It is clear, that everyone has their own frame of reference for their interpretation, context and use of the term 'harm', together with the narrative that goes with it. In any debate or discussion, it is helpful to form a view or even ask, exactly why or how someone formed their own views or perspective on a topic. Here's my own perspective on 'harm' ... a personal story, grounded in altered haemodynamics, musculoskeletal trauma, clinical reasoning and decision making.
I’m going to tell you a very personal tale of actual, real measurable material harm, as a direct result of inappropriately applied health care. It is a story which I wrote, but never thought I would publish. I have only ever revealed it to a handful of people, so as I take you (as a reader) into my confidence, do bear with me, as I eventually get to my point. It may go some way to explaining why for me, asking for harm data, is not some kind of game, but rather a serious and genuine question, with a potential end goal in mind.
I’d not been qualified that long as a Physiotherapist, when my Mother suffered an injury. It is a story in keeping with the title of this BLOG. My Mother’s name was Jessie … and my wife always described her as a Mrs Pepperpot like character. She was in her early 70’s, a short rotund, jocular lady who always seemed full of fun. She enjoyed painting, flower arranging, pottering about in her extensive garden and, as she called it ... “bending her tummy” (going to the Church hall exercise class). She phoned me on the day she twisted her ankle in the garden, I had a quick look, but she was in a lot of pain and the ankle was already very swollen. I decided to take her to the GP. He examined her and confidently explained from his physical tests that she had ‘sprained’ her ankle. He advised her to rest, ice, compress and elevate, the management recipe (at the time) for such injuries. I took her home and we dutifully followed the Doctor’s instructions, but I remember she was in a lot of pain and she could hardly weight bear. I was a little worried, but I tried to re-assure her, and left her with an ice pack and her leg propped on up on pillows, telling her that I would be back the next morning.
The next morning things were not good, she
told me she had had a terribly painful night and could not stand the weight of
the bed clothes on her ankle, I looked at the ankle and a bluey-red bruise was
already apparent and the swelling could only be described as like a balloon. I
called the Doctor; he listened patiently to my description, then re-assured us
that this was a “normal soft tissue response to injury”. He advised some
analgesia and a little gentle movement “as tolerated” and to continue with the
RICE regime. I managed to locate a pair of crutches in the loft (every physio
has crutches in the loft … don’t they?) and proceeded to teach her how to use
them to get around. She seemed a little happier now that she could potter about a
little and the analgesia was taking effect. Two weeks later, she was still
unable to weight bear properly and remained in a lot of pain. Despite the RICE
regime the ankle remained very swollen, very painful and very sensitive to
touch.
Now a little worried, I’d been scanning the
text books (back in the days before Google) and found the section on traumatic
avulsion fractures of the ankle. I asked her if she had felt or heard anything
when the ankle twisted? She paused briefly, and said, “just a popping sound
like a chicken bone”. My eyes widened and I reached for the phone. I explained
the situation and the Doctor agreed to see her at the end of his list. He had
another look and this time tried to palpate the lateral malleolus … Jessie
almost jumped through the ceiling … “It’s terribly tender Doctor, you can’t
really touch it,” she explained, clearly embarrassed. “Mmmmm” he said, “I think
we’d best send you for an X Ray, just to check” he reassured her with a smile.
“Do you think it might be broken Doctor?” she asked, looking a little worried.
“We can’t really tell till you’ve had an X ray,” he explained. “So I think we’d
best be on the safe side”.
Sure enough, the X Ray at the local hospital
revealed a small avulsion fracture of the lateral malleolus and it was decided
to treat it with a back slab immobilisation because of the extensive swelling. She
seemed much happier now that she had a diagnosis and the smile had returned to
her face as she joked with the medical staff and toddled off (non-weight bearing)
with her crutches.
6 weeks later she returned to the fracture
clinic, the back slab was removed, an X Ray taken, and she was given the all
clear to begin to weight bear “as tolerated”. I quietly listened to the
instructions and exercises given by the physios and secretly suspected that my
role would be to provide a little encouragement and guidance. As it happened,
my role was minimal as she got on with the prescribed exercises and steadily began
the process of weight bearing. Two weeks later she had progressed to a stick
and things were going famously, but one thing troubled her, although the pain
was now manageable, it still seemed very swollen. I reassured her that that was
probably normal and that it would go down in time. It did go down… until 4 weeks
later.
“I’m a bit worried,” she said, when I called round. “I’ve been pottering in the garden and I think I must have a rash or something, my ankle has gone all swollen again” and look at it” she said, pointing to the red, swollen ankle resting on the pillow. I’d never thought to measure the swelling (clinical tip), but it looked much more swollen to me and it was certainly redness extending up to the calf. “Can I touch it,” I asked, leaning forward to palpate the ankle “gently,” she said, “oh and my calf has started to hurt too,” she added. I pressed my thumb and fingers into the warm, swollen tissue, they left an indentation, there was obvious pitting oedema. Deep vein thrombosis came flooding back to my mind, I recalled the lectures, the text books, red, hot swollen, pitting oedema, history of trauma, immobilisation, Virchow's Triad etc. etc.
We were soon sitting in the Doctors waiting room. “What seems to be the problem Jessie?” he said smiling. She took of her shoe and sock and without a word nodded at the swollen, red ankle. “Mmmm …” he said again, observing the temperature and pitting oedema, it looks like a case of phlebitis he said confidently. “Oh dear, that sounds bad” exclaimed Jessie, speaking up for the first time. “Oh … it’s nothing to worry about," said the Doctor reassuringly, noting her alarm at the undecipherable medical jargon (clinical tip). “We see it quite commonly after periods of immobilisation, we need to keep an eye on it, and if things don’t settle down, you may need some anti-inflammatories or maybe antibiotics for the inflammation. Oh … and I’ll ask the nurse to get you some compression stockings”. The Doctor seemed very confident and I was a newly qualified Physiotherapist barely making sense of all the information I’d acquired, but I couldn’t help myself … “How can you be sure that it’s not a DVT,” I stuttered unconvincingly, my mind racing. He shot me a glance, and putting two and two together accurately said, “Aaah … I remember now, Alan … you’re fresh out of Physiotherapy School aren’t you? Where are you working these days?” He paused, clearly thinking through his response, I didn’t answer. “Well we can never be entirely certain with these things, but I’ve seen lots of similar cases and I think it is phlebitis … BUT (he said with emphasis) we should keep an eye on it and if things don’t improve we’ll need to send Jessie back to the hospital for some tests.”
4 or 5 days later (I don’t recall exactly) Jessie
became feverish and breathless and was rushed into the local hospital. Everything
was a blur, I vaguely remember some discussion and argument among the Doctors
about her diagnosis. Eventually, she was sent for Duplex ultra-sound scans and was
urgently medicated for the DVT that was revealed on the scans. She died in
hospital 2 days later from the complications of a pulmonary embolus. The post
mortem detailed both pathologies very clearly.
The family were naturally shocked, her granddaughters
were too young to understand that they would miss out on hours of fun,
painting, flower arranging and pottering in the garden with their grandmother. The pain of the event was immeasurable and had an impact across generations.
There was talk among Jessie’s brothers and sisters, of misdiagnosis and medical
malpractice; my head was in a spin. I arranged a meeting with the medical
director of the hospital and the GP. We discussed the case and the events that
led to Jessie’s death … they acknowledged that the management perhaps could
have been different … that clinical decisions could have been expedited, the
tests done quicker. I observed the pained look on their faces. They called it a
“tragic case”. I asked them if they had learnt anything, the GP hung his head. Nothing
came of it, no blame was apportioned and the family chose not to pursue a
medico-legal case. I was relieved; it would have been too painful. I did make a request though, that they use the root cause analysis of the case as training for medical staff, Doctors, Nurses and Physiotherapists alike.
So … how do you reflect on a case like that,
and what prompted me even to tell the story?
Well actually it was and still is, the current
narrative in MSK physiotherapy that re-awakened the memory of this case and
prompted me to want share the story.
I’ve watched with increasing discomfort and dismay, a range of
prominent SoMe commentators from top researchers, bloggers, to every day
Twitterati (including patients), confidently asserting that certain physiotherapy management methods are, in
their words ... “harmful”. When I politely ask for data to support this contention, it becomes clear that (to date) there is no data. There is however, a quite reasonable associative argument, which though clear to see, remains unquantified. A debate has ensued and is still ongoing, about the use and definition of the
word ‘harm’ and it became apparent that there are many. Similarly, everyone has their own particular frame of reference for their interpretation and context for the use of the term 'harm'.
If we go back to Jessie’s case in the cold light
of day, the raw data = 1 premature death.
Was there measurable harm? .... Yes.
Was there immeasurable harm? ... Very likely.
The unmeasured psychological trauma has not been captured … how could it be (effectively)?
Was there immeasurable harm? ... Very likely.
The unmeasured psychological trauma has not been captured … how could it be (effectively)?
Was that down to the treatment/management in this case?
Maybe, … it certainly could be ascribed (in part) to delayed/misdiagnosis.
Above all, it was down to errors in clinical decision making, and that is what clinical encounters will always be down to … doing the right thing, at the right time for the
right patient, or as Greg Lehman would say, 'being a good clinician'.
A judgement on whether emotional distress is harmful or not, is entirely down to the ideas and beliefs of the individual. The very same thing applies to claims about treatments for MSK conditions. A period of ‘wrong’ management, may well have
delayed the application of the ‘right’ management (an ever shifting phenomenon in most MSK domains). That (in most cases) won’t
result in a measurable adverse event, but it could easily be an adverse or
negative factor (physically, psychologically or socially) affecting ultimately, the recovery of
the patient from whatever ails them.
Is that harmful?
... and if it is (?), are we able to successfully identify when it transitions into harm ?
... and if it is (?), are we able to successfully identify when it transitions into harm ?
Clearly, all of THAT remains open to debate. All we
can say is that IF a treatment is deemed ‘harmful’ … then it would be helpful to find a way to
measure that harm. With that knowledge, in order to prevent further harm, action could be planned and taken. To do this we would have to take into account the evidence on efficacy of
treatments, the health economics literature, the (captured) adverse events
data; we have to listen to patient opinions about what they consider to be value or effective care, or harmful care, in a range of environments and from a range of experiences. It is clearly a very complex multi factorial topic, which has
no easy answers and (currently) appears dominated more by emotion and volume than reason.
The polarisation of the debate and the ongoing manipulation of language, creates fear and uncertainty, and gives impression that there is only one solution.
The polarisation of the debate and the ongoing manipulation of language, creates fear and uncertainty, and gives impression that there is only one solution.
This BLOG post was NOT written or designed (because it contained a personal story) to be impermeable to critique, neither is it to suggest some kind of victim-hood, that would not have been Jessie's style nor is it mine. A single case study does not create or demolish a narrative. It may just however, explain the context of why I find the current physiotherapy narrative of harm uncomfortable, difficult, unnecessarily divisive. I wouldn't go as far as to say I'm personally harmed by it, but it is certainly one reason why I speak out against it. None of this makes me right either, and my own (or Jessie's) narrative does not negate anothers, everyone will have their own perspective and frame of reference for analysing the topic.
If this story promotes a just a moment of critical thinking in 1 single person ... then it will have achieved its objective. That said, It would be really nice to see a positive outcome of this debate, a lot less conflict and even perhaps, an agreement on a way forward. I know that Jessie would have been thrilled if she could have been, even a tiny part of that process.
Thanks for listening and for getting this far ...
Please feel free to comment or critique in the usual way.
Footnote: Jessie of course, did not die of
a sprained ankle (that would be UNSPEAK). Sprained ankles are not really harmful per se, and the doctors, nurses and therapists who deal with them, equally do not routinely deliver 'harmful' care. Jessie died from a pulmonary
embolus due
a complex series of human clinical decisions and events. Something I can
only attempt to square up or put down to ‘the frailty of humans’. The
root cause analysis of her case, made for an interesting, yet painful read.
I’m unsure whether it was irony or destiny
that took my physiotherapy career and specific interest, down the route of vascular speciality
and medico-legal work specialising in adverse vascular events and clinical
reasoning errors. I try to see some ‘good’ in that.
I've seen some very interesting and illuminating cases of real measurable, material harm and ongoing physical and psychological disability, linked directly to physiotherapy interventions over the years ... and still the cases still trickle in.
I've seen some very interesting and illuminating cases of real measurable, material harm and ongoing physical and psychological disability, linked directly to physiotherapy interventions over the years ... and still the cases still trickle in.
HT to Blaise Doran, Carl Davies, Greg Lehman and a few others who in their own ways, have helped me to shape and tell this story.
Author: Alan J Taylor is a writer and critic who tries to think about stuff . He works as a Physiotherapist, University Assistant Professor
and Medico-Legal expert witness whilst maintaining a small clinical work load. The views contained in this blog
are his own and are not linked to any organisation or institution. He once rode the Tour of Britain and worked as a cycling soigneur. He still enjoys riding a bicyle through the leafy lanes of Nottinghamshire and Derbyshire. In a World full of conflict and division ... like Bukowski, he 'writes to stay sane'.
