I always arrange a second opinion when it comes to motor neuron disease. There is always an outside possibility that we are wrong. It also gives people time to process what is happening, and to generate the myriad questions they will have but are too shell-shocked to ask when you tell them the grim news. I explained this to Anthony and his wife.
‘What’s the point?’ he asked. They packed up his belongings and said goodbye to his fellow ‘inmates’. He didn’t tell them his news, but I think they knew.
‘You lucky bastard,’ they joked. ‘We are still stuck here in Shawshank, and you get to go home.’ He laughed along with them and headed to the door.
I received a letter from the specialist motor neuron disease clinic a couple of months later. They could not find an alternative diagnosis for Anthony and confirmed our worst fears for him. In the meantime he had enrolled in a trial in the motor neuron clinic run by one of my colleagues with a new experimental therapy and had begun to raise funds for their research. Not everyone qualifies for such trials, and some studies that are ongoing are aimed at looking at tests that might improve our medical knowledge of the condition, but do not involve therapies. He was definitely ‘fighting this’, as he promised he would.
He came back to see me again just before Christmas of the same year. He was in a terrible state and now needed a wheelchair. His slurred speech was hard to make out and his wife acted as our interpreter most of the time. The box of tissues beside him attested to his inability to swallow his own saliva. He did not want to be resuscitated if he had a cardiac arrest, he said.
‘They have all suffered enough,’ he said, nodding towards his wife. ‘I don’t want them to go through any more pain.’ He was still only thinking of others, and it was incredibly heart-wrenching.
Living with a terminal neurological disease is harrowing for both patients and their families towards the end of life. There is no hiding from the slowing gait, deteriorating speech and loss of autonomy. It is awful to witness as a doctor, so I cannot imagine the toll it takes on a partner or children.
In addition, a diagnosis of motor neuron disease brings a lifetime of anxiety for the patient’s survivors: although MND is only rarely genetic, how can they not worry that they are going to meet the same fate if their hand is numb when they wake up, or if they drop a plate while serving dinner? The family history of illnesses is critical, not just for determining whether or not someone may have a predisposition to a certain disease, but also in working out what the patient is most concerned about – even if they do not admit to it.
‘Thanks for everything, Doc,’ Anthony said as he manoeuvred his electric wheelchair out of the clinic. ‘You did your best. I don’t envy you your job, though.’
‘Jesus’, I thought, ‘how can he possibly feel sorry for me?’
Anthony died in the hospice a month later surrounded by his family and many friends.
25
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A DAY IN THE LIFE
I thought the Sunday night ‘back to school feeling’ would get better with age, but apparently it doesn’t. In fact, I suspect it’s getting worse. I like to get in to work early so that I can get thirty minutes alone to deal with paperwork and email referrals. Then at eight on Monday morning the team meets to go over the x-rays and brain scans of the interesting and difficult cases of the previous week or those of patients due in later that week. There are about twenty of us in this meeting – neurology consultants and students as well as doctors from other departments. We share ideas and suggest treatment options so it is very useful as a teaching forum, and patients benefit hugely from multiple doctors viewing their images and coming up with the best options available for them. Straight afterwards we have a very brief roll-call meeting of the neurology team – as you rarely know which staff members are on leave of one type or another – and by the end of the meeting we have a picture of what is happening and who is assigned to do what for the week ahead.
After that, at about 8.45 a.m. I head to Casualty (now called the Emergency Department, or ED, but I still use the old-fashioned term). With the weekend backlog, the referrals from the department trolleys come in thick and fast on a Monday morning. The state of Casualty departments – particularly at the height of winter – is a running theme of media coverage of the health service. Sometimes what reporting of the ‘trolley crisis’ misses, I think, is the frenetic activity in our Casualty and Acute Medical Units that goes on all the time, including at weekends. I have to say, in hospitals’ defence, that the spirit of collegiality and mutual respect between doctors and nurses under extreme pressure, with the lives of so many people depending on them, is admirable. It can indeed be terribly tough for patients, but many will comment on how observing the events of a single night in one of our Casualties makes them appreciate their own lives so much more.
First, I see a 56-year-old woman with a three-stone weight loss in the previous three months. She was recently discharged from another hospital. At 4 a.m. her husband was woken by what he felt was her heavy breathing but decided it was nothing untoward and fell back asleep. By 6.30, she was unrousable, and by the time I saw her at 8.45 she was intubated and ventilated – being kept alive by artificial means. She had probably had a heart attack some hours before, and thus there was little hope of her making a meaningful neurological recovery. Her nicotine-stained hands were small and thin and there was wasting of the muscles. This suggested the possibility of an underlying cancer so it may have been better for her to have died peacefully at home in her bed.
From this resuscitation area, I go to the main Casualty, where people lie in various states of distress on trolleys. I see a sixty-year-old man with a possible stroke. His right arm is weak, he tells me, but when I examine him I cannot detect any deficit – the implication of there being no abnormal neurological signs is that he is another of the worried well. That said, to be certain, he still needs a CT brain scan. Fortunately for him, when the scan comes back it’s clear and he can go home.
Next is a 68-year-old woman with severe headaches. They are likely due to occipital neuralgia (a painful nerve condition affecting a specific area on the side of the scalp) and not as serious as she fears. Across the room, a 21-year-old girl has a weak left arm. Her first cousin has MS and, understandably, this is worrying her. Again, I feel she is one of the worried well, but sending her home without an MRI scan would be indefensible, so I have to admit her. The scan usually takes place after two to three days of hospitalization because of the long list of other people already waiting for similar scans. It could be done as an outpatient but the waiting times for an outpatient scan are too prohibitively long to take the chance. I understand why someone would rather wait for days in a hospital, with disturbed sleep and variable food, than go home still in limbo as to what is wrong with them. There is no doubt in my mind, however, that many would not need to stay in hospital if we had sufficient access to urgent scans – but that is another story.
I then telephone two GPs about letters they have sent me concerning shared patients. A quick phone call to a colleague can prevent someone having to come to Casualty but will never appear on the ‘metrics’ that assess what doctors do so regularly.
I visit a ninety-year-old patient of mine with Parkinson’s disease who fell at home and fractured his hip. He is in the geriatric ward. A courtesy call can mean so much that the extra time taken to reassure him that he is not alone or forgotten lifts both our spirits.
I move on to the Coronary Care Unit (CCU), where a 48-year-old Chinese man had been referred to me with new left arm and leg weakness (hemiparesis). ‘He is on methadone,’ whispers the CCU nurse. I ask her if the man under her care has any heart problems (he is, after all, in the CCU).
‘No, they suspect a stroke’, she says.
A young doctor in training beside her overhears and points out that the man’s ECG and blood tests indicate a recent heart attack. The nurse is unabashed and informs us that those findings could indeed be in keeping with a myocar
dial infarction (heart attack). In fact the man has had both a stroke and a heart attack around the same time. As we walk away the young doctor rolls her eyes.
So young and already so cynical! She will learn quickly enough, I hope, about the imperfections of our craft and how even experienced people, like the CCU nurse, can be thrown by someone turning up with two serious problems at the same time.
We make a treatment plan for the poor man and then set off for the Acute Medical Unit (AMU). This is a relatively new part of the hospital set-up and serves as a sort of step-down area from Casualty, where people get a proper bed, instead of a trolley, and are assessed by an expert team of medics to determine the tests and treatments they will need while in hospital. The AMU doctors tell us that there are no neurology referrals to be seen, as we had already seen the acute cases due their way earlier in Casualty. This is fairly unusual as most days we see people in both departments.
It’s about 11.30 now and I have coffee with colleagues before going to the ward where the neurology inpatients are based. We are about to go around and review all of our patients but, before we do, we go through each patient’s potential problems and make sure we are clear about our plans for treatments. The registrar has been with us a year and should know what is expected of him, but he does not seem to know much about any of the patients we are about to see. I am frustrated, as this is his main job, and I let him know that I am disappointed in how he has come on in the last twelve months. While he is a good guy, he has delusions of grandeur. Sensible junior doctors are aware of their limitations, and know that with a basic six-year medical degree they are very much still on the beginner slopes. But a minority – this registrar among their number – cannot resist trying to impress patients with an air of expertise and authority. I cannot bear young doctors pretending to patients that they are better than they are. Of course, my real frustration is at what I perceive to be a lack of curiosity about all things neurological. I speak to him bluntly and I see him become flushed. Almost immediately I am filled with remorse as I recall my own inadequacies at his age. I ask him to pop in to me later and I promise myself to make amends then.
For many years I would just grab a sandwich and eat at my desk around lunchtime. A recent development has been a much more sociable lunch with colleagues in the hospital canteen. A mixed group of old and young consultants, I now lie among the former but enjoy tremendously the company of both. It is great to chat through our mutual frustrations for half an hour each day, and we try to outdo one another about which of us has had the worst day so far. Regardless of speciality, the highs and lows are similar, so it is terrific to be reminded we are not alone.
After more phone calls to patients, relatives and GPs, dictation of letters and writing updated prescriptions to be sent out to patients, I start the most difficult clinic of the week: outpatients.
First, I see a 43-year-old dentist with mild and well-controlled (by medication) epilepsy, and then a seventy-year-old woman with Parkinson’s disease, followed by a 63-year-old man with the same condition. All three patients are relatively well but a five-minute reassurance consultation is impossible as each is dealing with the emotional, more than the physical, consequences of the disease labels they are stuck with for the rest of their lives.
The fourth patient is an 81-year-old man with very mild Parkinson’s. Again, the ‘label’ of Parkinson’s seems to have caused more illness than the mild tremor he actually has. A long conversation ensues and, although in truth I make no changes to his medication, with reassurance he seems less tremulous leaving than when he arrived.
Next is a 58-year-old woman who is on a blood thinner (warfarin) to prevent strokes. She has a rare condition called anti-phospholipid syndrome that can damage the blood vessels throughout the body, but she is also very well, thankfully. She’s a very kind woman and it’s cheering to have an upbeat conversation with a patient for the first time that day. We discuss her hobbies, she recommends some of her favourite books, and I am intrigued, as always, by how some people wear their disease labels with such equanimity while others fall apart.
I then call in a young Korean woman who has headaches. Her English isn’t great, but she’s very affable, and together we work out, over the course of half an hour, that she has migraine. Another half an hour is spent diagnosing a thirty-year-old Iron Man participant with MS. His father is a patient of mine and has had the same condition for over thirty years. The son’s only symptom was a heavy left leg and this would develop after he ran five miles. A lengthy discussion followed about Uhthoff’s phenomenon to explain his symptoms: his body appears fine when not stressed but when its temperature rises with exercise, the vulnerable parts of the nerves are exposed. The insulation – or myelin sheaths – surrounding the nerves is damaged by MS, and so conduction along the nerves to his legs is slowed by the heat generated by his running to the point that he can hardly walk at all after the sixth mile. I try to explain things without jargon, but fatigue is starting to set in. Mine isn’t a long day to many people, but huge concentration is required for every consultation, and meetings with patients and their families can be emotionally fraught and take their toll.
A 29-year-old speech therapist is next and both of her parents – but, perhaps notably, not her fiancé – ask a litany of questions. She has had very mild MS for over four years and did not get on well with her previous neurologists. When seeking a second opinion, such patients are usually extremely well informed about their condition and treatment options but on this occasion it’s as if I am telling them all about MS for the first time. Forty-five minutes passes very slowly indeed. I realize I have assumed too much at the start of the consultation and spoke about MS as if they all knew a lot about the condition. So I find myself going back to the very basics. I have learned yet another lesson about taking for granted what someone does or does not know about their illness.
The final patient in the clinic is a 62-year-old schoolteacher who a year before developed a twitch in his left eye when out in the playground at lunchtime. He went to an optician who terrified him by suggesting he might have a brain tumour. Like his GP, I feel this poor man has ocular migraine. A long discussion follows as he wishes to understand the mechanism of migraine at a cellular level. I don’t think he is particularly satisfied with my attempts to explain it to him. I am not sure I am particularly satisfied with my efforts either.
When I finish the clinic I call the neurology registrar to check on any patients who have been referred from Casualty or the AMU while I was seeing the outpatients. There is a young woman on a trolley who the registrar is worried might have had a stroke. ‘She is right-handed, dysphasic and unable to move her left side,’ he explains authoritatively. A right-handed person nearly always has their speech centre on the left side of the brain. Thus, if they have difficulty speaking (are dysphasic), a stroke would affect the left side of their brain. If you have a stroke in the left side of your brain, the right side of your body will be weak. What the doctor has described does not fit with the known circuitry.
I am taken aback that I have to explain to the registrar the basics of right-handed people being left-cerebral-hemisphere-dominant, and thus he is presenting me with a neurological near impossibility. Maybe our earlier encounter has made him nervous and he has got flustered and muddled some of the rudimentary principles of neurology. When we meet later I will have to make an effort to get the feedback right. Giving feedback well is something of a challenge for me – if I could apply the same care to communicating with junior doctors as I do to communicating with patients, I’d be better at it. But when mental reserves are low, diplomacy can suffer. The registrar needs to be on top of the basics, and he needs to be robust enough not to crumble when mistakes or shortcomings are pointed out. But I need to figure out how to build his confidence and bring out the best in him.
Another elderly man has been referred by another medical team with possible early Parkinson’s disease, but a quick overview of the correct medical hist
ory revealed this too is an impossibility. The younger doctors are just not bothering any more, I feel, knowing a senior neurologist will see the patient quickly regardless. It’s late in the afternoon and I’m obviously running low on patience.
I check in with the neurology ward sister and as we chat I am gratified to see a 29-year-old woman with cerebral venous thrombosis, who was drowsy and vomiting the week before, now talking normally with her relieved fiancé. She had suffered a clot in the veins of the brain, like those you see in the legs of some people after long-haul flights, associated with taking the contraceptive pill. He recognizes me but she, of course, does not. We share a wry smile at her loss of recall of all the life-threatening events of the previous week.
Back at my desk, I start to do some paperwork. The registrar knocks on the door tentatively and comes in for a chat. He expresses his frustrations at my high expectations of him. I tell him – and I believe – that he is right and I was wrong earlier: I was expecting too much. I apologize and try to be as encouraging as I can about the things he is doing right. (Things improve considerably in the subsequent months.)
I finish my paperwork and clear the post for the day. I finally get home and am relieved to at last have some time alone. I don’t know how other doctors come back to chaotic families, children and mealtimes. I need time alone to decompress. I still have to get some food, but rarely feel hungry after such an intensely draining day as the knot in my stomach can sometimes take a few hours to untangle. I write my diary for the following day, plan my meetings for the morning and drink a glass of wine. I am done.
At 4 a.m., I wake spontaneously and for no apparent reason. The patients of the previous day turn over in my mind and I wonder whether the woman, who twenty-four hours before had woken her husband with her heavy breathing pattern, is still alive now. She wasn’t that much older than me and in a few months she had travelled from the land of the well to the threshold of the great abyss.
Just One More Question Page 16
