab program is located, contact the AACVPR (American Association of Cardiovascular and Pulmonary Rehabilitation) by visiting the AACVPR website.

Before mentioning exercise, explain that the health care professionals at pulmonary rehab are experts in working with people who are short of breath. In pulmonary rehab he’ll gain strength, stamina, and flexibility and learn a lot about his lungs and how to stay as healthy as possible. He’ll learn about breathing techniques, relaxation, medications, and more. He’ll also find friends who have many of the same concerns.

 COPD diagnosis

Breathing Support Group

If your organization has a breathing support group, give your patient information about that group and their meetings. Encourage him to go, to learn about COPD and how he can breathe easier and get on with his life. Remind him that he will meet people there who are dealing with the same issues.

Online Community

If your patient has online access, tell him about the COPD360Social online community. There he will see a wealth of conversations along with good questions form people like him and solid answers, often from lung health professionals. He can spend time in the community, remain anonymous and learn (lurk and learn), or he can participate as an active member. Assure him that no matter what, he will be in good company with wise and courageous people.

Coping and a Positive Attitude

Learning to cope with a diagnosis of any chronic, incurable, progressive disease is a process that takes time. Help him understand that it may be a while before he’s able to take all of this in. He may experience a range of emotions. If he smoked cigarettes, he shouldn’t judge himself too harshly. What’s past is past. All he can do now is go forward and do the best he can. Reassure him that facing his challenges, learning about COPD and having a positive attitude can help him have better control over his breathing, and his life.

Please share your thoughts in the comments on supporting those newly diagnosed with COPD.

20 Comments



You need to login to comment.
  • It is a scary thing being told you have COPD. The diagnosis can be confusing and embarrassing to some people..I know it was for me. Do Doctors have access to an online community where they can share their stories and maybe get some advice on how to deliver such news to their patients? Doctors are busy, but please treat newly diagnosed patients with some compassion and empathy. A little extra time spent with a person just hearing the news would be appreciated. Maybe some information on COPD that the patient can take home and read over would be helpful. I remember when I was told it was done in such a cold manner that I cried on the way home and went into denial until 2 years later I was in the hospital for a week. To this day, I resent the way the Dr told me. I was not given any encouragement , just gloom and doom. I have a very soft spot in my heart for newly diagnosed patients.
    Reply
    • Hello, today is my first day of acknowledging and wanting to know about COPD. I was also diagnosed 2 years ago when I was in the hospital with pneumonia. As of today I still don't know exactly what I have, what stage, and what I have to look forward to. I know I have to move forward. My breathing has become worse and all I do is worry about leaving this earth. the Dr. did take tests and said I probably have copd but my MRI test shows scar tissue on the lung from the pneumonia. I am going to make another appointment to confirm exactly what I have. I don't know where to start to be able to manage this. It is hard to do any form of exercise and I need to as I am now obese. Any suggestions?
      Reply
  • Thanks for sharing your story, Bellabits. I'm sorry that it was such doom and gloom -- and I'm hoping some of the HCPs reading this can learn from your experience. The PRAXIS social group (it's a subgroup of COPD360Social), is an online community for providers can share their experiences and their successes and -- importantly -- their lessons learned when their approaches were not ideal. This blog is a part of PRAXIS, as well -- we love that both patients and providers comment on these posts. We are all learning from each other! Thanks for your honesty and contributions to this beautiful community.

    Healthcare providers -- you can access the PRAXIS social community here: https://www.copdfoundation.org/Praxis/Community/Discussions.aspx

    Reply
  • My primary care physician gave me my diagnosis. I walked out of there that day knowing as much as I did when I walked in, nothing. I didn't get gloom and doom, nor did I get encouragement, nor did I get any useful information, I got inhalers and that was about it. Every PCP should have something they can hand out to new diagnosed COPD patients that directs them to COPD Foundation.
    Reply
    • Hi Clipper
      I am glad you agree with me about some type of handout that Dr's should give. Don't let patients walk out empty handed with a heavy heart. To this day not many people know that I have COPD. So I am very happy to have found this site.
      Reply
    • Clipper, thank you for sharing your experience with this. It felt as though you were telling my story. My experience was exactly like yours. I got Nothing but the diagnosis. No encouragement, no doom n gloom, no literature, no medicine, no empathy, no concern, Nothing. I was numb, in shock, devastated, heartbroken, scared & lost. And the way I was treated made me feel like I got what I deserved from smoking which I did but still I needed a second to process what I was hearing & I was worthless. I believe the way I was treated was just as hurtful as the diagnosis. I know it was.
      I thought my experience was just bad luck but after reading the experiences of so many others, I see this is a real problem. We are real people. This is a serious, chronic disease. What is wrong with dr's?
      Reply
    • Bellabits, yes I too resent the way the dr. handled the news with me. Very cold. A forever memory that made a really bad day as worse as possible.
      Reply
    • Hi to all that have commented here. I will never forget that day when after the breathing test the tech asked me to wait, I had then a chest x-ray, and then sent to the head of pulmonary. Nice, no reassurance, nothing being said that we just want to see this or that. My memory is looking at my lungs from the x-ray and this Dr. pointing to a hazy mass saying that is emphysema. And that is what I had, like my grandmother whom I watched dye slowly. I don't think he even turned the lights on, I just turned around and walked or ran down the hall and out the door. Crying, I drove back to work and told my friends there that I worked with. They suggested that I should go home. but I could not face it all by myself and could not be left alone. That was over 16 years ago. I have experienced good and bad, but it is so lonely here in the world of "oh you smoked so you got what you came for". I don't need shame, or blame, and will use myself as an example against smoking. But not for how the Dr. "top of his department" treated me. They could have at least held my hand when they handed down the sentence. Offered a smile and a teaspoon of hope. Today my Dr.'s nurse just called me back and I explained about needing a stronger antibiotic to get over this attack, she was sweet. One more and then i will be quiet. While in the hospital with an acute exacerbation my young little nurse referred to me as a "lunger" I do hope she remembers every word spoken to her for her own good on that day of loose tongue.
      Reply
  • I was diagnosed (in a very offhand way) by an ER doctor taking care of me when I came in with pneumonia. He simply told me I had COPD (but nothing more), prescribed Symbicort, and told me I should follow up with my Primary Care Physician. When I asked my PCP about it the following week, he told me not to worry about it. For the next three years, during which time he treated me for another bout of pneumonia and for a major case of viral bronchitis, he repeatedly told me to ignore it each time I asked. It wasn't until I changed PCPs that anyone paid attention and even then it was mishandled: my new PCP sent me in to get chest x-rays and the following day, one of the office nurses called with the results, bluntly informing me that "You have severe COPD." When I said, "What do I do now?" she replied, "I don't know. Do you want to make an appointment with your PCP?" The PCP was sympathetic and supportive and referred me to a pulmonologist, who essentially told me that it was hopeless and that I'd be dead in four years. His idea of being "supportive" was to tell me "Well, at least you don't have lung cancer."

    Physicians and medical staff from top to bottom need some major re-education on how to communicate with and treat COPD patients.
    Reply
    • That is horrible Ben A. Hopefully your well past 4 years. Thank goodness some things have seriously changed for the better. As in reference to medications. Unfortunately, people don't often change.
      Reply
  • I was diagnosed when I ended up in an ER after calling 911 because I suddenly couldn't breathe. I learned the diagnosis, not from a doctor, but from an occupational therapist who apparently was required to evaluate me. Her comment was "well at least they ruled out a pulmonary embolus". I received very little education and was discharged from an ICU 3 days later on oxygen 24/7 to pretty much fend for myself. It was horrible. This web site and a fabulous home health nurse were my biggest help in understanding what I felt was a certain death sentence.
    Reply
    • Thank you, thank you, thank you all for sharing your stories. I'm so sorry you all went through what you did, but so happy you've found help and support here. By sharing your stories, you have helped many, many people know they're not alone; and you've shown them by example that there is hope.

      Dgirl, I suggest you talk with your doc about pulmonary rehab. There you can learn how to exercise effectively even though you're short of breath. Even if you don't have COPD, if you are diagnosed with a different chronic lung disease you may still qualify for pulmonary rehab.


      Reply
  • Hi everyone, I am a respiratory therapist that has been doing the pulmonary function tests for 15ish years, now pulmonary rehab. I'm sorry that you were not given the respect that you deserve as a patient, this is exactly why I always tried to explain during the pulmonary test what the numbers meant so that I could educate them before they left arming them with GOOD questions for their physician. Hope is gained through knowledge and places to find the answers like this site!


    Reply
    • Thank you good info from a health care provider is invaluable
      Reply
  • I posted this to a healthcare provider professional site, and I was very pleased with the responses of those who read the article. Often times, as providers, we lose sight of the *person* receiving the diagnosis. We see/hear these discussions every day and, not that we want to be hardened or callous, but we don't do a good job of recognizing the need for suppot and compassion.
    This article really helped many of my colleagues to regain the focus on the patient as a person instead of just a recipient of therapy/treatment.
    Thanks for posting this!!
    Reply
  • Funny how people interpret COPD differently, when you tell them, "I have COPD". Oh that's not bad at least you can LIVE with it. Thumbs up if you've heard this. I think it's somewhat ignorant!
    Reply
    • Bill66, Actually, it is technically correct that 15 million of us who are diagnosed as well as the 15 million that are undiagnosed DO LIVE with COPD. It's hard for folks who don't have it to know what it's really like to LIVE with COPD, but then that can vary from day to day and person to person.

      Invisible conditions are always tougher for folks to understand, especially when you LOOK great and function pretty well. There are a lot of invisible chronic conditions, many of which are not fatal. Some of them get more attention and sympathy than others.
      Reply
  • While "you have COPD" may sound scary it is useless information without more facts. A pulmonary function test can determine if your COPD is stage 1, 2, 3, or 4. A discussion of your lifestyle can help to determine why you are where you are and what you can do about it going forward. Environment should be factored into that equation also.

    When all is said and done it is what it is and the only question is what are you going to do about it.

    As you will see by reading the posts on this site there are many who have chosen to "do something about it."

    Reply
    • Good answer Ken Benson, "you have COPD" " do something about it."
      Reply
  • I just re-read this... To me this article sums up the very reason that I love what I do as a respiratory therapist. This is worth the read. Thanks for posting this!
    Reply

Join Us on COPD360social

Sign In to Participate
Or register to become a member