M.C. Escher – Hand with reflecting sphere
It’s a common enough feeling but one that is rarely expressed. This patient did express it – or at least her husband did for her.
The patient had undergone multiple investigations and several procedures during three stays in hospital. Her GP had referred her for a review on account of weight loss and worsening debility in the hope that something could be done to improve her condition. Her anxious family described how she had gone downhill despite all that had been done. I nodded, unsurprised. That’s what illness, infection and hospitalisation do. Then her husband said,
“And during all this time, nobody has really treated her as a whole person.”
I paused. Rather than letting the comment slip by I asked him what he meant by that. Because everything that happened seemed logical and correct to me. Her condition has been a serious one, but the underlying pathology had been recognised and treated. Nature had determined that during this time energy was drained from her. It was not a result of neglect or mismanagement. But I knew what he was getting at. Her course had been punctuated by episodes of acute deterioration, and procedures had been done on an urgent basis. Several consultants had been involved, several teams, comprising what, twenty doctors? Onward plans had been made as she was discharged from each episode. Her general practitioner, kept up to date with cryptic discharge summaries, had observed with a careful but non-interventional eye.
I told them the story of her illness, as I understood it. A nine month saga. To catch up, to provide a sense of continuity in respect of the whole person, required careful explanation. As I explained what had led to what and why, the patient’s expression lightened and reminded me of the pupil who suddenly begins to understand a principle of mathematics or chemistry. It all began to make sense.
She left the room looking and sounding better. I had done nothing physically significant.
The reason I asked – or challenged – her husband as to what he meant about a ‘whole person’ was because I thought her treatment had been good. It was thorough, timely and appropriate. Yet for some reason it has not been satisfactory. True, she was not as well as she or her family expected her to be at this point, but the future was bound to see a gradual improvement. What more could have been done?
It struck me that what this patient and her family needed was not a minute assessment of each symptom, nor more frequent clinical reviews, but a degree of confidence that there was a guiding hand behind the arrangements that had been made. She felt like a pinball, shunted this way and that by unplanned events and opaque decisions. I knew, having read the correspondence with a better understanding of why each step had been taken, that there was a sensible guiding hand. Yet that hand was invisible to the patient, despite the name of the primary consultant being clearly visible on documents and procedure notes. The presence of a central pivot and controlling mind had not been made manifest through clear and measured communication.
What she actually needed, I concluded, was a more confident perception of where she and her body stood in the natural history of the disease that had afflicted her. If she could visualise better how her symptoms related to the diagnosis on her papers, she would feel less of a wanderer in the unfamiliar territory of illness.
Is it a luxury, to be told in plain terms what is going on? It would seem so, judging by the number of patients who appear bewildered in the maelstrom of events. I can understand why it happens. For doctors dealing with rapidly developing conditions or emergency situations the priorities are clear – make a diagnosis, make a decision, and treat. It is medically correct. Then, when the treatment has been completed and the anticipated response has been confirmed, the pressure is off. This would be the time to sit down and describe what has happened. But this recap often does not take place. New and more pressing cases have arrived in the hospital. Sometimes it is the most junior member of team who is left to tell the story and they may not understand all of its elements. They will certainly be unsure how to frame the future. The patient is discharged ‘better’, safe, but relatively disorientated.
So, my conclusion from this reflection is that a ‘holistic’ approach to medicine is actually quite easy to deliver. It does not require the specialist to delve into every symptom or system outside their comfort zones. It does not require them to be the patient’s GP (specialists are notoriously quick to deflect non-specialised problems back to primary care without so much as hearing patients out). It may be enough just to explain what is happening and why, where the patient sits in the network of involved teams and processes, and how the guiding hand that is rarely visible does actually exist. This hand is not omnipresent or dedicated solely to one patient. It does not promise to sense and respond to every little change. The guiding hand must make decisions and then pull away for a while to get on with other tasks. While it is away the patient may need to guide themselves. This is possible, but only if patients have a clear perception of where they stand in the story of their illness.
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