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.
I respectfully posit that in many of the cases in which PTSD is diagnosed following extensive ICU visits, it is the invasive treatment that patients are subject to, and not the disease process itself, which is most mentally traumatizing. The field of medicine grinds forward mercilessly on the assumption that should a person fall ill that all possible measures be taken to save that person's life. But there is a significant fallacy in this because it ignores the all-important quality of life, both during treatment and afterward, which suffers to varying degrees as a result. I should not have to carry papers on my person notarized and drawn up by a medical malpractice attorney (with copious threats) to get a medical professional to respect my wishes in regards to my medical care, as these are ethical/compassion concerns which go hand-in-hand with comprehensive care and should be a precept of training. Teach not just the how of medical care, but the why of it, in order to know the boundaries between one's duty and respecting another's autonomy.
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