This particular panel explores the conversation of breath, beyond simply breathing in and out. The discussion is titled Loss of Breath, which brings in views from different cultural and spatial lenses, expanding the notions of breath. The panel consists of Dr Megan Wainwright, who is a medical anthropologist and consultant in qualitative research; Professor Leslie Swartz, a clinical psychologist and distinguished professor of psychology at Stellenbosch University; Professor Lenart Skof, the head of the Anthropology and Philosophy departments at the University of Primorska in Slovenia; and Kate Binnie, who is a senior research associate with www.lifeofbreath.org, an HCPC registered music therapist, and a mindfulness and yoga therapist with specialist training in palliative care. The Loss of Breath panel was moderated by Dr Sinethemba Makanya.
Watch the full conversation here and keep reading for key quotes by each panellist.
- My presentation is going to be about the issue of policy and practice for home oxygen therapy. There's been a lot of talk about respirators during the Covid-19 pandemic, so issues around these technologies are increasingly at the forefront of people's minds.
- The first study, which I completed in 2013, was my PhD work at Durham University on Breathing and Breathlessness: Chronic Obstructive Pulmonary Disease (COPD) in Uruguay. My postdoctoral fellowship on “Using, Providing, and Producing Home Oxygen Therapy: a Comparative Ethnographic Study” was completed at the University of Cape Town, South Africa.
- There were two big shifts for me as an anthropologist. One was the shift towards looking at technology much more centrally. The other was policy, which is not easy to get your head around.
- I have to recognise that I'm at the tip of this iceberg because these studies are based on people who have a diagnosis, and they were generally accessing very good care for their illness. And we know that many lung diseases go undiagnosed.
- In South Africa, the criteria for oxygen prescription was generally in line with international guidelines. International guidelines are based on evidence, and evidence usually means evidence for effectiveness. So, for example, will a prescription prolong life or reduce exacerbations?
- In Uruguay, the prescription was much looser and it wasn't always in line with guidelines. There was a general recognition that it was kind of out of control. And, while I was there, the government was trying to regulate the prescription of oxygen through developing an actual policy that could then be implemented.
- One needs to take a step back and think of access; to have criteria for prescription outlined in the policy. Who is and who isn't being referred to prescribing institutions?
- My observations over the course of fieldwork corroborated a sense that I got from some clinicians: that patients who were referred to a tertiary-level prescribing institution spoke English fluently and were more economically advantaged. That helps them advocate for their care and get to that oxygen prescribing clinic. People who don’t have these advantages tend to fall through the cracks.
- There was also a rule that you couldn't have had an exacerbation or have been hospitalised in the past three months.
- Pulmonary rehabilitation is very effective for preventing hospitalisation. So is a medication called tiotropium bromide, which is now readily part of the package of care for someone with chronic obstructive pulmonary disease.
- Without those things, you can imagine how someone might end up in a constant cycle of being hospitalised and therefore never qualifying for oxygen.
- I'm going to be telling a story. I'm really interested in what stories can or can't tell us and much of the story comes from my book “How I Lost my Mother”.
- Her name was Elsie. When she was 17 her father dropped dead in front of her. She never forgot what she called the sound of a death rattle. A kind adult gave her a cigarette to calm her nerves, as she put it. And so, for me, begins the story of my mother's lungs.
- In those days, nobody worried too much about health. You're given your cards and you carry them. Elsie had no desire to be part of this group; part of these patriotic white Rhodesians who smoked as many cigarettes as they possibly could.
- In her eighties, she started developing stomach pains. We began the rounds of consulting health professionals. The first doctor did various investigations, but had Elsie down as a neurotic old lady, which she was, and as a result did not take her complaints very seriously.
- Eventually, I suggested that we consult a psychiatrist who had a strong interest in medical conditions. On a beautiful summer day, with me worrying about my mother being depressed, we went to see Michelle Rogers, a psychiatrist I knew slightly and who was known to be a good diagnostician.
- As soon as Michelle started listening to my mother, it became clear that my mother was not depressed. She was just waiting for somebody to talk to. She was animated, upbeat, and full of interesting stories.
- Michelle looked at all the pieces of paper we brought. She held the X-rays up to the light; X-rays that had been taken 18 months ago. She turned to us, having just looked at the X-rays through the window, and she said “there's something on your mother's lungs”.
- It turned out that 18 months ago a neurotic old lady in hospital had a spot on her lung. She was now in fourth-stage lung cancer.
- But she wasn’t the only one who had been fobbed off by a medical professional. There is also the story of my wife Louise's father, David, who was still living in Johannesburg and really struggling.
- He had a troublesome cough, for which he had seen his family doctor in Johannesburg a few times.
- So we took him to see our GP ... And they say lightning doesn't strike twice. He had stage-four lung cancer, which had been ignored by his doctor.
- Both my mother and my father-in-law had been fobbed off by doctors, effectively told that they were imagining things. Both were seriously ill, and both died of lung cancer.
- The point I want to make for this meeting is that there's health politics at work here, a politics of disavowal not along the usual and important lines of South African divisions of race and gender but of age. A submerged politics, which is increasingly important as Africa's population ages.
- My presentation is about the loss of breath and the forgotten cause of breath within the philosophical tradition. It's kind of an indication of a necessary way towards a new respiratory philosophy.
- The topic of respiratory philosophy is an epistemological and ontological topic as well as ethical. So, it is a kind of a philosophy that would like to argue that your breath or lungs are at the bottom of our existence and at the bottom of our very being.
- Why is respiratory philosophy needed today? We are facing many challenges in these really difficult times: wildfires and dust storms appearing throughout the world, the Covid pandemic, and racially based police repression in the US – notably with Eric Garner, George Floyd, and others who are being subjected to police brutality.
- Don’t forget the prominence of tear gas as a crowd control agent in Asia, Europe and North America, and it's clear that breathing matters and that a new paradigm is needed in humanities and social sciences.
- This new paradigm was called by some of my colleagues and myself “respiratory philosophy”. This new paradigm opens entirely new perspectives on the current crisis from a philosophical point of view.
- I would like to turn your attention towards a short chapter from American philosopher William James, “Does Consciousness Exist?”, from 1904.
- He says in this chapter, the stream of thinking is only a careless name for what, when scrutinised, reveals itself to consist chiefly of the stream of my breathing. The “I think”, which Kant said must be able to accompany all my objects, is the “I breathe”, which actually does accompany them. And then he concludes that breath was the original spirit.
- This is a really excellent contribution to the field of respiratory philosophy, because we all know that René Descartes famously said “cogito, ergo sum” – I think, therefore I am – and he totally forgot about breathing; about the bodily aspects of our existence.
- William James reverses this line of thinking and says that breath was “ever the original of ‘spirit’”. This is a really important aspect of early 20th century respiratory philosophy.
- Marx inaugurated the political aspect in earlier respiratory philosophy in his young economic philosophic manuscripts. He said that the forgotten material genealogy of breath must be regained in man exhaling and inhaling all the forces of nature.
- And, finally, Levinas in his book “Otherwise Than Being”, contends: “For there is a complex of significations deeper and broader than freedom which freedom animates. Freedom is animation itself. Breath, the breathing of outside air, where inwardness frees itself from itself and is exposed to all winds. All this signifies subjectivity that suffers and offers itself before they kick a foothold in being.”
- My presentation is about my clinical work with breathlessness, using very specific techniques.
- I trained as a music therapist, which is training in music psychotherapy. So it's psychotherapy training, where we use music as a way to connect with patients and to explore creativity with people.
- I'm not really talking about music therapy, but if you're interested in music therapy, there is a piece that I made called The First and Last Breath, which is a soundscape of breaths with a bit of singing.
- I've spent the last 10 years working in a hospice setting. With people approaching the end of life, I became very interested in people who were breathless, people particularly living with Chronic Obstructive Pulmonary Disease.
- I started to use breathing techniques and techniques from yoga in therapy. And I started to look around for evidence regarding the effectiveness of these and there wasn't very much.
- I was funded to go to Kings, to start to look at the evidence and develop my research interest in breathlessness and in body mind techniques to help people with breathlessness.
- Subsequently, I was picked up and worked with the Life of Breath project. We had clinicians, respiratory clinicians, philosophers, medical anthropologists, historians and literary scholars, all looking at this complex symptom; breathlessness, and we really explored and looked at, and uncovered the invisibility of breathlessness.
- What I am very interested in particularly, is this phrase “total pain”. Total pain was a phrase that was coined by Dame Cicely Saunders, who was the founder of the modern palliative care movement in the UK.
- When she asked a cancer patient what was wrong, what hurt, he said, all of me is wrong. And so this phrase “total pain” has become quite kind of well used within palliative care context.
- And it's really trying to illustrate that we can't just treat the physical pain with opioids, or other strong painkillers; we have to address the other aspects of our lived experience. And I would suggest that we could see breathlessness in the same way.
- So what is breath body mind integration? It's just my way of describing what I do with people who are suffering from breathlessness. So it's a practical therapeutic approach for the disease and then self-management of breathlessness and anxiety.
- I see breathlessness as a systemic construct. It's not just about the patient. It's about all the people around the patient, including staff, and I think my work with staff has been really interesting – really unpicking with staff how they feel about being alongside somebody who is very breathless, and how they can manage their own distress.