Accepting COPD
- michelledonaldson9
- 7 minutes ago
- 5 min read
Emma McArthur, RN
My grandfather had chronic obstructive pulmonary disease (COPD). It’s hard to say for how long because it took him being hospitalized in the ICU before we, as a family, knew he was in the end stages of it. Even while he was laying in the hospital bed, unable to catch his breath he refused the BiPAP mask. The mask that could help his lungs get the oxygen they needed and provide some relief to the overwhelming feeling of being unable to breath. He refused.
When he finally recovered (thanks to a bit of bullying from us to just put on the darn mask) he was offered home oxygen. He qualified to have it covered by the province, but refused. When asked why he simply said, “I don’t need it. I don’t have COPD.”
In the last years of his life, I would visit often. Some days he was breathing well, while other times he could barely make it to his favourite chair without the purple color in his fingernails and lips making itself known – a sign that his body was not able to get the oxygen it needed. But he never faltered, he did not need help and did not have COPD.
I think about this a lot. If he had accepted his diagnosis, would he have been able to embrace the multitude of supports available to him? Would he have been more comfortable? Would his quality of life have improved? I also wonder why he was unable to accept this diagnosis. What kept him from being able to come to terms with the reality of his life?
The answer isn’t easy and, I believe, multi-faceted. For my grandfather, grief played a big role in his inability to accept his diagnosis. Grief is, often, not something that a person thinks of when they think of a chronic illness. There are many reasons a person may experience this emotion when diagnosed with COPD. One of these is the belief that COPD is a self-inflicted disease and, although smoking is the number one cause, there are other unmodifiable factors, such as occupational hazards, air pollution and genetics, that increase the likelihood of getting it. My grandfather smoked for 30 years and didn’t smoke in my lifetime. Anti-smoking campaigns started in the 1960s and the first smoking cessation gum wasn’t approved for use until the mid- 1980s. That’s 20 years with no supports other than health campaigns telling you that it is bad. This is in addition to the fact it is addictive and an addiction that transcends generations. Although accountability is a crucial element to quit smoking, the odds weren’t exactly in anyone’s favor.
Another aspect of the grief that is spoken about by people with COPD is the loss of trust in their body. I saw this in my grandfather. For many years he would spend his summers biking 20 km a day and his winter mornings skiing. The loss of his ability to do this was slow and it left him with a loss of identity. A powerlessness as the body he knew for the last 60 years betrayed him and left him unable to do the things he loved.
Research has found that those with COPD go through four distinct stages of grief (different from the five stages one experiences after a loss or death). First being denial, in which my grandfather was deeply rooted, then resistance, sorrow and finally acceptance.
Resistance is when a person acknowledges they have COPD but focuses on maintaining their same lifestyle, even it means overexerting themselves and placing themselves at risk of an exacerbation. I would say my grandfather was stuck somewhere between denial and resistance because the process of grieving isn’t necessarily linear. He would sometimes say to me “Yes, I have it. But I can still bike 20km a day.” After which he would be exhausted and unable to do anything the rest of the day. At which point he would flip into denial and say, “Well that isn’t COPD. I don’t even think I have that.”
The next stage, sorrow, comes with mourning these losses and, for some, a loss of hope presents itself. This can lead to depression. I think this emotion is more complex than just “feeling sad” – the combination of feeling that COPD is “self inflicted” and the sense of powerlessness can lead to feelings of shame, embarrassment and depression. This may limit someone from seeking help and lead to social isolation. It’s important to note, again, that grief is not linear, and a person may come back to the sorrow stage years after moving to a place of acceptance. For example, a trigger, like being unable to run around with grandkids, may cause these feelings to arise. A good support system is key for these moments, as they can give you hope when a situation may feel hopeless. I often like to think about moving through this phase as re-framing hope. We may not hope for what we once did but we can reflect and change what we are hoping for. For example, we cannot hope that we do not have the disease, but we can hope that with supportive therapies we can continue to do what we love for as long as we can.
Finally, acceptance which is when a person begins to benefit from self-managing behavior. You know yourself best. I have an uncle who also has COPD. He was visiting us from PEI and when he woke one morning he told me he felt like he may need some prednisone in the next few days because he knew that an exacerbation was forthcoming. I helped him contact his PEI pharmacy and have them send the prescription to one near us. He used the tools available to him to ensure that he was able to continue his visit with us, which was important to him.
Understanding that a person may be in different stage of grieving is not just important for those with COPD, but for healthcare providers and caregivers as well. Knowing which stage a person is in allows providers and caregivers to target interventions and supports to meet the needs of the person, and modifying these to the stage has shown to increase motivation to engage in self-management of the disease.
My grandfather never made it past the first stage and, quite honestly, I don’t think he wanted too. It saddens me that his quality of life could have been so much better if he had accepted supportive therapies. I hope that anyone reading this article can find solace in the fact that you are not alone in what you are experiencing and there are supports available (see below).
LungNSPEI’s Living Well with Lung Disease – Online pulmonary rehab program:
PEI COPD Program (YOU can make an appointment yourself) https://www.princeedwardisland.ca/en/information/health-pei/copd-program
COPD and You; Online Health and Wellness NSHA: https://library.nshealth.ca/HealthyLiving/RegisterForPrograms#s-lg-box-16677815#:~:text=COPD%20and%20You
Inspired Program for those with moderate to severe COPD in NS: https://www.nshealth.ca/clinics-programs-and-services/copd-inspired-copd-outreach-program-and-copd-care-and-education-nova#:~:text=The%20INSPIRED%20COPD%20Outreach%20Program%20offers%20support%20to%20people%20in,with%20early%20stages%20of%20COPD.
Stop smoking supports
PEI quitting smoking support: https://www.princeedwardisland.ca/en/information/health-and-wellness/smoking-cessation
Nova Scotia quit smoking support:
References:
Boer, L.M., Daudey, L., Peters, J.B. et al. Assessing the Stages of the Grieving Process in Chronic Obstructive Pulmonary Disease (COPD): Validation of the Acceptance of Disease and Impairments Questionnaire (ADIQ). Int.J. Behav. Med. 21, 561–570 (2014). https://doi.org/10.1007/s12529-013-9312-3
Jerpesth, H., Knutsen, I., Jensen, K. & Halvorsen, K. (2021). Mirror of shame: Patients experiences of late-stage COPD. A qualitative study. Journal of Clinical Nursing, 30(19-20), 2854-2862
National Health Service UK. (11 April 2023). Causes (Chronic Obstrucive Pulmonary disease)
Prochaska, J. & Benowitz, N. (2015). The past, present, and future of nicotine addiction therapy. Ann Rev Med, 67, 467-486. 10.1146/annurev-med-111314-033712
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