Sep 20, 2021
By Nicole Fogel
Breath of life: the challenges of living with chronic obstructive pulmonary disease
The nurse’s primary role is to reduce the client’s uncertainty, mitigate symptoms, and improve quality of life. With chronic obstructive pulmonary disease (COPD), clients feel fatigued with dyspnea, have limited exercise tolerance, and have a productive cough (Sethi, 2018). These symptoms result in a daily struggle to perform simple activities such as walking (Sethi, 2018), and often become more debilitating over time (Statistics Canada, 2019). Because COPD is a complex illness with no cure and the disease course varies, clients and their families face uncertainty about the present moment and the future.
Vulnerable populations experience health inequities and social injustices. Social justice implies that society is fair and that policies and privilege should not place vulnerable groups at a disadvantage through marginalization (Thornton & Persaud, 2018). In COPD, nurses should advocate for policies and laws that challenge social structures, privilege, and customs to be able to provide equitable access to disease education, smoking cessation programs, affordable oxygen therapies, and health surveillance (Pleasants, Riley, & Mannino, 2016).
COPD is a public health concern that is most prevalent across Canada in aging males, where 7.2% or 453,700 men diagnosed with COPD were 65 years of age and over, compared with 1.2% or 90,300 persons aged 35–49 years in 2019 (Statistics Canada, 2019). One of these people happened to be my grandfather.
How I learned that victim blaming isn’t the answer
People can either be miserable every day with a chronic illness, or they can learn to adapt and appreciate the times they are feeling good.
When my grandfather was diagnosed with COPD in 2016, I knew little about the disease. It was easy to accept bias and victim blaming — that if he had just stopped smoking, he would have avoided COPD.
I had assumed that smoking was the solitary cause of COPD and that if he just followed the treatment regimens the doctors were recommending, he would get better. I thought COPD was similar to having an infection — you take the antibiotic for one week and then you are infection-free for life.
Now, from my learning and reading in health care, I understand that those past assumptions were incorrect. COPD can be caused by a number of different lung irritants, and it is chronic with worsening progression. It is devastating to not be able to enjoy one’s usual activities and to have survival revolve around doctor visits.
My strong views on victim blaming with regard to smoking have softened. Smoking is deadly, but for long-term users it is not always easy to stop; many factors and influences are at play. Also, following a treatment plan half-heartedly will go only so far in stopping further progression of the disease; self-management requires consistent collaboration with multiple health-care professionals because relying solely on increasing oxygen therapy can make the lungs weaker from disuse.
My grandfather was prescribed an oxygen tank and reached a point where he could no longer stand long enough to go the bathroom. Early in his diagnosis, he would breathe heavily after climbing only a couple of stairs.
Based on his long-term history of smoking and his exposure to irritants from working in the air force, he was diagnosed with emphysema. He would show me the tube he had to blow into to monitor his ability to breathe out forcefully enough, and he had a pulse oximeter to ensure he kept his oxygen levels over 95% (often his blood oxygen level would be 65%).
He was advised to maintain followup appointments and go to a respiratory therapist to practise breathing exercises, and went from carrying around a portable oxygen tank to having a larger one in the house. The smaller oxygen tanks were more expensive, and he could not afford them. He would sometimes see past his worsening condition and focus on getting better; but at other times he felt hopeless and housebound, needing others to make his food and care for him because he was too tired.
His moments of positivity and despair taught me that having a chronic illness is a long-term battle, with bouts of remission and exacerbation. It is acceptable for patients to feel every emotion; however, active self-care, symptom management, and requesting help can have a positive impact.
Even though my grandfather could not go to the bathroom on his own anymore and had lost a significant amount of weight, he found happiness in sharing his air force stories with his grandchildren. This taught me that people can either be miserable every day with a chronic illness, or they can learn to adapt and appreciate the times they are feeling good.
Implications for nursing practice
As a nurse, my primary focus is improving the respiratory functioning of clients with COPD and preventing further complications. Although I cannot truly know what the client is going through, I can be willing to understand and talk with them, listen to their concerns, and assess their uncertainty (Hummel, 2018). I can also educate clients and families on treatment regimens and the disease process as necessary. With effective communication, including repeating the patient’s statements to ensure I heard them correctly, I can better understand the client’s needs and implement comfort measures as required.
Ideally, specific nursing interventions would include opening the airway by administering bronchodilators, improving breathing through muscle training and pursed-lip breathing, improving activity tolerance through the use of exercise training or walking aids, and managing complications by monitoring pulse oximetry values and encouraging immunization against influenza to prevent infection. However, these interventions need to be tailored to the specific client, and all rely on adequate access to health-care resources.
The role of the social determinants of health
In general, social determinants of health (SDOH) such as education level and income affect access to treatments, care provided, and chronic illness progression and outcome (Bernazzani, 2016). Nurses should consider SDOH to provide more comprehensive client care.
Higher levels of education lead to better disease outcomes, and higher levels of income permit better access to treatments and healthy lifestyle modifications. Specifically, individuals with lower socio-economic status have a higher rate of COPD due to increased tobacco use and working in areas with a higher exposure to lung irritants (Pleasants et al., 2016).
Lack of support, inability to access transportation, or lack of cooperation and understanding about the chronic disease may prevent clients from receiving consistent care, leading to poorer health outcomes and progression of the disease. Fortunately, Ontario’s Assistive Devices Program provides financial assistance to eligible vulnerable individuals for home oxygen therapy.
Nurses are expected to provide the best client care; however, ethical dilemmas regarding prognosis and end-of-life care can arise with clients who have COPD (Torheim & Kvangarsnes, 2014). Some clients with COPD report that feeling breathless leaves them feeling isolated and “surviving” rather than living.
During exacerbations, clients might not opt for life-saving interventions such as administering bronchodilators and an oxygen supply, presenting a moral dilemma to the nurse. With a poor prognosis, financial burden, and increased utilization of health-care resources, clients may feel unmotivated to improve their condition and prolong their life, challenging the nurse’s duty of care. Choosing to withhold or withdraw mechanical ventilation at the end of the client’s life presents an ethical dilemma.
In my personal experience, clients with COPD arriving at the emergency department can be taking their last breaths. At such a stressful time, the nurse must gather all available information, speak to family members, and determine whether the client wants to request a do-not-resuscitate (DNR) order. This can be difficult if the client cannot verbalize his or her wishes.
In the case of my grandfather, he did not have an active DNR order. However, in prior conversations, he had expressed this wish, but the family urged the health-care team to keep trying all possible life-saving measures. The team had tried to resuscitate him, but my grandfather ultimately flat-lined. It is important for nurses to prepare the family for the possibility of this outcome and offer hope and support.
Nurses are in a unique position to reflect, inform themselves, and encourage clients with COPD to choose life. However, they have a moral responsibility to advocate for fairness, set aside personal biases, and attend to the client’s expressed wishes, while providing comfort for them and for their family members.
Bernazzani, S. (2016, May 1). The importance of considering the social determinants of health. American Journal of Managed Care. Retrieved from https://www.ajmc.com/view/the-importance-of-considering-the-social-determinants-of-health
Hummel, F. (2018). Uncertainty. In Lubkin’s chronic illness: Impact and intervention (10th ed., pp. 107–124). Burlington, MA: Jones & Bartlett Learning.
Pleasants, R. A., Riley, I. L, & Mannino, D. M. (2016). Defining and targeting health disparities in chronic obstructive pulmonary disease. International Journal of Chronic Obstructive Pulmonary Disease, 11, 2475–2496.
Sethi, S. (2018, November 30). Effective management of COPD in primary care: Challenges and opportunities. American Journal of Managed Care. Retrieved from https://www.ajmc.com/view
Statistics Canada. (2019). Chronic obstructive pulmonary disease (COPD), 35 years and over. Retrieved from https://www150.statcan.gc.ca
Thornton, M. & Persaud, S. (2018). Preparing today’s nurses: Social determinants of health and nursing education. Online Journal of Issues in Nursing, 23(3). Retrieved from http://ojin.nursingworld.org
Torheim, H., & Kvangarsnes, M. (2014). How do patients with exacerbated chronic obstructive pulmonary disease experience care in the intensive care unit? Scandinavian Journal of Caring Sciences, 28(4), 741–748.