Clinicians should be aware of patients’ feelings on starting home oxygen therapy for COPD, a group of international researchers has stressed, after research revealed widespread misconceptions and worries over social stigma and isolation.
“Understanding barriers, beliefs and expectations that patients may have when they hear that they are eligible for long-term oxygen therapy (LTOT), is essential in providing adequate support and improving adherence,” they said, in a paper published in the International Journal of Chronic Obstructive Pulmonary Disease (link here).
The small study, which involved 14 oxygen-naïve patients with COPD and a high symptom burden, revealed that some patients related LTOT to end of life, a finding which has not been described elsewhere, the researchers noted.
Therefore, “the idea of being eligible for oxygen should be regarded as very distressing for a subset of patients with COPD”, they said.
Beginning oxygen therapy was also found to have “provoked several emotions that clinicians should be aware of”, such as guilt and self-blame, for having ‘self-inflicted’ the disease and for not having been able to prevent the need for LTOT.
Also, interviewees anticipated stigma from receiving LTOT, with patients feeling that they could no longer hide the disease and were at risk of social blame from those who would judge COPD to be self-inflicted.
Participants also believed that LTOT meant they would become dependent on home care, be housebound or be moved to a nursing home, and be disconnected from social life in what was referred to as ‘social death’, according to the paper.
Anxiety was experienced by many patients, triggered by key misconceptions over LTOT therapy; patients believed LTOT to be the final option for prolonging life, and that it meant depending on a machine.
And they also expressed fears that the tanks might explode.
“LTOT is associated with an increased risk of fire and burn injury, although the risk is probably very low in non-smokers. Therefore, awareness of fire risk is essential, but a fear for explosion is unrealistic,” the researchers stressed.
It was also found that patients did not fully understand the goal of LTOT therapy, and so physicians should actively address any related misconceptions “since a lack of perceived benefit of LTOT is associated with non-adherence”, the paper noted.
These findings on patient perspectives on oxygen therapy will provide clinicians with “new insights in important topics that should be addressed during conversations on LTOT,” the authors said, while starting LTOT should be viewed as “a natural moment for advance care planning, because of the huge impact it may have on patients and carers”.