The COPD support group
Senior Research Associate on the Life of Breath project, clinical music therapist and mindful yoga teacher Kate Binnie visited a COPD support group in Oxford to share some helpful techniques with the group. Kate shares her observations here…….
Seven people sit in municipal chairs drinking coffee and, as I walk into the community sports centre, they are all laughing. Lucy – the community respiratory nurse who set up the COPD support group 18 months ago – catches sight of me, waves and grins. It’s my second visit. At the request of the group, Lucy’s invited me back to share more body-mind techniques to help manage breathlessness. So, after a smattering of small talk I pull up a chair and ask how everyone’s doing. What is immediately clear is that the winter has not been kind. People living with advanced COPD become inevitably more breathless as their disease progresses. Over winter they may find themselves weakened by frequent infections, leading to increased use of steroid medications, antibiotics and, sometimes, to hospitalisation. Your worst nightmare says Shirley, darkly. She is just out of the hospital and shakes her head at the memory of the noisy nights and horrible food. I just need to get strong again now…. But I’ve lost my confidence. It’s really hard to get going again, y’know? I’m not sure I’m going to make it back to PR this time.
The most effective non-pharmacological intervention for COPD to date is pulmonary rehabilitation (PR). Exercise is very important for many physical and psychological reasons and almost everyone I have spoken to with COPD, who has managed to get to and complete a course of PR, has described huge benefits including getting stronger, more confident and – crucially – meeting other people in the same boat. (For more info on PR see the British Lung Foundation).
However, we know that only one in ten people eligible for PR actually complete it (Sahin & Naz 2018). People may have been offered a course by their GP or other healthcare professional but, for a multitude of reasons, they might not choose (or be able) to go. They might try it once or twice but not complete the course. One lady I spoke to said she couldn’t take the noisy, macho “gym” atmosphere (it made her feel anxious and exposed). Others can’t get to the local session because they don’t have access to manageable transport, or the friend they used to go with died and they don’t have the confidence to go alone. People I’ve talked to about getting back to PR after an exacerbation describe “giving up” and feelings of uselessness.
Shirley continues. I was doing really well. But then I kept getting infection after infection. I lost my mojo…. and now I’m just shattered. The COPD group nod in solidarity. I notice that Shirley takes little sips of breath between every trio of words and that, even though she’s talking openly and warmly to her friends, her shoulders are hunched right up to her ears as if she is holding herself together. She looks exhausted.
It transpires – as the conversation broadens out – that alongside the exhaustion and fed-up-ness of having routines broken and a sense of going backwards, that other, complex emotions are shared within this group, which has become an important safe place for its attendees. Fear of what more frequent hospitalisations mean and where it will all end, irritation over mix-ups with drugs and access to services and, behind all this, sadness at what has been lost, regrets about the past and anxiety about a shrinking future. A slight, elegant woman in her mid 70’s shrugs. I smoked. I smoked from when I was 17, but we didn’t know, you see….. Others nod at this too and there’s a quiet, sad lull in the conversation.
I see this as my cue. Last time I came and said Right, let’s try some yoga everyone cracked up and Ron told me he’d eat his hat if I got him to stand on his head. This time, they know a bit more about what to expect. I go through the information again. So we’re not going to bend ourselves up in knots, remember? (Some groans and oh no, miss, I want to wear my leotard!) What we are going to do is stay in these chairs, pop our shoes off and…. drop out of the head and into the body. I explain that what I’ve already heard is a complex web of emotions that can cause the mind to whirr ceaselessly, impacting on sleep, mood and on hope and making the breathlessness itself worse. Is this a fair assessment? Everyone nods. So, I continue, There are some really useful practices from the ancient traditions of Yoga and Mindfulness that are all about helping us to deal with that “mind stuff”. When the mind is churning away like a mouse on a wheel, running ceaselessly, the body responds to this with a highly tuned stress response. So the heart beats faster, the breathing gets more tight and shallow, we feel panicky and we can’t relax. We worry about the future and we worry about the past. This makes us feel even more breathless and trapped in a restricted body. Ring any bells? More nods. So – we’re going to go over some simple techniques, from the ground up, to help us feel more steady and safe, open and comfortable, right here and now.
Shoes come off. I hope that’s all I have to take off puffs Ron as I help him with his shoes. The steroids have made him big around the tummy… I used to be so fit he apologises, wheezing as he tries and fails to bend down to his feet. His wife died a couple of years ago. He’s lonely, like a lot of older people with COPD, whose insidious effects gradually erode energy and enthusiasm to get out and about into a world that seems too fast and frantic to negotiate safely.
We settle into our chairs and spread our feet into the floor. Everyone is invited to soften or close their eyes and rest their hands on their thighs. As we exhale, we drop our shoulders away from our ears and soften our bellies. It’s very quiet now. And so I take the group through a simple Mindful Yoga practice. We become aware of the felt sensations in the body – what is actually here. We direct our attention to the feet rooting into the floor. The feeling of the hands on the thighs. We notice where we are holding tension, and we soften there. Jaw, mouth, tongue, bridge of the nose, shoulders, belly. I peep at the group. Their faces are soft now and in repose. Only Joan is glaring at me and I raise my eyebrows at her. Ok Joan? I can’t hear you love she shouts. Ah, Joan is rather deaf. So I raise my voice until she nods that she can hear, and inwardly smile at the lovely irony of BELLOWING mindfulness instructions.
It is immediately noticeable to me (and to Lucy when we de-brief later) that Mindful Yoga Therapy (MYT) seems helpful in a different way to PR which – for these people who are all quite unwell – is something they feel they can’t quite reach. MYT offers practical techniques for developing body awareness through gentle, exploratory movements that direct attention to where we hold tension, synchronising the movements to the in-out breath and focusing particularly on the “letting go” sensation that accompanies exhalation. Most of us aren’t aware that we are holding habitual tension in the body – it becomes part of who we are. This may be because we are compensating (people with COPD commonly use accessory muscles to facilitate breathing, for example) or because of our lifestyles. Many of us don’t even realise that we unconsciously hold the body and breath when feeling chronically late, tired or worried (notice the tight jaw, the knot in the stomach that restricts the diaphragm, the hunched shoulders….). Some of these physical patterns may be connected with very early life experiences, particularly negative experiences such as disruptions in attachment or trauma (Emerson 2015). Most of us are not conscious of our long-held bodily tension and inefficient breathing patterns and how this impact on our wellbeing, or the potential for positive change and relief via body-mind practices such as yoga.
Back in the COPD support group we sit together making little adjustments to the posture (creating space for the ribcage, opening across the collar bones, softening the tummy so the diaphragm can release) and the constant instruction is to “sense and feel”. We don’t follow a set of prescribed exercises or a scripted protocol aiming to fix a problem or improve a particular predefined outcome. Rather, this practice is exploratory, with space for almost infinite tailoring to individual needs. No-one gets it “right” or “wrong” or does “better”. The intention is to offer people the opportunity to self-observe and learn what works for them, and to build a compassionate relationship with the body, the breath, and the mind-stuff. Crucially, the language I use is gentle and suggestive of invitation and observation (rather than rules and surveillance) and guided by verbs such as enquire, notice, allow, open, observe, accept.
I suggest that Mindful Yoga Therapy offers a “bottom up” sensory awareness training involving gentle movement that is both holistic (whole person; acknowledging the interdependence of the different aspects of being human) and heuristic (enabling a person to discover or learn something for themselves). This is supported by research from the Life of Breath project (Malpass, Dodds & Feder 2018) which reveals the way in which both affective (emotions) and sensory dimensions of breathlessness are improved through mindfulness practice for patients with COPD. The beauty of this approach is that it doesn’t matter how ill the body is, how compromised, how breathless, stiff or disabled. I have used Mindful Yoga Therapy successfully with patients with cognitive difficulties and in hospices right up to the end of life.
At the end of short session (which takes about 30 minutes) the COPD group is calm, relaxed and open. Everyone’s breathing rate, posture and affect has changed for the better and they discuss this. People ask when I can come back and if I can give them a recording or a video so they can practice at home. They say they can feel more space in their bodies and feel steadier in their minds. The student physiotherapist who has been on placement with Lucy suggests that this kind of approach might be really useful to integrate with PR and says she’s going to take away some tips to use straight away.
For patients at Lucy’s COPD support group, whose ability to move is severely compromised by their illness, “exercise” was acknowledged by them to be an important part of their treatment yet hard to access especially after an exacerbation or hospitalisation. I suggest that Mindful Yoga Therapy might offer such patients a way back in to a relationship with their bodies and breath that acknowledges this difficulty, building confidence to self-regulate anxiety around breathlessness, and thus regulating the breathlessness itself. It may provide a pathway back to more traditional pulmonary rehabilitation or provide a therapeutic alternative for patients with particular anxieties or co-morbidities (in this group alone co-morbidities included depression, anxiety, osteo-arthritis, diabetes and heart failure.)
Research from our collaborators at Breathe Oxford is leading the way on exploring and understanding the link between the brain and lungs; the mechanisms linking sensory and affective aspects of breathlessness. What I would like to see ongoing is a continuing communication between our research approaches (neuroscientific mechanisms = top down and exploring the lived experience of interventions such as MYT with patients = bottom up/phenomenological). Together, we may move the field forward to improve personalised care for patients with COPD and reduce the stigma that persists around complex symptoms affecting psyche-soma such as breathlessness.
What I would also like to see is policy and funding directed towards the enabling of more support groups such as those run by Lucy. With proliferation of social prescribing initiatives and acknowledgment of the need to shift the focus in health and social care to community-level prevention, support groups focusing on reducing social isolation, education (incorporating interventions such as MYT) and promoting wellbeing are promising and may reduce costs elsewhere. Evidencing such programmes are challenging, but again – by integrating research approaches including realist evaluations that acknowledge context and unpick complexity – with collaborative input from stakeholders (eg action research) it must be possible to challenge the dominance of the RCT!
Breathe Oxford will be presenting their research at the Royal Society Summer Science Exhibition (1-7 July) and Kate will be delivering Mindful Yoga Sessions to the public on 4-5 July and singing on 07 July. Kate runs Breath-Body-Mind integration courses for healthcare professionals here and can be contacted at [email protected] For more information about the COPD support group contact [email protected]