‘I met a Geordie medical student on my first day at medical school,’ explains Kathryn Mannix from her home in Northumberland. That medical student went on to be her husband. ‘That was probably the anchor for staying here,’ says Kathryn, who is originally from Merseyside. ‘I stayed in the North East because it’s a wonderful place to live and the people are so fantastic. We’re very similar populations of people, Geordies and people from Merseyside. We’re kind and look after each other.’
Looking after each other was another key tenet of Kathryn’s life: she graduated from the Medical School, where she saw her first body, into Newcastle’s bustling hospitals. She worked in various areas, including an adult haematology department and the oncology ward, before realising that she was less interested in a patient’s vital signs and more interested in the people behind the notes. She was also interested in ensuring that, when these people died – as we all eventually do – that they were treated with respect and care, and with the minimal amount of suffering. In short, she realised she wanted to be in palliative care.
The problem was that palliative care didn’t really exist in 1986. ‘The Association for Palliative Medicine for Britain and Ireland started around then, and I was a founding member of it,’ Kathryn recalls. ‘I was working in it before it was even invented.’
She also led Newcastle’s NHS Palliative Care Services, and spent large parts of her career considering what happens near the end of a patient’s life. She made it her mission to change the conversation around death. ‘I’m trying to recapture the public understanding of dying from the kind of distorted picture people get now that they don’t see at home because it’s been transplanted into hospital,’ she explains. ‘It’s not like what you see on Eastenders, and it’s not the terrible, very sad, difficult deaths that get into the newspapers.’ Rather, says Kathryn, ‘it’s much, much more gentle than that.’
But thanks to the great leaps forward in medical science – better public health campaigns, widespread immunisation, increased knowledge of preventative medicine, antibiotics and cancer treatments – we’re become inured to death. Nothing’s gone wrong; in fact, Kathryn says, ‘We’re probably victims of lots of things going right.’ But it does mean that while a woman of her age 100 years ago would have seen many deaths at home and know the patterns of progression as someone reached their final days and hours, people today have very little knowledge of (and very little appetite to talk about) death. ‘We’re forgetting to have the conversation about at what point we are prolonging dying instead of enhancing living,’ says Kathryn.
Working on the front lines of the NHS, she’s seen that first-hand more times than she would care to remember. ‘Because we don’t see normal dying anymore, we end up having to have very intense conversations with families about what the patient would want when they die,’ Kathryn says.
‘What I want is for people to realise that dying is the normal end of everyone’s life. The process of dying isn’t painful or comfortable – it’s very gentle,’ she says.
That’s the overarching argument in Kathryn’s groundbreaking book, With the End in Mind. The book, which tells the story of 30-odd patients she has treated throughout her career at the end of their lives, aims to spark a conversation that will improve end of life care. ‘It’s fabulous to be able to have this opportunity to give what I think of as good news: that dying isn’t as bad as you probably think it is, and is an awful lot better if you approach it without feeling terrified,’ she says.
The book came about after Kathryn retired from the front lines of the NHS – ‘knowing there were enough people to do the day job, and feeling able to think about campaigning for better public understanding of dying,’ she explains.
‘We need to talk about dying, to understand the process, to stop expecting miracles in illnesses that just aren’t going to be turned around,’ she continues. ‘We need to stop people dying in ambulances and emergency care units surrounded by bleeping machines when they could be comfortable at home in their own beds, with people they love.’
She was making those same arguments on a BBC Radio 4 programme called One to One when she was heard by a literary agent who approached her.
‘He asked: “Have you ever thought about writing a book?”’, recalls Kathryn. She had, but thought it’d take her about five years to write a beautifully crafted book, then take forever to find a publisher. Instead, the agent looked at some of the notes Kathryn had kept of her time during her career. The notes were Kathryn’s attempts to process some of the more difficult and distressing moments she encountered. ‘If something that was difficult happened, I used to try and write a single page of A4 to explain it,’ she says. ‘They were very simple notes from when I was a medical student, all the way through my career.’
Though they lacked names, and in some cases were several decades old, it turned out that they provided a deeper insight into memories Kathryn had thought were long forgotten. ‘I’d be looking at the notes and remembering the patient’s wife asking the question,’ Kathryn recalls. ‘I’d remember she asked that question because the patient who had made friends with them in the next bed said so and so. That was because the visitor opposite did something. Suddenly, instead of just having the memory of the person I was writing about, it was like being back in the room and remembering the people around them at the time.’
They became fully fleshed out stories, each of them providing an insight into the trials and tribulations we all face in our final hours – and to a story, elucidating something that we didn’t know about how to handle death. They were also well written – much more so than Kathryn ever thought. The agent helped Kathryn put together a book proposal, which was put to publishers. It turned into a bidding war. ‘Publishers were pursuing me, which was not at all what I expected,’ she says.
She wrote the book by adapting her contemporaneous notes into the book, taking advantage of the Northumberland countryside to consider the implications of revisiting some of her most difficult times professionally. ‘I love to go up onto the high hills,’ she says. ‘We’ve also got wonderful white beaches, with wind that helps blow the cobwebs away. One of the things that’s really important in life is to be able to embrace the moment and see the beauty of what’s going on in everyday life.
‘It could be that I’m looking at the magnificence of Dunstanburgh Castle silhouetted up against the sky, or taking a warm egg out of the hen house a couple of minutes after it’s laid,’ she says. ‘They’re just small miracles that help you appreciate the fantastic things around us all the time.’
The publishing battle for rights to her book wasn’t the proudest moment for Kathryn, however. That came when she was revealed to be on the longlist for the Wellcome Book Prize, an award that celebrates the many ways in which literature can illuminate the breadth and depth of our relationship with health, medicine and illness. With the End in Mind was one of a dozen titles on the longlist, and its inclusion came as a surprise to Kathryn.
‘I didn’t know it was happening until the longlist was publicly announced,’ she admits. Wellcome had tweeted out the longlist on a Thursday morning, but Kathryn, who forswears social media, didn’t hear about it until her publisher emailed her. ‘Then I went online and found it,’ she says. ‘I feel a little bit like if Whitley Bay was drawn against Manchester United in the FA Cup: you know who’s going to win, but there’s a little hour of glory. Getting onto the longlist was my cup final. I’ve no anticipation that it’ll go any further, but just that is such a lovely thing to have happened.’
Kathryn celebrated with a cup of tea and didn’t tell a soul; her son was getting married three days later, and, she says, ‘It was really important to me that the family celebrations took priority and no one got distracted by mum’s book. I didn’t tell anyone until the following week.’
When she did eventually get around to telling everyone, Kathryn was humbled by just how generous and lovely everyone was. She’s also been taken aback by the letters sent to her from readers who have been affected or helped by her book.
In fact, the success can sometimes be incredibly surprising. She’s still not convinced that she’ll make the shortlist. ‘I can’t even imagine what what would be like, and I’m not really allowing myself to think about it. I’m very satisfied with what’s happened so far and feel so honoured to be included in the longlist. That’s good enough for me.’ But in a life that’s been extraordinarily lived, who knows what’s to come?
With the End in Mind by Kathryn Mannix is published by William Collins, £16.99