Just One More Question

by Niall Tubridy

  His scans and electrical test were all clear. He exhaled, not with relief but with frustration. ‘So, I am going mad then,’ he said.

  I had seen just a handful of these cases over twenty-five years in neurology, and mainly such patients were presented at ‘grand rounds’, when rare conditions are presented to a group of neurologists, especially if the treating physician is unsure of what is wrong or what to do next. It is a cornerstone of neurology, and is both highly stimulating for the doctors and in most cases also extremely helpful for the patients.

  Martin had a condition called paroxysmal kinesigenic choreathetosis (PKC). It was first documented in the early twentieth century in London in two patients with intermittent involuntary movements, like those Martin described, and the unusual spasmodic flailing is brought on by the initiation of voluntary movement. There have been many reports of similar cases since, and this odd excessive movement disorder (hyperkinetic as opposed to hypokinetic or reduced movements, as with Parkinson’s) generally begins in childhood. There have been reports of it running in families (though, to his knowledge, it didn’t in Martin’s). We don’t know why or how involuntary movements happen, but it has been suggested it may be a problem with the channels lining the nerves of affected people. More simply, it’s thought that the wires moving our arms and legs have faults – often inherited – that affect transmission of signals from the brain.

  It must be very strange to non-medics at times when we describe conditions like this that we know so little about. Inevitably, ‘dodgy wiring’ doesn’t cut it as an explanation for someone as curious as Martin, who fears his life is threatened, but sometimes that is the best and only thing we can come up with. People expect doctors to make a diagnosis and then be able to explain the mechanics involved before starting to treat them. Yet medicine is still something of an art; with a condition like Martin’s, it’s a question of listening, observing and tracking the patterns of disease, then formulating a diagnosis from the pieces of the puzzle.

  I was excited about Martin’s diagnosis; I explained that his life was not at risk, and that there was a treatment for the disorder. We use anti-epileptic drugs for a range of conditions: neuralgia, certain pain syndromes and even some movement disorders associated with MS. I prescribed one of these drugs at a very low dose for Martin and asked him to keep his diary as before. In spite of his understandable scepticism, given the slim information and the lack of other options, he tried the tablets. Within four weeks, the movements had stopped and he was back training for the Boston marathon.

  I followed him up for a few years, but he got tired of coming to see me once the movements had gone away, and his GP could renew his prescription. I see him from time to time around the city socializing with friends but we haven’t spoken. It may be that he doesn’t recognize me, or doesn’t want to recognize me; either way it appears that what he thought of as his brush with mortality is a distant memory. That’s all you really can strive for when trying to repatriate people to the land of the well.

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  DOCTORING IN THE TWENTY-FIRST CENTURY

  Doctors once seemed to have so much time to chat. Now it seems every moment of every working day has to be accounted for and patients (and, indeed, doctors) are more like numbers on a spreadsheet than people with complex stories that are the backdrop to their ailments. Knowing where a person is from, not just geographically but psychologically and emotionally, can frame how they might perceive their symptoms and their reactions to them. Taking the time to listen – to, say, how a relative who had a distressing time in hospital has instilled a subconscious fear of doctors – can reveal a lot more than a patient’s physical complaints.

  Time is the enemy of such interactions these days. We have a thing called KPIs – key performance indicators – where we are asked, for example, to see a set minimum number of patients each day; to try to discharge people as early as is safe from hospital to free up the bed for the next person waiting on a trolley; or to reduce the waiting-list times by seeing more people in less time. These are all eminently understandable goals, but I fear that they can miss the point of what we are trying to do. Previously the only ‘KPI’ was whether you were doing your best to get the patients under your care well and return them home. We still do that, of course, but try to do so for twice as many people in half the time. It can be emotionally exhausting for doctors and, I imagine, it must seem much less caring to the patients.

  I suspect trying to maintain the precarious balance between efficiency and empathy is one of the main reasons for doctors burning out. Everybody has a finite reserve of empathy and no one can possibly get on with everyone they meet. Working under pressure it is easy to see how difficult communications – and many communications in a medical setting are difficult – aren’t handled as sensitively as they might be. And a wrong word can cause antipathy bordering on resentment.

  It is a great privilege to look after people. Traditionally medicine has been perceived as being a high-prestige profession and doctors have benefited from that. But it is not always an easy job. It is interesting to note how aware we are becoming – finally, and at a snail’s pace – of the need for doctors to look after themselves. It is draining to try to stay in intellectual control while your day is an emotional rollercoaster. As a neurologist you can meet, back to back, patients in dramatically different circumstances – one whose problem you can resolve easily and another to whom you are giving a death sentence. You must stay inquisitive, analytical and, crucially, as kind as you can be when faced with either individual.

  Reading a patient’s emotions takes years of practice, meaning that doctors get it wrong for years, too. On top of that, a doctor will only have about thirty minutes (or less) to assess a patient’s entire life, how it has been changed by the illness and how that illness will affect those around them. Then the doctor not only has to come up with a diagnosis, which may affect the patient for ever, but has also to try to reassure and comfort them.

  Every word must be chosen carefully, as it will be picked over again later. Like all doctors, and regardless of my best intentions, I get it wrong at times: I will be too serious and arrogant for some, and too light-hearted and flippant for others. Choosing the wrong word can take away the patient’s sense of hope, or make them feel that you are attempting to control their life. Though apologizing for a misstep is awkward, failing to pick up on a patient being upset is worse. You can hear about it through the grapevine and it’s dispiriting, both personally and professionally.

  During the banking crisis in Ireland a few years ago, I saw many patients who worked in the banks at various levels. They would admit to their occupation rather diffidently as the banks were then public enemy number one. I saw quite a few young bank workers at that time. They presented with a wide variety of complaints, mostly headaches. Regardless of their status in the bank, they told me awful stories of how customers would treat them. Tellers said that they would be routinely abused by customers of all ages and from all walks of life. Even the security guards would get nasty comments as they opened the bank’s doors each morning.

  At the time, there was a deep sense of anger and betrayal in the country, and understandably so, given the widespread suffering caused by the banks’ misdeeds and the resulting financial crisis. People listened to tales of management ineptitude and, sometimes, outright deceit, on the news, and were enraged. And it seems many considered any bank employee fair game. As a result of this misdirected fury, the bank’s staff were getting sick. These stressed young men and women came to me with severe migraines, tremors, pins and needles and chronic insomnia, among other complaints. I cannot recall diagnosing any of them with anything serious, but all were under extreme pressure.

  I think about this state of affairs when I hear yet another news item about the health service. In a similar way to the bank workers, hospital staff can be treated appallingly. I don’t suggest that things are ideal in the health service – far from it. Nor would I
try to pretend that mistakes don’t happen. It is totally appropriate that patients demand much of their doctors and nurses; after all, they are dealing with matters of life and death. But the sense among people when shortcomings become manifest that we are all in it together – doctors, nurses, patients, and all of our families and friends – no longer seems to prevail. With rising trolley counts, and delays getting people out of hospital because of insufficient resources in the community, a ‘them and us’ mentality seems to have taken hold and set some vocal patients against hospital staff. It is thankfully only a minority of people who take this approach, but those who shout loudest tend to get the most attention as we defensively try to appease them, neglecting the quiet ones in need around them.

  Aggressive patients, though a tiny minority, have a terrible effect on doctors and nurses who are doing their utmost to be courteous while giving their best care. Of course, some people are so scared by their diagnosis or the treatments involved that they lash out, but this doesn’t account for all of it. And it’s not just doctors and nurses who are at the receiving end of mistreatment, but medical secretaries and other support staff too. I’ve seen colleagues in every area being reduced to tears by the abuse meted out by some patients.

  As in most walks of life, it is the 5 per cent of people who take up 95 per cent of our time who we think – and fret – about most. Instead of celebrating the good work we do and the patients who are satisfied by our care, we spend an inordinate amount of time worrying about the 5 per cent. This small but vociferous minority of dissatisfied patients frequently warns us that our perceived shortcomings will be exposed in the media, particularly on Joe Duffy’s Liveline – ‘I’ll talk to Joe’ is a common threat; ‘I’ll destroy your reputation’ is another. Such threats serve to make doctors over-investigative as a defence against potential accusations of malpractice. This helps no one, particularly not an already over-burdened public health system.

  In more extreme scenarios, things can take a nasty turn. I once called the gardaí because a series of abusive emails, culminating in threats to myself and my family, began to seriously disturb me. This was after two years of doing everything I could to help a young man who would not believe that I was not out to do anything but harm to him. He was mentally unstable, but I had no recourse other than going to the gardaí; taking him to court would have been heavy-handed and embarrassingly public for us both. The gardaí had a word with him and he backed off.

  Doctors and nurses don’t expect unquestioning trust. We listen to the evening news and follow the newspaper reports of health service mismanagement and medical disasters as closely as everyone else, if not more. We too have our own fears, rages and frustrations at the imperfections of the system in which we work. But a lack of basic respect from a minority of our patients can make many in the health service feel even more demoralized.

  It is such a privilege to hear someone’s life story and discuss openly how various social factors might be affecting their physical health. It is great when we can smile, chat, share a laugh with patients, even in grim situations, and comfort them when they are fearful. It serves to remind both sides of our common humanity – which is ultimately what we all need to hold on to as we get through the most difficult times, together.

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  ‘AM I LOSING IT?’

  I recently awoke at around three in the morning, and could not remember the lead guitarist of the Rolling Stones, a band I have loved for years. Nothing. Not even that behemoth of excess … what was his name? Had this rock star been replaced in the musical jukebox of my memory by someone else? Beyoncé? Rihanna? Surely not? Might Keith Richards’ name assume less importance with time, dropping down the charts in my hippocampus? Or do we each have finite space for such memories? When I thought about it I wondered how medical students – who have to learn not just about neurology, but cardiology, the respiratory system, gastroenterology and a whole curriculum on surgery – ever cope? How had I coped?

  In worrying about our memory we’re all in the same boat, regardless of circumstances. The addled parent keeping an eye on the children while trying to prepare dinner and wondering how they’re going to get a presentation finished in time for work the next day will inevitably drop the memory ball now and again. Everyone has experienced losing their keys once in a while, or being unable to find their car in a supermarket car park. We jokingly refer to them as ‘senior moments’. Yet, if there is a family history of neurological conditions, perfectly healthy people worry that their quite ordinary human lapses in memory are the tip of the iceberg of dementia. Anxiety grows, silently at first, exacerbating their inability to concentrate, causing more memory problems and fuelling their panic about a neurodegenerative disease. Our minds are all so cluttered in this age of information, and we are so constantly and actively interrupted by competing demands on our time, that it is hard to delineate where routine forgetfulness ends and true cognitive impairment begins.

  I see at least four or five people a week who are worried about their failing memory. They will usually have experience of a parent or grandparent with dementia. And I will know within a few minutes that I’ll be able to send them home happy; if they have kept their appointment, travelled to see me alone, given a precise story about their concerns and – ironically – faithfully recalled their memory lapses, the chances are they are perfectly healthy.

  Yet even once I have performed the basic cognitive assessments (‘Who is the president? Where are we? What day is it?’), it can be very difficult to persuade them that there’s no great likelihood of there being any cause for concern. So we proceed. ‘Please draw the face of a clock, and put the hands to tell the time at ten past eleven. Give me as many words beginning with the letter F as you can in a minute,’ and I smile, ‘but no names or expletives, please.’ It’s eye-opening to see a worried person react to these simple tasks under the pressure of a doctor’s gaze. They will focus exclusively on their one or two mistakes, regardless of my reassurance; a truly unwell patient puts all of the clock face numbers down one side of the page, or lists only a few F words in the allocated minute. The latter rarely needs me to point out that there’s something seriously wrong.

  There is still no definitive test for Alzheimer’s. Instead, as is frequently the case in neurology, we try to piece together the jigsaw of the problem. At times, even the diagnostic tools we have leave doctors still sitting on the fence when we see someone making heavy weather of these basic tasks. A fear of labelling someone wrongly – a misdiagnosis – is obviously a major concern for medical reasons, but on a more human level telling someone they have Alzheimer’s is shattering, and may lead to depression and social withdrawal, which can further accentuate any cognitive problems. Would you want to know you had a condition for which the medical treatment is, at best, limited? If you did, what would you do about it? If we live long enough, a substantial proportion of us will eventually develop at least a degree of cognitive decline, yet we still discuss dementia in hushed tones, as if by not talking about it, it might go away. It won’t.

  Emma was an old friend from London who had moved back to Dublin with her husband and two children. Her mother had died of breast cancer when Emma was only fifteen and her brother about eighteen. Emma and I were close and had spent many a wild night out in Soho when I lived there. She felt terrible about pursuing her career as an architect in London while her father lived alone, and had promised him she would return to Dublin as soon as it was feasible.

  We lost touch for a few years while I was working in Paris and Melbourne, but when I returned to Ireland, I was glad to hear that Emma had been back for a few years herself, and we arranged to meet. My first thought when Emma arrived at the café was that she looked exhausted. I forgot about that as we got to catching up and she told me how she had fallen in love, got married and then become pregnant soon after I had left London. Her husband was a fellow Dubliner and they quickly made the decision to move home.

  ‘My da
d was delighted, of course,’ Emma told me. ‘I had gone home at least twice a year over the years to see him, and we still got on really well, so I was looking forward to spending more time with him.’

  Emma’s father, Peter, was now in his mid-sixties and was about to retire from his job lecturing in architecture.

  ‘He loved his buildings, and it was like a guided tour of Dublin when we went for our walks together when I was back, but he had no other hobbies,’ Emma said. ‘He played poker with a few old cronies on Tuesday nights and maybe had dinner with some sympathetic couples once a week, but otherwise he was alone in the world. I knew he’d be thrilled to have the grandkids and myself back, but I was worried he would become too dependent on us.

  ‘It was fine when we were back initially. If I’m honest, it gave us a chance to reintegrate socially as we had a babysitter on tap. Simon and myself could go out a lot more often than we might have without him around, so that was brilliant.

  ‘When Dad did retire, it was like a switch went off. He seemed lost and didn’t know what to do with himself. He would call around in the morning and offer to take the kids to school. He was spending more time with the kids than we were. He would come around for tea and turn up unannounced for Sunday lunch. I tried to set him up with some widowed mothers of friends, but he always said he would never meet anyone like Mum, and nothing came of his dates.

  ‘It was a lot of exposure after years of being independent in London and we had a row one Christmas. I shouted at him to back off a bit. He was heartbroken but, Dad being Dad, was very understanding. He more or less withdrew from our lives for a few months. In no time, the sense of guilt got the better of me and I called around to his place. He was in a desperate state and the house was pure chaos. There was food everywhere and he even looked like he had stopped washing himself.