How to make decisions about surgery
We make thousands of decisions per day, but what if the outcome was life-changing? Lucy Trevallion shares expert tips and speaks to Guy Heywood about his rapid surgery decision.
Guy was only 29 when he was diagnosed with a heart valve problem. He was fit and active, training as an amateur boxer alongside his job as a logistics manager, when he started to feel exhausted and get occasional chest pains.
Unbeknown to Guy, his aortic valve had two flaps (leaflets) instead of the normal three. This doesn’t always cause problems, but in his case the valve wasn’t working properly, putting strain on his heart. His heart valve needed to be replaced quickly.
For Guy, one of the hardest aspects was making a decision about his treatment. Agreeing to have open heart surgery was relatively simple as he was told he risked sudden death without it, but he then had to choose between a mechanical and a tissue valve.
There was no right or wrong... It was all about what life would be like
The mechanical valve would last longer but require him to take warfarin (an anticoagulant) for the rest of his life. An animal tissue valve does not require lifelong medication, but must be replaced (typically after five to 15 years). The choice is one many people who need valve surgery must make.
“The reason why it was so hard was because you wouldn’t know until after surgery if you’d made a good decision,” Guy says. “There was no right or wrong, they both had their pluses and minuses and it was all about what life would be like.”
It’s normal to feel overwhelmed or confused when facing a big decision like this, Hilary Bekker, Professor of Medical Decision Making at Leeds University, explains. “The brain is incredibly clever and chooses what information we attend to,” she says, “and then responds to a feeling, and often chooses for us without us even being conscious of it.
“When we make a decision consciously, we have to break down and try to understand all those automatic influences on us. So when we’re put in a situation where we’re suddenly being told we need to make a decision, we think we can’t do it, but we all have the capacity to.”
What you need to understand
Professor Bekker says that there are five things you need to understand to be confident you have adequate information about your condition. These are:
- The name of your condition.
- The symptoms and causes.
- How long it will last.
- The consequences of having it.
- Whether it can be cured or managed.
You can then look at the treatment options and understand the decision you’re making. It can be useful to put this knowledge in the context of your lifestyle. For example, ‘Will I need to cut down my hours at work?’ or ‘Will I need to be more physically active?’
Guy was given a lot of written information to take away, as well as the number for an on-call nurse. He tried to use internet forums to help him understand the situation better, but realised he had a lot of questions, so made an appointment to visit his surgical team.
Guy is a keen snowboarder
Who to involve in your decision
For Guy, telling his family about the surgery was a difficult experience, but also a huge relief. David Spiegelhalter, Professor of the Public Understanding of Risk at the University of Cambridge, says: “It’s very good to discuss your options with family, because they have to deal with the consequences of your actions, unlike internet sites and people you don’t know very well.”
It’s hard to communicate with people if they’re not being as open as you are
However, Guy found that it can be difficult to get frank opinions from loved ones. “At times it was frustrating,” he says. “Sometimes I felt like I was speaking to a shadow of somebody I knew, because I knew they weren’t being truthful with me. And it’s quite hard to communicate with people if they’re not being as open as you are and you don’t understand why.” Guy says his family didn’t want to impose their opinions on him and be responsible for the choice he made. He reflects: “It just made me know that ultimately I had to decide for myself.”
Guy was able to discuss his options in detail with one of his doctors. There is some debate about whether healthcare professionals should give patients a personal opinion in situations like this, but Professor Spiegelhalter argues: “It’s everyone’s right to come back and say ‘What do you think I should do?’ and to get an honest answer.”
Guy found that talking honestly with the doctor was “invaluable” and helped him come to terms with the situation. When he asked the doctor what he would do in his place, he said that because he was young, he’d have the mechanical valve to avoid having to go through the process again.
Guy skydiving in Dubai after his heart valve replacement
Making a final decision
Writing a list of pros and cons can add structure to your decision-making process, suggests Professor Bekker. She recommends you look at the list and ask yourself: ‘What is important to my life at this time and what are the trade-offs?’
“Our values change over time and what is important to us now may not be important to us later,” she says. “It’s a question of whether we want to adapt our lives. Ask yourself whether something, for example climbing, is important to your life or whether it’s just something you like doing at the moment.”
After weighing up the trade-offs, about two weeks before the operation Guy realised which way he wanted to go. “And that was it, I’d made my mind up,” he says.
It’s about personally how you look at life and what you want for the future
“I thought I could live a better quality of life on a tissue valve, though it might have a shorter life than a mechanical valve – which comes with its own restrictions. There is no right or wrong decision; it’s about personally how you look at life and what you want for the future.”
After his valve replacement, Guy has been living life to the full, going parachute jumping, snowboarding, travelling around Asia and spending quality time with his dog, Brave. However, he has had to undergo a heart valve replacement for a second time in December 2016, after developing endocarditis, which infected the valve. “Brave, our dog, is a great fellow and has helped me to smile and have fun so soon after my second surgery,” he says.
Guy faced the same dilemma a second time and chose a tissue valve again. He feels happy with his choice and believes he did everything he could to come to the right decision. For Guy, your right to choose is important – so much so that he’s set up a website and a Twitter account telling his story, both called Free to Choose.
Professor Spiegelhalter notes that all we can do is try to make the most informed decisions – predicting the future will never be possible. “Ultimately, none of us know what’s in store for us, or how long we will live,” he says. “Part of the joy of being human is not knowing – and being able to deal with that.”
If you’re presented with statistics, risks and survival rates, how do you make sense of them?
Professor Spiegelhalter says: “Numbers need to be treated with respect. They are not the first things you should be presented with after a diagnosis.” He advises that if anyone gives you statistics for, say, a survival rate for surgery, they should also explain whether it is on average or whether it has been adjusted for your age or general health. It can also be helpful to reframe the statistic – for example, a 10 per cent risk of death is also a 90 per cent chance of survival.
Heart surgery on average has a mortality risk of two per cent, which Professor Spiegelhalter says is about the same as 3,000 parachute jumps, or around 120,000 miles on a motorbike, although the risk will vary according to the procedure and the individual.