The Body in Crisis

Now that I have some time to reflect back on my months at the university last year, certain events stay vivid, full of insight.

One such was The Body in Crisis event, organised as part of the ESRC Festival of Social Science in November. One of the key organizers was Susanne Kean, who I interviewed for the blog last year.

What brought me to the event was not just my interest in Intensive Care, but the fact that it would be an exploration of the experience from different perspectives, with contributions from health professionals, sociologists, academics, and – crucially – patients and their family members who had survived the critical care experience.

By the time someone is admitted to intensive care, one or more of their vital organ systems will be impaired or injured, their life will be in the balance. If they survive the experience, their bodies can take years to recover – the damage caused by muscle wastage, for instance, can last up to five years.

But as one of the contributors, Danny Kelly, reminded us, ‘We don’t just have bodies, we are bodies.’ A crisis for the body is a crisis for the mind and spirit too, especially when the person cannot comprehend what is happening, as is so often the case.

The accounts of former patients were riveting, particularly the details given by one young woman, who had been hospitalized for swine flu when she was 25, and quickly admitted to ICU, where she stayed for more than a month, her life in the balance. She brought a patient’s perspective to vivid life – the disorientation, the anxiety, the physical pain, the strange dreams and terrors that beset her – she spoke of dreaming that she had the feet of an elephant, then showed us a photograph of her in the ICU unit wearing huge blow-up sleeves on her lower legs which help with circulation and pressure sores. The mind make up its own reasoning when all around makes no sense.

The photographs that she had of her time in critical care, and scans of her first scrawled attempts at handwriting, seem to have helped her make sense of her experience, but she did not pretend that her recovery process was anything but gradual and prolonged. She had help from the Community Rehabilitation Service for six weeks, but said she was newly frightened of germs, and of coming into contact with the general public, and that the small amount of counselling she had received had helped her more than anything else. Even now, she said, two years on from her illness, things come back to her from that time.

It is estimated that around 25% of ICU patients will suffer from Post Traumatic Stress. One of the things that can help recovery is the construction and absorption of the ‘story’ – the exact sequence of events of a person’s illness, treatment and recovery, the separating out of what was imaginary and what really happened. It is standard practice in the modern army for injured soldiers to be accompanied by papers outlining the sequence of what happened to them – an understanding that psychologically we need not only to understand our story, but to be allowed to go over the details again and again, to embody that knowledge.

There is some interesting research work happening at the moment around the use of diaries and patient stories within ICU settings, and from the former patients at the Body in Crisis event, especially those most recently treated, I did get that sense of people going over the details again and again, just as one does in grief, to try to make sense of a new reality.

The ability of modern ICU units to snatch life back from the jaws of death is awe-inspiring, and to be celebrated, but for individual patients who have gone to that edge and back it is always a life changing event, a victory that is wrapped in calamity.

Susanne Kean: Beyond Intensive Care

Early on in my Edinburgh residency, I met Susanne Kean, a former critical care nurse and now a research academic. It was Susanne who first sparked my interest in the world of intensive care, a thread that has run through my writing over the past few months. Over coffee that morning, she talked about the experience of the patient in ICU, mentioning delirium as one of the worst aspects.

‘What’s the difference between delirium and dreaming?’ I asked.

‘You can wake up from a dream.’ said Susanne.

It reminded me of a time, years ago, when my father was in intensive care in Dublin. The line our family took was that his delirium was a kind of blessing – he knew nothing of his illness, was ‘out of it’ in a dream of his own making. Looking deeper into the ICU experience I now realise we were comforting ourselves with a falsehood. Delirium is more usually terrifying for patients, nightmarish, and incorporates strange interpretations of the uncomfortable procedures necessary for their medical care. Patients often think they have been kidnapped, or subjected to torture.

Susanne’s current work is to look at the experience of ICU survival for patients and their families. When I asked what had motivated her to enter nursing, it turned out that concerns of families and intensive care were there from the very start. When Susanne was eight , her two-year old brother became dangerously ill with meningitis. At that time, children were not allowed to visit the ICU, so Susanne and her sister knew what was happening only through witnessing the upset of their parents. She hated being excluded and she resolved to become a nurse.

"I am the knitting one – this being ‘in’ in the 1980s. 
The other two are my friends and we were waiting for 
exams. We had to ‘dress up’ for those."

Susanne graduated in Germany in the 1980s, when the hospital system was very task based – wards served 38 to 50 people, which meant taking up to 50 blood pressures or temperatures each round, and not getting to know the patients very well at all. She then moved to Switzerland where a very different system was in operation. Nurses looked after all the needs of fewer patients, and planned the care with the patients. It was a radical change for Susanne, who at first found the new system very slow, until she realised it was not about completing tasks in an efficient time, it was about basing care around the patients needs, rather than the system’s. This principle has defined her work ever since.

This interest in developing a quality relationship with her patients brought Susanne into intensive care nursing, where there is a one-to-one relationship between nurse and patient. I’m struck by the way that Susanne, throughout her career, has constantly moved forward, questioning the way healthcare is practiced and searching for ways to improve the experience of patients.

 "Shift handover in our kitchen. I was working as a
nurse on a septic surgical ward and loved it!
The other person is our charge nurse."

Her bedside nursing career ended when she developed back problems – sadly common among nurses. She went into management and teaching, but was soon drawn to the relatively new area of nurse-led research.  Britain was further ahead of Germany in the development of this and Edinburgh University was especially strong. Susanne learned English to access the research and did her Masters, and Phd here. ‘Research gives you evidence, and evidence gives you clout.’ she says. ‘Otherwise, people will not listen to you.’

She is now part of the inter-disciplinary critical care research group based in the School of Health in Social Science, carrying out a ‘longitudinal’ study looking at how patients who survive the ICU experience fare over time, not only their physical health, but the psychological, emotional and social effects of the stay.  A recurring theme of her interest is not just the patient’s health, but also the effect on the families and circles of friends who support the survivor.

‘An important but invisible aspect of nursing is establishing a relationship with the patient. In an ICU it is difficult to establish a relationship with the patient as they are normally sedated and attached to a ventilator which prevents speech. Even so, you talk to them, explain what you are doing, even if you don’t know if they hear you or what they can make sense of.’

In this setting, families provide the opportunity to get to know the patients.

‘In an ICU you don’t withdraw when the family visits, you have to stay with your patient. Nurses get to know family members well, and the families have someone on hand to talk to about the patient’s condition.'

'Families are fascinating. Each family member is different, and have different needs. One may want to know absolutely everything in the tiniest detail, others want to know no more than the general direction we are travelling in. Balancing those needs in a single communication is difficult, but they are part of the story, they are the people we discharge the patient to, you need to include them.'

A lot has changed since Susanne was kept from her tiny brother’s bedside by a system more concerned with it’s own efficient running than the wider effects on the families concerned. A stay in ICU is always a traumatic event, and the ripples of that event change patients lives for a long time, and those of their friends and family too.

"I grew up and for a while I loved to ride motorbikes.
This was while working in ICU!"