Chronic breathlessness not only affects patients with chronic obstructive pulmonary disease (COPD) but also their caregivers, who are mostly women, according to a recent review.
The impact of chronic breathlessness in chronic obstructive pulmonary disease (COPD) creates suffering for both the patient as well as their caregiver suffer during these incidents, according to a paper published in BMC Palliative Care.
Investigators from Australia wanted to understand the experience of severe chronic breathlessness from both the patient and the caregiver perspectives. During these incidents, patients become reliant on their caregivers, and as a result, both can become restrictive in their daily activities. The authors of the qualititative study said few trials have looked at the experiences with breathlessness through the lens of the caregivers and patients together.
The researchers recruited 26 patients and their caregivers from within a phase 3 effectiveness, randomized, placebo-controlled trial evaluating sustained-release morphine for people with severe chronic breathlessness and COPD.
The patients lived in their community and were recruited between July 2017 and November 2018. Ultimately, due to various circumstances, 9 patients and caregivers were included in the final analysis. The semi-structured interviews were recorded and transcribed. The conversations lasted between 21 and 55 minutes.
The authors noted that 6 of the patients were men (median age 77 years) and the caregivers were mostly women, who were their wives (median age 70). The caregivers had been living with their patients for many years and solely providing the patients’ care. The research uncovered 5 themes that described the interviewees’ experience of breathlessness:
1. Shrinking world. The more breathlessness there was, the more reluctant the caregivers said they were to disengage from their caregiver role and leave the patient alone. The caregiver’s lives became almost as restricted as the patient’s lives. Experiences with breathlessness were described by both the patient and caregiver as having “good days” and “bad days” and some triggers such as temperature or humidity were identified, the authors added.
2. Mutual adaptation. Both the caregiver and patient reported adjusting. For example, the caretakers absorbed certain tasks to avoid the patient over-exerting themselves (such as cooking or shopping).
3. Comanagement. The patient and caregiver pair both managed the breathlessness experience, depending on the level of incapacitation experienced by the patient. When the patient was relatively independent, the caregiver mainly did more physically demanding tasks like the shopping or cleaning. The caregivers were especially vital during acute, uncontrolled breathlessness experiences.
4. Emotional coping. The patients mostly expressed annoyance about their lowered daily function, but breathlessness was more of an emotional challenge for the caregivers. As the second caregiver put it, according to the study author’s transcript:
“Just watching him trying to get his breath … That is horrible to watch. And there is nothing you can do to help. Just keep him comfortable and be there, whatever he needs … I try not to worry too much; I try to keep calm because I don’t want him to get worse.”
The acute episodes were described as “a worry,” “scary” and “awful” by caregivers and patients alike.
The caregivers also expressed feelings of giving up a part of their identity and being trapped in the caregiver role, authors said.
5. Meaning in the face of death. Many of the patients were aware of their condition but not afraid to die, the authors said; it was more difficult for the caregivers to talk about death and they felt more concerned about the future. The pairs felt it was important that the patient kept living a meaningful life. For the patients, that typically meant being close with the caregivers. For the caregivers, that meant bringing joy to the patient’s life, the authors wrote.
“Patients with COPD associated breathlessness and their [caregivers] report that breathlessness permeates all aspects of life,” the researchers concluded. “Patient and [caregivers] see their world shrink and cooperate to create optimal function for the patient-[caregiver] unit. … Involving both the patient and their [caregiver] is essential to create optimal management of chronic breathlessness. Chronic breathlessness is particularly heavy on [caregivers], who feel constantly anxious and have difficulties adapting to their role.”
Ferreira DH, KochovskaS, Honson A, Phillips JL, Currow DC. Two faces of the same coin: a qualitative study of patients’ and carers’ coexistence with chronic breathlessness associated with chronic obstructive pulmonary disease (COPD) [published online May 6, 2020]. BMC Palliat Care. doi:10.1186/s12904-020-00572-7.