A pain in the back

Yusuf is a forty-five year old immigrant from the Middle East to a Nordic country, where he has lived for twenty-three years. He is well-established, speaks the language fluently, has a family of three children and a respectable job as a quality control manager in a manufacturing company.

In 2000 he began to have severe and more or less continuous lower back pain. His doctor was unable to make a diagnosis and prescribed painkillers. He did not make a referral or suggest any alternative. Further visits resulted in a similar outcome.

Desperate for relief, six years after the problem began, Yusuf visited a hospital out of his own locality where the investigation revealed posterior fusion of L4 and L5. The specialist advised him that there was no remedy other than an operation with a 70% chance of success. There was no discussion of prognosis without the operation.

He was immediately referred to an orthopoedic surgeon in a major, metropolitan hospital where three visits confirmed the diagnosis and the single option of an operation was offered, with the same chance of success advised. He was told that no-one recovers 100% from the operation, but that the severe chronic pain would be substantially relieved if all went well. At the time, Yusuf felt that the surgeon had been careful in explaining the procedure, risks and associated issues, and had left the decision firmly with him.

Yusuf is highly computer literate and spent a good few hours researching his problem on the internet and looking for alternative solutions, particularly those that might avoid surgery. Reviewing a wealth of material, there appeared to be no alternative.

Still in severe pain, he waited five and a half months before he was called to hospital. On arrival, he was told the operation had been cancelled, for reasons that were not clear, and was sent home. A fortnight later he was telephoned at work and told the operation would be the next day.

During his six days in hospital he was groggy and uncomfortable, but felt as though there was an improvement, in spite of his knowledge of the level of analgesics he was being given. He was discharged with a short-term supply of a decreasing dose of morphine.

On discharge there was no information about follow-up appointments, nor about the likely progress of his recovery, nor about the possible signs of a bad result.
Within a few days of his return home, he was beginning to feel acute and recurring pain in several parts of his body, and, as the morphine was phased out, it became severe and chronic again, though dispersed quite differently than before the operation.

He decided to wait for three weeks to see how things developed, also giving up the morphine early as he felt uncomfortable with the side effects. He made one phone call to the department, when he asked about the meaning of the pain he was suffering, and a nurse advised him to 'relax and wait.' There was no other contact from the hospital.

At this stage, he wrote a long and detailed letter, elegantly composed on his computer, outlining the locations and nature of the pain he was experiencing, including front and back images of the body pinpointing the sources of pain. This communication was hand-delivered to the hospital.

There was no response to this and, after a week, he sought the intervention of a doctor friend who called and left a message for the surgeon requesting a return call for discussion about the patient.

A few days later Yusuf received a one and a half line email from the surgeon. This made no mention of Yusuf's conscientious communication, nor his continuing problems, but simply offered a follow-up consultation three months ahead.

A couple of weeks later, Yusuf received a standard pro forma letter inviting him to an appointment only three weeks ahead. 'Welcome to the Orthopoedic Department' ran the rather breezy headline. He was instructed to inform the hospital if he could not attend.

Yusuf is a good-natured, trusting man. He does not blame the surgeon for what appears to be the failure of the operation: 'If I can't trust people with knowledge and experience, who can I trust? They tried to help me,' he says. The 70/30 risk was clearly explained to him (and he had two friends who had had successful spinal operations). Though he had only positive expectations, he has courageously accepted their disappointment.

What, then, are the failures of the surgeon and the hospital in caring for this model patient?

You could go through the story and mark the points at which you feel things could have been done better, and add others which you feel are evident from the text - then check your points against the list that follows.

The most obvious failures:

• The first doctor did not pursue the problem with any degree of thoroughness, nor seek a second opinion nor make a referral to a specialist (maybe the arrogant assumption that he 'knew what he was talking about'?)
• This first doctor left the trusting Yusuf believing that there really was no remedy, and condemned him to six further years of pain, unrelieved by any hope of change
• While the specialist was frank about the 70/30 success/failure risk, he did not communicate anything about the effects of failure, nor make any comparison between Yusuf's prognosis without the operation and the possible conditions resulting from failure. While such information may not have changed Yusuf's decision, knowledge of the relative risks of two courses of action is a critical part of making a responsible, balanced decision about taking either one of them
• While common, the waiting period for the operation seems inhumane to this author
• The last-minute cancellation of an operation (also not uncommon) is a deeply distressing experience for a patient who has prepared themselves mentally, organised their personal, family and working lives for absence, and built up an optimistic expectation of a solution to their problem
• Whatever the reason for cancellation, the patient should be given an honest explanation: 'We're really sorry; we messed up and overbooked' - or something of the kind. Yusuf received no explanation.
• A last-minute summons for an operation has an equally damaging effect: puts a patient into a state of disorganisation and panic while they make hasty (and maybe difficult) provision for their absence from home and work - a poor state of mind and body in which to undergo major trauma
• The discharge communications were appalling, particularly the absence of any briefing as what he should expect in the early days and how he might interpret physical signs; what might indicate failure and what he should do; and the absence of any follow-up arrangements or contacts at all
• His enquiry phone call to the hospital was not taken seriously; no support or concern was shown and it was probably dealt with quite inappropriately by a nurse, rather than by the surgeon himself
• The absence of a response to Yusuf's careful communication about his suffering (a powerful cry for help) was entirely ignored, indicating a degree of indifference to patients
• The vestigial email, prompted, it seems, only by third party intervention, made no acknowledgement of Yusuf's contact, nor his suffering, and offered further contact only at a ludicrously distant point in time
• The impersonal summons to a seemingly arbitrary consultation some weeks ahead again reinforced the impression that the hospital had little idea who he was (other than one of their patients) or that he might have any claim to special attention
• The inappropriate (offensive) tone of this communication is indicative of the worst kind of bureaucratic mind at work - one which has no grasp at all of the possible state of mind of a recipient and of the impact that such a communication might have: no audience empathy

And so it goes on:

•  This is a patient who has been failed by (in his view, blameless) surgery, leaving him with a potential lifetime of pain, and there has not been one single note of regret or explanation or concern; no recognition of his uniqueness and its demands for compassion and communication
• He wants, needs, investigation of his current problems, and information about them and about the future - but he must wait, without support or contact from those who are responsible for him.

Were Yusuf anything other than the generous, long-suffering chap he is, this case might well have pushed him to aggressive measures to make himself heard, even to initiating litigation out of sheer frustration and desperation at the failures in commitment and communication.

Where do you stand?

As you read this story, did you feel excuses and reasons on behalf of the surgeon and/or the hospital popping up in your mind? It would be only natural if you did, but you can probably also understand how poor a filter they are for fully grasping the patient's perspective - how truly irrelevant and distracting they are - more like a brick wall, in fact, hiding the patient completely.

Having a sensitive and accurate empathetic understanding of patients' perspectives may sometimes be acutely uncomfortable, embarrassing or distressing. We should not defensively try to avoid such disturbing feelings, because - more likely than not - they alert us to a dimension of truth without which our thinking, planning, behaviour and communications will inevitably be partial and defective. In this case, as well as feeling the impact on the patient, we certainly need to understand the causes of the failures (explain them at least to ourselves) and to do everything possible to remedy them, either at their very roots or in the way that communications deal with deficiencies.

Postscript

Two years after this case study was written, Yusuf is still waiting for someone to take his problems seriously, though a specialist at a pain clinic has taken him on and will try to help.