Dying with COPD
What Will it be Like When I Die?
"I have COPD. What will it be like when I die? Will I just struggle for every breath and gasp until I can’t get any more air? That sounds like a horrible way to go That’s what scares me the most."
As a respiratory therapist I’ve heard concerned, frightened (rightfully so), patients ask these questions many times. I don’t have all the answers, not by a long shot, but I am here to tell you this: The answer is "No." If you are an informed patient, dying - whether you have COPD or not - does not have to be about pain and suffering. Rather, it should be all about care and comfort along with dignity and personal choice.
So, here we go. Sit down with me for a few minutes and we’ll talk about a subject none of us, whether we have COPD or not, no matter how old or young we are, want to talk about - our final days of life.
Never Say Die?
I want to start by saying that my patients in Pulmonary Rehab are generally the kind of folks who pretty much never say die. They are spunky and spirited even when things get tough. However, most of them do get to the point some time or another when they say, "You know what? I’m just tired. I gave it my all. I far outlived what the docs said I would. And I am totally at peace with leaving this life."
What about you? If you have "end stage" COPD with significant shortness of breath, you might be asking, "Is this it? Am I at the end of the road?" Many times patients have come into our program on the first day, thinking for sure that this was "it" and once they got started in rehab found that there are many things they could do to breathe better and live longer.
Am I at "the end of the road?"
As you ask the "Is this it?" question, you must ask yourself these questions too.
- Do you have a good doctor who takes time with you, listening to what you have to say?
- Have you and your doc considered, and ruled out, all treatments for your COPD including lung transplant as well as other surgery and procedures?
- Are you on solid, maximum treatment for COPD; best practice medications, and oxygen if your tests indicate you need it?
- Have you discussed taking medications such as prednisone that help you breathe better even if they might have some bad long-term side effects?
- Do you exercise regularly, even if very slow and minimal?
- Do you have a support group; family, friends, and other lung patients who understand what you’re going through?
- Do you find it hard to feel happy?
- Have you had tests or screening to rule out any other major problems, such as heart disease?
If you answer yes to each of these questions, you’ve done all you can to keep on going, every step is a struggle, nothing relieves your shortness of breath, and you have little joy in life, it is a good time to have a talk about this with your doctor.
What if this is "it?" - A few thoughts on dying with COPD
It is important to understand that calling Hospice doesn’t mean you have one foot in the grave and the other on a banana peel! It is alright to be in Hospice, even when you’re still active! In fact, it can allow you to be more active. Pulmonary Rehab patients can be enrolled in Hospice and still come to exercise. Being in Hospice takes pressure off of you about wondering how you’re doing, if you’re doing the right things - and it takes a lot of stress off your loved ones. It is alright to call Hospice. Think of it this way. If you talk with the people from Hospice and they say you don’t qualify, that’s good news!
Put it in Writing
Complete your advance directive . There are two parts to this: Designation of an advocate who will speak for you if you are not able to speak for yourself, and a living will outlining the care and treatment you want and the care and treatment you don’t want. Even if you’re young and healthy you should have an advance directive.
Spend Time with Your Family
Share your story by oral history, video, or other means so your spirit and your words will live on. Make sure your family understands that although a loved one seems to be "out of it," or unconscious, they can still hear. A dying person can hear who is in the room, the news of the day - "Grandpa, I hit a home run today!" - and most importantly, those precious "I love you’s" right up to the end.
If you’re the loved one of a person with COPD, give them permission to die. Tell them that although you’ll surely miss them, you will be able to go on without them and you will be okay. People who are deathly ill often hang on and on for fear that their loved one will not be alright.
Treatment. Some medications that relieve pain and anxiety are also respiratory depressants and doctors hesitate to prescribe them for people with COPD. Discuss this with your doctor and your hospice nurse, keeping in mind that care and comfort is the goal. The person who is dying - of any illness or disease - has the right to be as pain-free and as comfortable as possible.
Jane M. Martin is a licensed respiratory therapist, teacher and the founder and director of http://www.Breathingbetterlivingwell.com and author of Breathe Better, Live in Wellness.
Respiratory Therapist, COPD educator and author