Frank discussions about the likely benefits and downsides of home oxygen are needed to manage expectations of palliative care patients with chronic breathlessness syndrome and their carers, Australian research suggests.
Qualitative research from South Australia involving semi-structured interviews with 19 breathless patients revealed the reality of home oxygen may not match expectations in all users. Patients included those with COPD and cancer patients with lung metastases.
The practicalities of living ‘tethered to the tubing’ including dependency, isolation and safety issues were a common theme in the interviews.
As well, many patients struggled with the perceived stigma of using oxygen and even nonusers of oxygen feared the associated stigma before its use.
Feelings of shame and embarrassment were reported while one patient said he did not want to use oxygen in public as it might make him look weak and vulnerable and set him up as a potential target for thieves.
“Oxygen, for many breathless people, appears to be simultaneously helpful and unhelpful; an incongruence in their lives that they managed daily,” the study authors said.
“They also had to come to terms with the discrepancy between what they expected oxygen would do, what it eventually delivered, and for some, this realisation led to disappointment.”
Dr Katrina Breaden, a nurse researcher from Flinders University, told the limbic that people using oxygen who were worried about stigma, may not use services as effectively as they otherwise would.
“Although from my observation with a lot of people, once they need it they will accept it, but sometimes reluctantly because of what they have in their mind about how this will look.”
“It does change their way of being in the world and their ease of going out in the community. It’s an isolating thing not just because of how other people view them but the practicalities.”
“People say that once they are attached to that ‘green slime’, the tubing, it’s hard to venture out and especially if they live alone.”
Dr Breaden said clinical practice regarding oxygen prescribing was changing.
“Clinicians are much more considered now about oxygen – that it may not be the best thing for this person given its stigma, given its tendency to isolate people, all those things that are wrapped around the use of oxygen. We don’t just jump straight to oxygen.”
She said education and reassurance were crucial in presenting options such as oxygen and slow release morphine to patients and their carers.
Patients’ experiences of oxygen during an emergency situation or in hospital also coloured their expectations, she said.
“It worked in hospital, but may not the best thing for people at home. And once they put it on, it’s very hard to withdraw it.”
“Before introducing oxygen, have that conversation with people about stigma so they can clarify misheld beliefs or misconceptions about what oxygen can actually deliver – because it doesn’t always deliver what it promises.”