Dr Kathryn Mannix (MBBS Newcastle 1982) spent her medical career working with people who have incurable, advanced illnesses. She found their ability to deal with illness and death both fascinating and inspirational, and she believes that a better public awareness about what happens as we die would reduce fear and enable people to discuss their hopes and plans with the people who matter to them.
Her account of how people live while they are dying, With the End in Mind: Death, Dying and Wisdom in an Age of Denial, was published to universal acclaim and was shortlisted for the 2018 Wellcome Prize. You can read the first two chapters here.
Kathryn visited the Walton Library on 3rd May 2018 to donate a copy of her book and join as an alumni member, and she sat down to discuss life, death and Eastenders with Elizabeth and Rosie from the Walton’s social media team.
What has the experience of being nominated for the Wellcome Book Prize been like?
I didn’t know my publisher had entered it for the prize, so the first I knew about it was when the longlist was announced on Twitter – and as I wasn’t on Twitter at that point, it was only when I started getting excited messages from people that I realised I’d been nominated. I’d already had lots of really nice messages from people who had been helped by the book – which was the only reason for writing it, really – but I felt that being nominated justified writing the book in an academic way, and it was something that said ‘and the writing’s alright as well’. I thought ‘that’s my prize, I’m on the Wellcome longlist’. So I really was astonished when it made it onto the shortlist as well, and as it now had a one in six chance of winning I became a person who was worrying about what it would be like if it did win!
The whole experience has been really lovely because it’s boosted sales and interest, and that means that it’s got the message out to more people. The publicity company who work with Wellcome organised a few interviews, so I’ve done a couple of podcasts – Little Atoms and BBC Science Focus Magazine – and an article for the Daily Telegraph recently as well. So all of those are opportunities to reach out to the public with the book’s message, which is: ‘Dying isn’t as bad as you’re probably expecting, but as long as you don’t talk about it or find out about it, you’ll continue to be frightened and not want to talk to people about it’.
Do you think social media has been useful in having this conversation?
One of the invitations that I had simply as a result of having written the book, rather than to do with the Wellcome Prize, was that I was invited to speak at the Free Thinking Festival for Radio 3 at the Sage, and while I was there I was asked by BBC Ideas if I’d make a little video for their ‘In My Humble Opinion’ series – titled ‘In my humble opinion, dying isn’t as bad as you’re expecting’. So they made this three and a half minute film, posted it on social media, and over the next two weeks it went on to have two and half million views on Facebook. It had lots of views on the BBC website and Twitter too, but it was really on Facebook where it generated the most interest. I think increasingly it’s older people who are now using Facebook, and I think the video’s popularity on Facebook is important because they’re the generation who most need to have those conversations.
One of the things I talk about in that little video is the noises that people make when they’re very deeply unconscious, when they’re approaching death, that tell those of us working in palliative care that the person is very deeply relaxed. They’re not distress noises or pain noises, they’re actually ‘everything’s going a bit floppy at the back of the throat’ noises. I had a tweet from an end of life nurse somewhere else in the country yesterday, that said ‘I’ve been keeping vigil with a family and heard a granddaughter say to her cousin, ‘the reason grandma’s making those funny noises is because she’s really deeply relaxed’ – just thought you’d like to know’. And I just thought ‘wow, isn’t that beautiful?’
Is there a particular book, film or TV programme that gets death or dying right?
There’s a lot that doesn’t – and I think public understanding of dying is very distorted by the silence being filled by things like Eastenders, where you’ll have several very dramatic deaths per year, which isn’t a realistic figure for somewhere the size of Albert Square. But I think that’s because normal dying isn’t terribly interesting, and it’s not going to make good drama. I did do a project a couple of years ago trying to find good Hollywood depictions of dying and couldn’t find any really to recommend. The terminal illness of Andy, Tom Hanks’ character in Philadelphia, is really well done, but they don’t show him dying – there’s a reconciliation scene with Denzel Washington’s character and then they cut to the cemetery, which is the sort of thing that happens a lot with those kinds of deaths in films.
Call the Midwife really gets dying right, and it was the visual picture that I had in my head as I was writing my case stories – it introduces people, it makes them real, and it treats them with dignity, and it doesn’t try and smooth out the difficult bits – it recognises that some things just aren’t great, and that’s the way they actually are. What’s interesting is that Jennifer Worth, who wrote the book that the TV series was based on, was interested in palliative care from the very beginning, and she went on to become a palliative care nurse.
In terms of books, I think Atul Gawande’s Being Mortal really turned a page in how we as doctors think about dying. The thing that’s beautiful about the arc of his story is that he is perfectly prepared to talk about how as a surgeon he didn’t understand managing dying as a process, rather than just trying to resist it. He talks about how he then invited his hospital’s palliative care consultant to go on rounds with him, and was astonished to find that she didn’t tell patients anything, she just asked them questions, and in asking them questions elicited from them all this information that must have just been inside them waiting for somebody to find it out. It wasn’t that it was new information, it’s just that she used a different tool – she talks about questions as being surgical instruments, and choosing a question like you would choose a scalpel. At the very end of his book he talks about applying that way of questioning, of eliciting what’s really important to somebody, to his own dad. That’s a wonderful humility on his part, and he’s saying to the medical profession ‘there’s a different way of doing this, it’s hidden in plain sight amongst us and we’re not doing it, and we need to learn more’. I think it’s a book that all medical students should read.
Another book that I’ve read recently that I’ve really enjoyed is Richard Holloway’s Waiting for the Last Bus. It’s a much more existential, spiritual contemplation of the end of life when you’re in your eighties, and I think it’s a book that would speak to us in a very different ways at different stages in our lives – as students or in our twenties, it would be about our grandparents, but if we were to re-read it in our forties and fifties when we’ve got aging parents, we would take something completely different away from it. I think Gawande’s writing is probably very similar in that respect.
How have you seen attitudes to death and dying change over the course of your career?
I think medical attitudes have changed quite a lot, but I think public attitudes have changed depressingly little. When I first qualified it would be normal for the doctor to do the worrying and not bother the patient with bad news – you might not tell somebody that they had multiple sclerosis during their first or even their second demyelination, for example. Cancers would be referred to as ‘little spots’ and nobody really used the proper words for anything. I think the idea that we are in a position of having information that the patient has a right to know, unless they declare a wish not to know, has been a huge transformation over my practice lifetime of 40 years or so. But depressingly, the ability to actually talk at home in families about what to expect and how to prepare for it has drifted away, and it was that I wanted to address through the book and the campaign.
Do you think that’s perhaps because the generations that witnessed death more regularly have themselves died, and current generations are not as accustomed to this?
I think it’s a public health issue in two ways – I think improvements in public health are responsible for people becoming less accustomed to death, and addressing this is a public health issue too. In 1900, life expectancy at birth was somewhere in the mid-50s – now it’s the mid-80s. Which means that in the space of a generation from my grandmother through my parents to me, we’ve had a whole generation of people who have not seen normal human dying during their teens, twenties and thirties. I’ve still got both my parents and they’re in their eighties, and I haven’t lost a sibling. Both my parents had lost siblings and parents themselves by the time they were in their early twenties. So they saw enough dying in family members around them that they would know there was a kind of sequence to things. It’s my generation, the current parents and new grandparents, who are the first generation to get to retirement without being familiar with dying, because of good nutrition, good sanitation, antibiotics and all the clever technical advances we’ve made.
So it’s certainly not a bad thing that people are less accustomed to witnessing normal dying, but there’s a societal adjustment to be made for that and we’re not making it. Because we haven’t seen the normal dying process, and because the reason people aren’t dying in their prime is because we’ve developed things that save their lives, now people who are no longer in their prime are rushed into hospital with the same set of expectations and then we feel that medicine’s failed when those people don’t get better. So I think it’s a really interesting conundrum.
What was your student experience like at Newcastle medical school?
I had the most fantastic time at Newcastle! I came in 1977 and graduated in 1982; I thought about doing a BMedSci, and then decided I’d rather just get qualified. I got my highest grades in psychiatry – I think it was the only thing I ever got a distinction for. I did my house jobs in haematology, which I really liked, and afterwards I did the medical rotation at the RVI.
I then did a year as a radiotherapy oncology SHO when the cancer centre was at the General. It was a really exciting time in cancer research, there were lots of big developments in molecular biology on the horizon and I was very excited by it all, but the people who I was most interested in weren’t the ones who were going to be cured, it was the ones who weren’t. We were going to have to send these people home and they needed to be able to function, to do everyday things like wash the dishes, but they had breast cancer that had spread to their humerus and it was hard to move their arm. That just seemed to me to be so much more interesting.
So by then Sunderland had established a hospice, simply by virtue of a doctor putting all his lung cancer patients into one ward and then telling the hospital ‘look, we’ve got a hospice here, we should have carpets and nicer curtains’. I went to see that and thought it was really interesting, and just at the time I was thinking that I might like to go into that area they built St Oswald’s just down the road from me, and I was very lucky and got a job as a registrar there.
But in terms of medical school, I’ve still got very dear friends who I met there – I married a boy who I met on the first morning when we couldn’t find the lecture theatre. I really enjoyed neurology – I worked for the RVI team, and the team at the General was Lord Walton’s; we would have meetings on Friday mornings alternating between the two hospitals. They were terrifying, particularly terrifying if he was there! But he was an absolutely fantastic teacher and trainer.
You used to get three-month elective periods – I went and worked in a children’s hospital in Florida, which included a stint in a summer camp for deaf children and their siblings, so I had to learn American sign language while I was away.
I had an absolutely fabulous time in medical school, and I’m very, very glad that this is the medical school I chose.
If you had one piece of advice for today’s medical students, what would it be?
I’d give two pieces of advice – one about end of life care, and one about being.
Firstly, in terms of palliative care, I think I would like to ask medical schools across the country to re-examine their practice of asking students to have witnessed a certain number of births before they can graduate, but not a certain number of deaths -because most doctors are never going to need to deliver a baby, but they’re all going to have to work with dying people, and they’re not required to work alongside any at the moment. So I would like students to have to accompany people through that last part of life, in the same ways they have to accompany a birth – they don’t just whip in and deliver the baby, they have to accompany a woman all the way through her labour to have the privilege of being there when the baby is born – and they should have to do this enough times that they can see the individual variations in the dying process, but also the basic background and pattern.
My second piece of advice is just to relax, enjoy your time at medical school, and notice everything. Just enjoy everything and take a moment at the end of the day to just think about the things you’ve been grateful for that day, because gratitude has been shown to reduce depression, increase resilience and lengthen life. Gratitude is a really useful thing.
Kathryn’s book With the End in Mind is available to borrow now from the Walton Library’s Medicine in Literature collection (near the silent study room).
