Patients with end-stage COPD did not ask for help because they felt normal and did not realise the situation could be improved
Why do patients with end-stage chronic obstructive pulmonary disease (COPD) not actively ask for help?
Outpatient clinics in 4 hospitals and 1 specialist centre in the Netherlands.
A purposeful sample of 11 patients 61–83 years of age (73% men) who had Global Initiative for Chronic Obstructive Lung Disease stage IV COPD were identified from a sample of 82 patients from a quality of life study.
In-depth semistructured interviews were conducted, each lasting 1.5–2.5 hours. The first question asked was “Can you describe a normal day?” Other topics included activities of daily living, medical and informal care, social support, stigmatisation, anxiety, and the future. Interviews were audiotaped, transcribed, and analysed using an iterative process.
Patients with end-stage COPD had both physical and social limitations. Breathlessness and anxiety were the most common physical limitations. Patients were afraid of suffocating because of severe breathlessness. As a result of physical limitations, patients became less mobile. They did not leave their houses in winter because of bad weather or to avoid catching a cold, which could lead to pneumonia. 2 strategies were used to cope with limitations. Some continued daily activities with modifications (eg, taking breaks or using aids), whereas most patients avoided all activities. For example, a patient who used to go for walks indicated that he no longer felt “joy” in doing so because he became breathless after walking 100 metres. Another patient said “I live in that chair for 99% of the time.” Whereas patients who are inactive typically become dependent on others for daily functioning, patients with end-stage COPD did not actively ask for help. This is because they did not consider their limitations to be abnormal or realise that their situation could be improved. Patients with COPD distinguished between “having limitations” (eg, breathlessness) and “being ill” (eg, bacterial infection). Patients did not regard COPD as an illness because they were at the end-stage of their illness for a relatively long duration, which allowed them to slowly adapt to their deteriorating health. Patients compared themselves with other people of the same age who tended to have chronic illnesses and take medication, and thus saw their limitations as part of the normal ageing process. Similarly, other people did not recognise patients with COPD as being ill because COPD affects the lungs and thus is less visible. Patients with COPD did not realise that their situation could be improved because respiratory physicians told them that “their lungs would only get worse” and “there was nothing more the physician could do for them,” leading patients to assume that they could not get help. Because patients regularly visited respiratory physicians, they did not always feel the need to discuss lung problems with their family physicians. Doctors did not discuss patients’ limitations and strategies to improve them, course of illness, or expectations for the future.
Patients with end-stage chronic obstructive pulmonary disease did not actively ask for help because they did not perceive their limitations as abnormal or believe they could be helped.
Habraken JM, Pols J, Bindels PJ, et al. The silence of patients with end-stage COPD: a qualitative study. Br J Gen Pract 2008;58:844–9.
The study by Habraken et al suggests that some patients with COPD do not perceive their limitations to be abnormal, which may be an adaptation to the illness situation, and they are not aware of opportunities for improvement. Many unanticipated reasons may explain why patients with end-stage COPD do not ask for help, and the ability to account for the unexpected is what makes the qualitative approach used here appropriate. The results suggest that at least some healthcare providers are not asking appropriate questions or are not listening to patients’ concerns.
The findings provide a glimpse into the difficulties faced by these patients and suggest that a gap exists in the care provided to them. Fundamental to management of COPD is recognising that reduced oxygen supply results in the hypoxic drive and the potential for severe fatigue and dyspnoea. From the point of diagnosis, patients deserve a collaborative approach to care among primary care providers, physical therapists, occupational therapists, nurses, and social workers. This approach would focus on helping patients to conserve energy on a daily basis so that they can engage in activities that improve quality of life. Patients with COPD are living with it and require interactions with healthcare providers to foster a sense of hope. The trajectory of the disease can be misleading in that it can imply that patients who are ill are on a downward spiral. However, patients have unique needs and can improve with appropriate interventions.1
Patients indicated that care must accommodate the breathlessness they feel, helping them to realise that improvement is possible. Nurses can help patients maintain hope through the transition from “breathing freely” to “fearing breathlessness” by asking appropriate lifestyle questions.2