Lessons From a Near Death Experience – a Year On

Apologies for a more personal piece – we’ll be back to the politics and international relations soon (and there is a bit of policy in this one at the end I promise). But this week is a big anniversary for me. It will be a year since I went into hospital for a serious, but routine, operation and ended up a few hours, and a brilliant surgery team, away from dying.  A year on feels like a good moment to look back and think about what I learned from the experience and how it changed me (and didn’t).

I wrote about the experience itself last year, in the Sunday Times. But as the piece is paywalled here’s the quick version of what happened, with a few quotes from that article.

I went into hospital on the 29th March 2021 for an operation to remove my large bowel, following decades of suffering with Crohn’s Disease. I’d left it far too long and the procedure was very difficult as a result. Somehow during the operation they accidentally made a small hole in my stomach and sewed me up without spotting it. Over the next few days I got increasingly ill as food and drink leaked out and I developed acute peritonitis:

“By Wednesday evening my lungs had started to collapse due to the pressure put on them by my abdomen and I needed an oxygen supply to breathe. Early on Thursday morning I was rushed by ambulance to the nearby Northwick Park Hospital. The intention was to keep monitoring me, but things were going downhill so rapidly that they took me straight into the operating theatre. I was still messaging my wife from the ambulance so she could help me understand what was going on. My last text says, “Am I in serious danger?”, to which she replied “No.” Later she told me this was the only time she’d lied to me through the whole experience.”

Luckily for me the surgeons found the hole and fixed it but I was so weak by this point that they had to put me into a coma. The next day my temperature was still going up and it was very touch and go, but I pulled through and they woke me on Saturday afternoon.

I spent the next three days in ICU, extremely disoriented and hallucinating wildly. My stomach refused to start working again and I had an evening thinking I’d need a third op, and that it would almost certainly kill me:

“This was the darkest moment for me….Surprisingly, I wasn’t scared of dying itself, which I’d always assumed I would be. But I was deeply upset about everything I was going to miss out on. I kept seeing my kids’ faces and thinking of everything I was going to miss — their graduations, their weddings — and seeing the people they’d turn out to become. I thought about all the tribulations of growing up I wasn’t going to be able to help them through. I thought about my wife and all the trips we’d planned together. I thought of the piles of books in my room I’d never read and the books I wanted to write. The sense of regret was overpowering. It was then that an amazing nurse called Caroline spotted how distressed I was and came to sit with me, despite the ICU being manically busy. She spent an hour calming me down and managed to get my wife on a video call even though it was 11.30 at night. I will be forever grateful to her.”

Ultimately the doctors managed the problem without the need for further surgery and a few days later I was able to move to a ward. By this point I was a real mess. My weight was down to seven and half stones; I kept getting abscesses all over the place due to the trauma my insides had been through. I was stuck in hospital for another three weeks getting increasingly frustrated and unable to see my family because of covid rules. I spent my time watching box sets and thinking about NHS productivity (more on that later).

Eventually I discharged myself with the help of a lovely Australian doctor who agreed to a bespoke process that allowed me to leave with various tubes still attached to me. The initial period at home was bumpy. I quit my job as I needed a few months to recover, and it involved a lot of travel which I didn’t think was a good idea given my condition. It took a long time before I could go for a walk without stopping every few seconds to catch my breath, and to start putting weight back on. But I did recover and, thanks to the generosity of my employer, Ark, was able to stay with them as a part-time adviser.

I’m now healthier than I’ve ever been; back at the right weight and able to work full time. The main long term effect seems to have been on my drinking/eating habits. I need to drink constantly to avoid dehydration. And whereas before I had a very sweet tooth now I crave salt all the time as much of it is absorbed in the large bowel. Less explicably I’ve also developed a love of pickles and tomato juice. It’s like being permanently pregnant.

Beyond my shopping list, it’s changed my life in all sorts of ways, probably more than anything else that’s happened to me, at least since we had children. And I have reflected a lot on what it’s taught me about my own psychology and how it illustrates various psychological traps many of us fall into.  

The anticipation trap

I left the operation too long for a number of reasons but the main one was I couldn’t face the idea of having a stoma. The kind I’ve had is irreversible, a profound and permanent physical change that I found terrifying. Having a bag attached to me for the rest of my life just felt like an overwhelmingly awful prospect I wanted to block out of my mind. So I ignored the pain and was only forced into action when the doctors told me I had a high risk of developing bowel cancer.

I knew that others who had stomas typically said it had made far less difference to their life than expected. I even knew the research on so called “affective forecasting” that shows people’s expectations of how negatively they will be affected by events like surgery are often far worse than the reality. Rationally I would tell myself this would be true for me too. I’m fascinated by cognitive biases and this was one I could easily identify. And yet I still couldn’t break free of it. I still couldn’t quite believe it wouldn’t be as bad as I feared.

And you know what? It’s been nowhere near as bad as I feared. It doesn’t hurt; it doesn’t smell; it’s not visible; it doesn’t stop me doing anything I did before. It takes five minutes to change every few days. It took a few months and some unpleasant situations to get used to it. But I barely notice it now.

The corollary is that the lack of chronic pain, for the first time in my life, isn’t noticeable either. You’d have thought it should be an amazing relief, but you don’t notice an absence. It’s obviously much better for me not to be in pain, and if I got it back (which is always possible with Crohn’s) I’d be upset. But as all the research on our ability to forecast our own future emotions says, we all tend to have a baseline level of happiness (or unhappiness) that we return to following the kinds of major events that we anticipate would have a dramatic and permanent impact on our wellbeing. Daniel Gilbert calls this our “psychological immune system”.  

I’m probably not going to be able to convince anybody else, given I wasn’t convinced by case studies. If there is, though, anyone out there who is putting off a needed operation because of that negative anticipation trap, please learn from me and don’t. It almost killed me.

Being pushed off the cliff

The really major change in my life has come from the enforced career change. For my entire working life I’d been managing people, taking on increasingly senior roles. I enjoyed all my jobs, including my last one;  I believed in what we trying to do and liked my colleagues a lot. But I’d been doing difficult executive jobs for such a long time I’d stopped recognising how much effect the stress was having on me

When I went into hospital I had no intention of leaving my job but, after things went wrong, and I lay there feeling sorry for myself, I realised I was probably going to have to quit. Which meant I started thinking about what I might do instead without any plan in mind; the first time I’d really ever allowed myself to think about that, rather than just jump from one job to the next. And it occurred to me that what I really wanted to do is write, and while I might not be able to make it work financially, this was at least an opportunity to give it a go. I also realised that it was the thought of my kids who’d got me through the worst post-op days but that I’d barely seen them during the working week since they were born.

Ark agreeing to keep me on as a part-time adviser made the transition financially plausible but I was still nervous about the drop in income; and the uncertainty. One thing I clocked quickly is that I didn’t need as much income if I wasn’t doing an office job. For a start being around a lot more meant we no longer needed extra childcare. But I was also lucky in that a few organisations saw me tweet about how I’d left my job and offered me projects; and I got commissioned to write for a few publications. Then at the start of this year I started this substack with Dad, allowing me to write more broadly about whatever I wanted without the need for commissions.

I’m not pushing some “follow your dreams” pablum here. I had almost twenty years of experience in senior education roles and a lot of professional contacts, plus a big twitter following. I appreciate I was in an unusually strong position to make this shift. But even though I can see this is true in retrospect, I’d still never have done it if the operation hadn’t pushed me off the cliff and forced me to try. Our fundamental risk aversion is one of the core tenets of behaviour psychology and it had stopped me even considering a career change that has (so far anyway) resulted in an enjoyable and less stressful work and home life.

In dismissing the idea, prior to the op, I’d overweighted the importance to me of earning more money than I need, and, even more so, status. I’d always felt, on some level, that I needed to be a CEO or an Executive Director in order for people to think I was worth talking to. But then that’s not why I value people, so why should it be so for anyone else? And I’d underweighted the importance of doing something I really enjoy, as well as being more involved in family life (there’s no way to not make this sound twee but it’s true). I’m even learning how to cook and have advanced from appalling to merely mediocre.

So while I’m not advancing a simple “follow your dreams” - everyone’s context is different – I am, at least, recommending peering over the edge of cliff and seeing if the landing might actually be pretty soft, rather than waiting for some external factor to push you over the edge.

Understanding the NHS

The final lesson is a policy one rather than a personal one (see I promised there’d be some). During my weeks on the ward, feeling increasingly lucid, I spent a lot of time wondering about NHS productivity:

“One obvious issue was the bizarre inconsistency between generous spending on medical procedures and tests — for instance, I had more than £2,000 worth of precautionary blood transfusions — and penny-pinching on low-cost items. The most absurd example was when I was refused an extra pot of tuna mayo with a jacket potato, despite having lost an alarming amount of weight. More seriously, there weren’t enough IV stands on the ward, meaning drips had to be attached to my bed, preventing me from moving around. And there were nowhere near enough chargers for all the monitoring machines, which meant there was a constant cacophony of beeping across the ward and nurses spent hours a day searching for and swapping chargers around. One day I did a back-of-an-envelope calculation that showed the cost of time spent searching for chargers during a single shift was greater than the cost of a new charger…

…Perhaps the biggest issue of all is that communication between teams is hamstrung by most things still being done on paper, which meant notes regularly going astray as I moved around parts of the hospital for tests. And when things are done electronically it’s through creakily slow, antiquated IT systems that cause delays and confusion. Another day I spent some time sitting across from a doctor trying to book various tests; it took her hours to do something that a decent bit of software could have done in minutes.”

As a result of writing the piece I was put in touch, via a circuitous route, with the leadership of the hospital Trust where I’d had the operation, and am now a patient rep on their transformation and strategy projects. This is a recent development but I’ve already gained an insight into how the NHS works that no amount of research papers would have given me. For a start you only get a sense of how massive these Trusts are, and how complex their management, from the inside. My one is not the biggest by any means but still has 8,000 staff and a budget that would make them a FTSE 350 company if private. It’s on a different scale to even the larger School Trusts.

From my limited interactions so far I’ve learned two things. First a lot of issues are caused by how hard it is to change staff behaviour rather than formal processes. This is true in schools too and, I expect, in most institutions, but it seems particularly tricky in the NHS due to sheer complexity and size, as well as the split between clinical and management staff. For instance, it turns out that the lead nurse on my ward could have bought more drip stands and other equipment pretty easily, there was no ban, it wasn’t penny-pinching. But because they had been through a period of austerity fairly recently, after the Trust went into debt, they had learned not to, and this was proving hard to undo.

The second is that the political/media obsession with cutting administrative costs to ensure money is spent on the “front line” is even more ridiculous that I’d realised. Clinical staff are hamstrung by a lack of administrative capacity that forces them to spend time on tasks well below their pay grade. The NHS spends less than half the OECD average on administration (as a proportion of total spend); a third of that in France and less than a fifth of the US (which is, to be fair, incredibly inefficient). From what I’ve seen so far, the kind of improvements necessary to manage the huge post-covid waiting lists, can only come from management and clinical staff working together to develop better processes, understand their data, and focus on opportunities for behaviour change. Any politician or newspaper demanding we cut management to fund “the front line” just isn’t being serious.

Over the next year I’m hoping to learn much more, and am particularly keen to help on a project the Trust will be running on discharging patients. Though I will obviously have to respect confidentially I will try to write more about the NHS from this perspective when I can.

Get in touch

A final point. One nice thing that’s happened over the last year is that a number of people who have stomas, or were about to have a similar operation, have got in touch to say that me writing about my experience had helped them realise they weren’t alone. So if there is anyone reading this who wants to talk to someone who’s been through it, please do get in touch. There’s no doubt there’s still a stigma about it, despite well over 100k people in the UK alone having a stoma. I’m hoping talking about it can help reduce that a little.