Just One More Question

by Niall Tubridy

  ‘Hello,’ I said quietly and introduced myself. I addressed her by her formal name and she said, ‘I’m Abigail, and I don’t go in for any of that title nonsense.’

  ‘OK, Abigail,’ I said, ‘I’m one of the doctors here and I have been asked to see you about the shake you have in your hand. Do you mind chatting to me for a while? Perhaps I can help.’

  She looked at me quizzically, as if trying to get the measure of me. She seemed suspicious but patted the bed beside her indicating where I should sit.

  From her medical notes I knew that in the lead-up to her admission she had not answered her phone for a day or two, so one of her friends had called around. When there was no answer to the doorbell a neighbour had let her into Abigail’s flat. The place was in chaos. Newspapers dating back years were strewn around as well as boxes of photographs and letters from her younger days. The bins were overflowing and there was food rotting in the small fridge that caused an unpleasant odour throughout the apartment.

  Abigail was in bed and had no idea who her friend was, so an ambulance was called to bring her to Casualty. The doctors confirmed she had severe pneumonia, and she was admitted to the geriatric ward, in a six-bedded bay with other elderly women around her. Her friends were told the outlook was not good and her son had been called to ask him to come home from Norway.

  Geoffrey arrived two days later. The doctors told him that they did not think she was strong enough to survive the infection. They would do everything they could, but advised that he prepare himself for the worst.

  He was furious. ‘What do you mean?’ he shouted. ‘She just has a chest infection. Surely you can treat that. They certainly could do better in Norway.’

  (Geoffrey’s reaction is not uncommon. With our mighty diaspora, we often find it is the people who are farthest away from Ireland who want to have the most input when their parents become ill. It’s something of an Irish solution to an Irish problem, as grown children, feeling the effects of guilt, homesickness and helplessness, weigh in on the family crisis. This may take the form of a critique of the Irish health service. If they live in any kind of developed country, as far as they are concerned the care where they are living is always better than that in Ireland.)

  The doctors pointed out to Geoffrey that they had spoken to his mother’s friends, who had outlined Abigail’s steady decline over the preceding year or two. She was confused at times about where she was, and even who they were.

  ‘Nonsense,’ he said. ‘I’ve spoken to her on the phone and she sounded fine to me. She must have been developing the pneumonia when they saw her like that. I want everything that can be done to be done.’

  After a few days of similar conversations the doctors could not persuade Geoffrey that perhaps the end was near for his mother and acquiesced to his wishes.

  They had already started antibiotics but the doctors had asked Geoffrey – her legal next of kin – whether they should have a DNR order in Abigail’s notes in the event that she were to deteriorate rapidly. Geoffrey was adamant about not allowing one to be put in place.

  As it was, Abigail was not in a position to give her own opinion. She thought she was still at home when I sat down beside her. We discussed her life and she could recall some of her earlier years. She told me about the grand dances she used to attend in London years before. She could not tell me what day it was (‘What does it matter?’) or even what year (‘Oh, they all blur into one at my stage in life …’) and I quickly understood I was irritating her with my incessant questions.

  She brightened up when the tea arrived, but expressed dismay at the lack of saucers and the absence of a proper teapot. I saw her little hand shake as she lifted the mug to her lips. She had developed some of the early symptoms of Parkinson’s in addition to her dementia. Medication would help but I did not tell her what I was thinking. Giving someone like Abigail a label with a name she might recognize, like Parkinson’s, can be more morale-sapping than helpful.

  I listened to Abigail’s stories for a while but gradually she slipped back into her own world and soon fell asleep. The pneumonia was almost cleared, her doctors told me. She should be able to go home soon. But home to what?

  I met some of her friends when they visited and was struck by their loyalty and sense of responsibility towards their cherished friend. For a woman of such senior years she was surrounded by a surprising number of friends, many of whom were many years younger than her. Before her decline in the year or so before she was hospitalized, they got in the habit of calling in to keep her company. They would bring her food on the pretext that they had cooked too much for their own families. Occasionally they would bring her out to a fancy restaurant, and Abigail would always insist on paying her own way. She was a woman of significant means whose husband had died when they were in their fifties, so Abigail had been living on her own for nearly forty years and was fiercely independent.

  One woman showed me photographs of Abigail as a younger woman. Those old grey tresses had once been blonde and Abigail was strikingly beautiful. She had lived a glamorous life and had travelled extensively both before and after her husband’s death. She knew many famous people, and her friends told me of the many wonderful evenings that she had enjoyed partying in high society. Her stories of Abigail’s life among the great and the good were enchanting, and it was heart-warming to hear of the fun they had all had together.

  ‘Oh my God, did she like to party,’ her friend laughed. ‘Abigail was one of those girls who never wanted to go home.’

  We could organize home help and her friends could arrange a rota to call on her, but Abigail required around-the-clock care. She would need to be transferred to a suitable nursing home – exactly what she had resisted for so long.

  It was tragic to see this faded beauty, so vivacious throughout her long and fun-filled life, now lying child-like in a geriatric ward, dependent on people to feed and wash her. Was this why we kept people alive? Is this not exactly what I would hate for myself?

  I have to admit I can get frustrated and even angry when I see people like Abigail. Doctors are accused of ‘playing God’ and yet, if that were the case, what would such a God deem to be kind? It seems cruel to me to keep people alive just because we can. I am not advocating euthanasia, of course, but sometimes it just seems unfair to put old, sick people through even more suffering and indignities.

  I asked her friend what she thought and she said, ‘The Abigail I knew would have hated this. At least she seems unaware of the world around her, which is a blessing, I suppose.’

  I asked why she thought Geoffrey was so against putting a DNR order in place.

  ‘Guilt,’ she said. ‘They never got along that well, and now he is probably trying to make amends.’

  I felt sorry for Geoffrey now too. He was facing the death of his mother with so much unresolved, and yet whatever he might say to her now would fall on deaf ears. He could not fix whatever damage had been done, and now he was facing the rest of his life wondering where their relationship had gone wrong. It was a heavy burden to bear.

  Whatever God there might be intervened a few weeks later. We were trying to arrange a nursing home for Abigail, but this can take weeks or months, so she remained on the geriatric ward oblivious to the rotation of fellow patients around her. Her friend visited her one Saturday afternoon and brought her into town.

  ‘She seemed as well as I had seen her in months,’ she told me later. ‘We had a great day, although I am not sure how much she was able to take in.’

  That Saturday night, at about midnight, Abigail stopped breathing. The nurses called the arrest team who arrived en masse and did their best to restore her to life. They were unsuccessful and I only hope Abigail was dead long enough before the team arrived to not care any longer.

  Conclusion

  One of the most brilliant things about neurology and studying the brain and its dysfunction is that you learn at least one new thing about it every day. Every week at our radiology meeting I wi
ll, without fail, see something new on a brain scan or hear a suggested diagnosis from a colleague that I either did not think of or had not seen before. Or I might learn a new technique for taking pictures of the brain or a new way of approaching a patient’s problem.

  The flip side of knowing a little more with each passing year, and meeting thousands of patients, is that you understand just how unclear things relating to the brain can be. Yes, I recognize most patterns of most neurological ailments at this stage, but as soon as I think I have a pattern locked down, I get caught out. And if I’m still seeing the occasional rare case for the first time, and learning something new every day, that is something I did not know the week or the month or the year before. That means the next question you have to ask yourself is, ‘Could I have missed something?’

  So the older you get the more the false confidence of youth dissipates and you start to realize how much you do not know. That is not to say I do not know what I am doing – I certainly believe I do – but it is truly astonishing, after twenty-five years in the job, to contemplate the breadth and depth of what there is to know, and what is yet to be discovered, about the brain. I fear we will never know all that there is to know about the brain and, in part, that is why studying neurology remains so exciting.

  As doctors become more specialized, we know more and more about less and less of the mountains of information we learned years ago in medical school. It is almost impossible to keep up with developments in one’s own area, let alone in those of others. So it is understandable that when a doctor sends you to a specialist that their line of thinking – and thus of diagnosis – will lean towards their own area of expertise. In other words, surgeons perform surgery, so that’s likely to be what they will have to offer. Analogous to that, my colleagues would be quick to say, is the old joke about neurology …

  ‘What do you expect when you go to see a neurologist?’

  ‘Nothing!’

  (I hope by now you’ll realize that the stereotype is a little unfair.)

  I often reflect on what it is we are trying to achieve as doctors. First, we want to save lives that are in immediate danger. When that happens, we are exultant – for a very short while. Then we try to return the sick to health. When that happens we are pleased. But when someone appears to have recovered physically from a neurological condition we are much more limited in our power to return them fully to their pre-patient lives. We can only do so much when someone is ready to return to full health, which can be a long process. That depends on the individual, their friends and families, and on their reactions to the illness. We can assist with physiotherapy and rehabilitation, and psychological support to a degree, but this is hugely limited by clinics so busy that when someone leaves our care we have to focus on the next, and possibly sicker, person. We want to let them go, but sometimes they are fearful and don’t want us to. Is that a success? I’m not so sure.

  When I sat down to write this book I had not planned to talk about my father or his career. But the more I thought about my life as a doctor, the more intensely I felt his influence, perhaps because I am now of an age to put myself in his shoes. I am certainly able to appreciate how patient and supportive he was when I was setting out as a callow young medical student. I may not have his endless patience, but I learned from him the importance of kindness and courtesy and listening to people, and I hope I bring some of that into my own work. It is something I aspire to do every day.

  One thing that has changed for the better since my father’s time is the relationship between older and younger doctors. When I regularly catch myself laughing with medical students and younger doctors now, I feel the emotional-intelligence gap has narrowed considerably between my generation and the ones behind me. In my early years as a consultant we would socialize with the younger crowd and it was always great fun. (It happens less now as I get older, simply because I cannot keep up!) The barriers that I perceived were there between my generation and my father’s generation might not have been there at all, but it was certainly not common for myself, or my peers, to chat so candidly or to socialize at all with our seniors when we were in training. Because all that has changed, thankfully, and also because I teach students and young doctors, I think I have a good sense of how life is for the up-and-coming generations of doctors. I am aware of their nervousness, and their bravado, at times. But I love to see the pride in young doctors’ faces when they get excited about their work.

  I tell students and junior doctors today to try not to be in the same sort of hurry as I was – it is a life-long career with so much to learn along the way. From my class in college, we all appear to be relatively happy to have chosen medicine as a career, which is pretty remarkable considering that most of us started medical school in our late teens. Was it luck or down to perseverance that it worked out for us? Or is it a sense of ‘we have come this far and we cannot do anything else’? I am sure that, like myself, former classmates have had periods of self-doubt. It is one of the few remaining ‘jobs for life’, and if you do not like it, or it does not turn out to suit you, you only find out after six years in college and at least a few years as a junior doctor. In other words, most people do not truly know if they are happy to continue as a doctor until they are at least in their late twenties, by which time a change of career seems terribly daunting.

  I recall my father feeling a slight sense of distance from the community and how he talked about the image of doctors when he was coming into the profession – they were seen then as aloof and serious types, a bit unapproachable. I believe that this is much less often the case today, and that the fact we are as subject to the highs and lows of life as the next person is evident to most people.

  I wonder what my father would make of how we do medicine now. I certainly think he would have his hands full with increasing bureaucracy and the expectation of constant availability. The opportunity to switch off has practically disappeared in the era of emails and text messages. It is also an ethical minefield. For instance, if someone sends you an email with scan results after hours on a Friday, they feel they have passed on the information and the proverbial ball is now in your court.

  What can you do about it on a Friday night? Call a patient with bad news but no solution? Call them, frighten the bejesus out of them, and send them in to sit on a trolley for the weekend ‘just in case’ something happens before Monday? Or hold the information in among your own anxieties until you can actually do something helpful on Monday morning? Of course, if a scan indicates something critically amiss you are glad to have the information and to act straight away – it’s probably something you were chasing urgently anyway. It’s the emails or texts in the grey area that eat into your headspace at a time when you should be trying to let go of the stresses of work and renewing your energies. And that is vital for those of us who work with the ill and the dying on a daily basis – not just for our own well-being and the avoidance of burnout, but so we can do our best for our patients.

  It is in the nature of many medics to worry that they will get one of the conditions they have studied for years. For many neurologists this is always a deep-seated and heavily denied concern. When you’re tired and stressed and your eye muscles flicker (myokymia to the likes of me), you worry you’re getting MS. When the muscles of your calf flicker spontaneously, it’s motor neuron disease. When you are run down and your hand trembles as you pour your Sunday morning cup of tea, it’s inevitable your darker thoughts turn to Parkinson’s.

  When I tell stories about patients’ groundless worries and misguided internet safaris, it is not to criticize them but because I feel their anxiety so acutely. I can only imagine the fear that some people have coming to visit someone like me. I readily admit to a range of phobias of my own, and one that dates back to my teenage years is a trip to the dentist. I have had a kind, calm and competent dentist for the best part of my life. Despite his best efforts, I dread every visit. It’s not necessarily the pain, I’ve decided, but the vulnerability and
loss of control that are the root of my fears. When I am stressed I tend to get a pain in one of my back teeth. Convinced I am going to lose a tooth, I arrange to see my poor dentist, who almost invariably reassures me there is nothing to worry about, and the pain magically subsides thereafter. Even neurologists get psychosomatic symptoms.

  There is no one-size-fits-all when it comes to a medical condition. Many are reluctant to believe doctors when told that they have the mild end of the disease spectrum. A persistent cough could be due to a bad cold, the flu, pneumonia or lung cancer. How many of us think lung cancer after we google ‘persistent cough’ and how many of us are reassured that it is, in fact, merely a cold?

  Happily, the majority of patients coming to see me for the first time do not have anything serious and are quickly reassured, some more easily than others, but the end result for most is that their mild shaking hands wax and wane at times of stress but do not progress to anything serious. Their stories are no less interesting in terms of the psychology of the mind. They are just as worried as the person who does indeed end up with a serious diagnosis.

  One day the sky will fall in on each of us. I urge you to celebrate the fact when today is not that day. While I do not ascribe to ‘living every day as if it were your last’ – after all, most of us cannot throw in our jobs, spend our savings on a sun-soaked beach and take to the drink – many of the people I meet are spending their one turn on life’s merry-go-round obsessing about the potential illness that will stop the ride.

  As for those patients for whom the news is not so good, well, the curse of neurodegenerative disorders, particularly MS and Parkinson’s, is that neither the doctor nor the patient can be terribly confident in predicting how an individual will get on in the future. You can give statistics, but who knows where a given patient will lie on the statistical curve – the good side or the bad side of the average? Many people find the ‘not knowing’ tormenting in itself, while others try to get on with their lives with, say, an irritating tremor, not knowing whether it will later incapacitate them or not.