Everything That Makes Us Human

by Jay Jayamohan

  Four days in, Dad was unrecognizable from the man who’d physically threatened me. His shoulders were sagging, his hair unbrushed. He was a broken man. He felt he had let his family down. I could see it in his eyes.

  We had not just rushed in once the legal decision was made. We had left it in the background, an unspoken decision about the direction of travel. But this poor man was in probably the worst place anyone could be. About to lose a child. I see it all the time, but it never gets easier. It never stops piercing my attempts to protect myself from my work, like tiny little stab wounds that will no doubt eventually do me in. I am lain bare every time I have the conversation. In fact, I am not ashamed to say that I have wept while correcting this chapter, just remembering this man. Perhaps I am not the best person to do my job, I often think. But then again, where else would I be?

  We walked silently over to the PICU. Everyone was made comfortable. Then we disconnected the boy from his ventilator. His oxygen levels dropped. I could see it on the machine. I witnessed him not making any kind of struggle. Shortly afterwards, his heart flickered then stopped completely, joining his brain. He was dead. It was over.

  We did our best. All of us. Medical team and family. We all had that little ten-year-old’s best interests at heart. We just had different ways of going about it.

  CHAPTER EIGHTEEN

  IT’S YOUR DECISION

  For people of a certain generation, the idea of a consultant doing his ward rounds conjures up the memory of James Robertson Justice from the old Doctor in the House film and its many sequels. As Sir Lancelot Spratt, he’d burst through the ward doors, barking orders to the following phalanx of wide-eyed juniors, while the sisters and nurses would swoon at his every word and patients would react like Moses experiencing a visitation from God. Ah, those were the days.

  There are still people who bend the knee to anyone in authority, or at least to those wearing a lanyard. White coats, ties, sleeves with cufflinks – all gone. My parents’ generation is probably the last that unquestioningly revere every utterance from policemen, teachers, doctors and – at the uppermost of the food chain – the Royal Family. Kids today would rather trust Google than an adult with qualifications and a lifetime’s experience. Hell, they’d rather put their faith in Wikipedia. Even politicians have made careers out of poo-pooing ‘experts’ and the ‘establishment’. And that’s all going rather well …

  I think the Internet has provided a much-needed shake-up of the status quo, but like everything it can go too far. And, as with many modern innovations, they’re fine until they affect you negatively.

  Putting your trust in a doctor takes a special kind of faith. You have to believe to your bones that the person advising you not only knows what they’re talking about, but also has your best interests at heart. As far as being an expert is concerned, as a doctor you never stop learning – there are papers about new advancements being published all the time. Discussions with peers and keeping abreast of the subject can be a full-time job in itself and it’s plausible that the odd new wonder drug or technique could slip under the radar. I do my best. But if a colleague or even a patient can produce some evidence that I’m unaware of, I’ll take it on board. Read the paper, do a bit of digging, apply my own expertise. There’s no ego here. Or rather, there is an ego, but it would never be the reason that I didn’t do something.

  As far as having the patient’s best interests at heart is concerned, I would be distraught if anyone ever accused me of not putting their child first. Bearing in mind that my wife and I met in Glasgow before I began to specialize, she’s seen me progress and grow as a clinician. I can’t say she’s impressed by the baggage that accompanies it. Twenty years later, according to her, I’m indistinguishable from the job I do. In her opinion, being a paediatric neurosurgeon defines who you are as a person much more than other careers. Most people could switch jobs and remain exactly the same. Not so for my line of work, apparently. She says I am completely ‘The Job’. Everything – her, my children, my hobbies, my health – they all fit around the job.

  There’s no malice intended, and she is proud of the fact that I have so many other ‘kids’! However, she also worries about the toll it takes on me – I know that during the frequent debriefs we have, it can sometimes get too much for my little brain to cope with. While hearing all this doesn’t necessarily make me feel great as a father or indeed as a husband, it is probably true. But I’d say it’s because I’m a father that I am as obsessed as I am.

  The same thing goes through my mind every time I have a new case. What if it was one of my own children who needed treatment?

  I would definitely want a doctor who was prepared to drop everything if needed – even if it did mean occasionally letting down his loved ones back home. So that’s the guy I try to be.

  Regardless of the personal sacrifices we make, for a parent to trust me to do what I do requires an extraordinary leap of faith. I remember standing outside the operating theatre while my daughter had her tonsils out. I know the surgeon – a great lady, eminent in her field, more than capable of this routine procedure – but even so, handing your child over to someone who is going to take a scalpel, or worse, to her is a test of parenting.

  Of course, I have no real way of assessing whether I could do more. My own experience of being the father of a patient is limited. It’s one thing giving your precious bundle of joy to someone who says he can fix their broken leg. What must it feel like authorizing me to go to work, knowing I’m going to have to put my fingers in your child’s brain?

  There’s a huge difference between another sort of surgeon saying, ‘This is a routine operation. We do ten thousand of them with no problems at all’ and me popping the top of your child’s skull and admitting, ‘This is a major risk operation from which they may not recover or even survive. Consequences abound for personality, language, learning – in fact, everything that makes us human.’

  I’ve seen people have less faith in their own deities than they do in us at that moment, with their child’s life on the line. They want us to succeed so desperately that they’re prepared to throw their lot in with this person whom they’ve known for such a short time and give him carte blanche to do anything. Or so it usually goes …

  A young boy came in with a brain tumour. My colleague on duty was perfectly capable of making the diagnosis and leading the surgical response. However, once the MRI results were in, she asked me to come and help her discuss the permutations with the family. She hadn’t been a consultant in the department long, and we tend to do some of these lengthy cases as a gruesome twosome. It’s always good to have another pair of eyes in theatre.

  I was as upfront as ever with the family. ‘Your boy has a sizable tumour on the back of his brain. Further specialist scans will show us the extent and we need to check the spinal cord, but it is imperative we begin the process of tackling the tumour immediately.’

  ‘Will you be able to cut it out?’ Mum asked.

  ‘We will cut out what we can reach. There may be some parts that are too interwoven with crucial areas. To attempt to attack those could risk further damage.’

  ‘Can you fix him?’

  ‘I have to say, from the evidence of the MRIs it does not look promising just with surgery. We want to remove as much as we safely can, then let’s see what’s what. Then we can plan the next steps. But I can’t promise anything. This is a very dangerous procedure. We will be negotiating with the most sensitive area in the body. There is a small chance your son may not recover from the surgery itself, and may die as a result.’

  It’s no way to be talking about an eleven-year-old. No way to be speaking to a loving parent. But those were the facts. Sugar-coating them – or lying – would not prepare either parent or child for any future that awaited.

  The operation goes as well as can be expected. The music is loud, the stakes are high, the tension in the room is comfortably the right side of manageable. It drives us onwards to be better rather tha
n fearful. We’ve all been here before, performed the same operation hundreds of times on hundreds of unique brains. We need our wits about us, but I can’t see any obvious problems.

  Two hours later, we’ve managed to remove 90-something per cent of the tumour. It’s in a pot next to me, vile and selfish. The fact that the human body can generate such a thing to hurt itself is one of life’s mysteries. The samples we sent to the pathology were looked at under the microscope. The results have come back almost diagnostic of a particular malignant tumour – something that would be confirmed in a few days. We begin the process of closing the wound. In my head I formulate my report to the mother.

  There have been no unforeseen hitches. No hiccoughs of any kind. We went in and achieved what we set out to. If the immediate high-resolution post-op scans come back clear, then perhaps, with radiology and chemotherapy, the boy has a shot at life. But they don’t.

  After three days, we finally received the pathology and the post-op images with the spinal views. It was terrible news. The tumour had been busy. Secondary malignant growths – ‘metastases’, as we call them – had spread all down the spine. Everywhere I looked was a new metastasis outcrop.

  The conversation I was about to have with Mum was also something I’d done hundreds of times. And, like the brain, they were all unique. I knew what I had to say, but I wouldn’t know how I was going to say it until I was face to face with the family. The words had to match the vibe. I couldn’t be responsible for adding to their pain any more than I needed to. A little boy had just undergone successful intensive surgery. The expectations for good news were immense.

  Mum got the first word in. ‘Did you do it? Did you cut it out?’

  ‘Yes,’ I replied, ‘but …’

  ‘So he’s okay?’

  ‘No, please, I have to tell you. While we did pretty well on the tumour, I’m afraid that’s just the start of his troubles. It’s spread throughout the spinal column. We’ve found multiple metastases.’

  ‘What does that mean?’

  ‘It means your son is going to need intensive follow-up treatment with chemotherapy and radiotherapy. But this puts him very much on the back foot already.’

  I paused. She processed.

  ‘Is there nothing … ?’ she said. ‘You can’t cut out these meta-things?’

  Performing life-saving or life-changing operations is the epitome of life as a paediatric neurosurgeon. It’s where we really come into our own. Save the life of a child? What greater gift can anyone offer the world?

  Yes, it takes training to dance among the brain cells; yes, it takes skill; yes, it takes a lifetime of servitude to the cause. But occasionally it can be the easy way out. The real test of being a good paediatric neurosurgeon is recognizing when operating is not the best option, and being willing and able to share the news, however discomforting it may be. It’s about treating the whole family as your patient and not just the unlucky one in the hospital bed.

  Let’s be blunt. The easy option in most scenarios for surgeons in full-time employment with the NHS is to do another operation. Why not? You’re paid to be there, it’s your job, it doesn’t cost you anything. You’ve got one tumour licked, but what about the metastases? Of course it’s tempting to say, ‘Let’s have another go.’ What have you got to lose? You’ll be the hero. You’re the guy battling ridiculous odds. You’re the guy who has done eight operations on this person’s child because you wanted to help. Aren’t you the guy? But are you helping? And who are you helping?

  I can understand how such selfless dedication to a lost cause could come across as a very self-affirming thing. A noble act. But actually, if the last six of those operations have been pointless, who are you doing them for? Are you performing them because you get kudos from it? I hope not. Is it so the parents can rest knowing they’ve exhausted all available avenues? Again, you probably shouldn’t. Or perhaps it’s because you haven’t got enough gumption to tell the family that this is the end of the line? You’ve got a child who has maybe six months left on the clock. Have you wasted three of them in painful and ultimately futile procedures? Are you putting your own fear of delivering the truth over the well-being of your innocent but distressed patient? Do that and you’re doing everyone a disservice.

  It’s a minefield. It shouldn’t but it probably does depend on where a surgeon is in his or her own personal career. I’ve made my share of egotistical mistakes. But you only do each of them once. And the results are there forever. Today is not a day for ego.

  ‘We’re going to offer chemotherapy and radiotherapy to remove the last part of the tumour that we left in the head and also the spinal tumours. This will be starting as soon as he’s regained his strength after the operation,’ I explained. ‘There is a small chance we can hold the metastases and treat them. But I can’t see us operating on any of them.’ It was Honesty 101.

  ‘You say a small chance. How small?’

  ‘The probability of your son surviving five years will be, even with maximum treatment, around ten per cent.’

  Numbers can be harsher to hear than words. The woman was broken. When we’d first spoken, I was preparing her for the fact that her son was about to undergo serious invasive brain surgery. My mission then had been to make her aware of the risks concomitant with such a procedure. Patients can and do die on the operating table. I hadn’t wanted there to be any surprises. But I hadn’t prepared her for this. Just as I wasn’t prepared for what she would say later.

  I’ve been around a while.

  Having these types of conversations is something that I’ve got a particular interest in doing, though not in a macabre way. I think that when you have people on whom you can’t operate, it’s actually where we as doctors, certainly as paediatric neurosurgeons, really come into our own. Of course, we can operate. But actually, it’s about making people understand when operating is not the best option.

  Imagine you’re a parent. You have two choices: watch your child undergo a series of unpleasant physical chemical treatments that may or may not extend life or go home and enjoy the quality time you have left together. The relative chances of success of proposed treatments are presented to them, based on previous results, but we can’t make any specific promises for their child.

  Make no bones about it. Chemotherapy and radiotherapy are bastards. They’re physically unpleasant. Hard labour for an adult, let alone an eleven-year-old. You can often come out feeling worse than when you went in. The logic is that it’s short-term pain for long-term gain. Fine in a lot of cases, but what if you don’t have a long term?

  I’m never going to be the person who pushes science for the sake of it or enforce a treatment because ‘it’s what we do’. I will offer it and you can take it and I’ll ensure it’s delivered to the highest of standards. But I’ll only insist upon it if there is a significant chance of long-term or high-quality survival. It doesn’t need to be both, but one should be an aim at least.

  What would be the benefit in this case? We are talking high-end tumour here. It’s never going to release its grip on its victim. Between treatments the lad might be walking and talking, yes; but he’d be exhausted, constantly knackered, with side effects such as changing blood counts and multiple infections, while the inside of a hospital becomes his second home.

  Would I push it for my own child? I can’t possibly decide without being in that position. What I can say is that the potential benefits are pretty questionable. Is it a price you really want your child to pay? I often have these difficult conversations with an oncology colleague – a cancer doc – who is one of the people who have to treat patients with these poisonous drugs. They are the next crucial set of personnel after the operation is over.

  And so what we say to parents is this: ‘We’ve given you the facts. We’ve pointed out the pros and cons. Your child is probably going to die at some point because of this tumour. Ultimately it comes down to this: what sort of quality of life would you like for him/her in the time you all have l
eft? It’s your decision and we will support you either way.’

  After the tears and the resentment and occasional outbursts of anger, the majority of parents concede defeat. Some of them choose treatment, some don’t. And, as good as my word, we don’t judge, we support. And then something like this comes along.

  It was the morning after the conversation from the night before.

  ‘Thank you so much for everything you’ve done,’ Mum said.

  ‘Have you decided what you’re going to do?’ I asked.

  It seemed that from her conversations with the nurses, she was opting for no treatment and quality of life, but I wanted to hear it from her, to make sure she understood the ramifications.

  ‘Yes, I’ve decided.’

  ‘You’re taking him home?’

  ‘No. I’m taking him to Germany.’

  You only have to flick through the ads in newspapers and magazines or type any ailment into a search engine and you’ll find someone offering a miracle cure:

  Losing your hair? Don’t pay for expensive shampoos. Send us cash to learn the secret of keeping your thatch.

  Got a loved one with Alzheimer’s? Our book has the secrets you need for a full recovery.

  Trouble in the bedroom? Send 50 bucks …

  There’s a fix for everything. We’ve all seen them. We’ve all probably ignored them or just laughed. So imagine how desperate you must be to not turn over the page one time, to not ignore their promoted adverts on your social media page. To look at those ludicrous words and say, ‘You know what, I’ve tried everything else. What if they’re right?’

  So now we were in an interesting situation. I was offering Mum and her son six months of time with their whole family, in their own home, making happy memories – or a couple of years of hardship and crying and illness. Maybe (probably not), but maybe he would beat the odds, but endure all the side effects of the treatment. What I didn’t seem to be offering was a lot of hope. Some parents need that more than anything else. And she’d found someone who was offering it in buckets.