Doctor, writer and campaigner Kathryn Mannix on love, last wishes and the divisive debate over assisted dying.
There is only one topic trickier than death, according to Kathryn Mannix, who has made it her life’s work. “We’re embarrassed to talk about love. We’re not very good at talking about dying and deaths. Oh my goodness, we’re terrible at talking about love. We’re awful at it.” Why? “It’s about being vulnerable — if I tell you that I love you and you don’t love me back.”
In 30 years working in hospices and hospitals as a palliative care doctor, Mannix has seen love and death at close quarters. Many people at the “edge of life, not everybody but a lot, have reached a place [where] they get what [life’s] all about, it’s much bigger than stuff and reputation. It all comes down to self-worth and realising the worth of other people... There’s a danger that we leave it to the last moments and wait for the Hollywood last awakening where the person wakes up and [says], ‘I loved you all along.’ And that doesn’t happen... Lots of people [feel] very disappointed.”
Since retiring in 2016 as a consultant in palliative medicine, and regional lead in the North East and North Cumbria for palliative and end-of-life care, Mannix has made it her mission to talk about death and dying, encouraging people to have meaningful conversations about last wishes and love before it is too late.
The success of her 2017 book With the End in Mind has given her a platform. “By encountering death many thousands of times,” she wrote, “I have come to a view that there is usually little to fear and much to prepare for. Sadly, I regularly meet patients and families who believe the opposite: that death is dreadful, and talking about it or preparing for it will be unbearably sad or frightening.”
I wanted to talk to Mannix because her experience seems important as countries across Europe consider legislation on assisted dying. France, Ireland, Scotland and the UK crown dependencies of Jersey and the Isle of Man may follow Switzerland and the Netherlands in permitting it in various forms, while Sir Keir Starmer, leader of Britain’s Labour party, campaigning to win the general election on July 4, has said members of parliament will have a free vote on the matter.
I arrive early for lunch at Six Rooftop, the glass-walled restaurant in the Baltic, Gateshead’s cultural centre. Shaking out my wet coat, I feel relieved that we didn’t go with our original plan to meet for fish and chips on the Northumberland coast. Outside, the sky is grey, a brooding backdrop for a conversation about death. If the interview was filmed, I’d worry that the inclement weather was too crassly symbolic. Mannix joins me at the table, pointing out the kittiwakes flying over the Tyne. “I’m sorry that we’re looking down the river in the rain because it’s beautiful on a lovely day.”
This restaurant has happy connotations for Mannix as the venue for various reunions with her year from Newcastle University Medical School, where she also met her husband. Nonetheless, the 65-year-old former consultant and psychotherapist, dressed in mauve and grey, seems trepidatious, still not used to being the one holding forth rather than doing the listening. Mannix has the soothing voice of an empathetic doctor, though occasionally I strain to hear her over the hubbub of a Bank Holiday weekend.
Is it depressing to be around so much death? “Look how miserable I am,” she smiles, relaxing. On the good days, her job provided the “best feeling in the world, you really make a difference at a point in [a patient’s] life when that really matters. You’re giving them their comfort back. The highs are high and the lows are low... You are meeting [people] who are sorrowful, but they are not only sorrowful.”
Death dispenses with social conventions. “There’s something about people’s attitude to the world and other people when there are no boundaries left that you’ve got to observe; they are the released version of who they’ve always been... and most people are naturally nice... there’s a softness.”
[Dying people] are the released version of who they’ve always been... and most people are naturally nice.
It was the case of a man brought into hospital with a long medical history that spurred Mannix’s decision to start campaigning. His two adult sons felt clueless about his final wishes because they had avoided their father’s gentle cues to talk about his eventual death, wanting to chivvy rather than depress him. “They just missed the hope of having that conversation with their dad because they thought they were going to be discussing something that was unbearable to talk about.”
What bothered her was not that their story was remarkable, but that it was so commonplace. “I [would] just wake up in the middle of the night thinking, ‘We can’t keep doing this one family at a time. We can’t keep [waiting] for the palliative care team to have a conversation about dying.’”
Improvements in medicine over the 20th century had the unfortunate byproduct, Mannix says, of shielding people from death. “There’s still a 100 per cent death rate and we need to think about when the dying can’t be stopped. What can we do that enables it to be comfortable?”
Ignorance about death and dying, she says, is “a massive societal problem”. By raising public understanding, she hopes “that when doctors and nurses do try to have those conversations, they’re talking to people who’ve got a few pegs to hang the ideas on”.
A waitress arrives to take our order. Mannix cannot eat gluten — payback, she muses, for all the years she was “very sniffy about people who develop food intolerances” — and eschews alcohol today as she needs to drive home later to her north Northumberland cottage.
Food can become poignant, she observes, because her patients tend to lose interest in eating as they reach the end of life. “It’s really hard for families because we show love through food.” For relatives determined to cook, she suggests “distilling that flavour”, perhaps a “half-teaspoonful of stewed rhubarb, vanilla custard [or] beef gravy”.
In 2015, after speaking on BBC Radio 4, she was approached by an agent about writing a book. While she had not kept a diary, she had written notes over the years as a way of decompressing. “You get home from work and the stuff that’s in your head [you] don’t know what to do with it.” So she would allow herself to get all her thoughts down on one page — any more would be “self-indulgent”.
Over the years, these notes had built up into a sizeable folder. Taking advice on patient confidentiality from medics including British neurosurgeon and author Henry Marsh, she wove together an account of her observations of death and dying through stories that are largely composites of real case studies. The book explores themes such as the physical changes during dying as well as existential issues, including how patients mentally cope with their impending death.
The response, she says, was “enormous”. Readers have said they have found comfort in the idea that death is not terrifying, but also in making sense of what happens in their loved ones’ final moments. One woman said it helped her overcome the traumatic belief that her mother’s dying breaths were an expression of pain. A mother found relief because it gave her hope that her own dying son might have heard her voice. The bereaved, Mannix says, want stories “that help make sense [of death], to feel less lonely”.
Readers frequently seek Mannix out to tell her their own experiences. In spite of her background in palliative care, she used to feel ill-equipped to deal with bereavement. “After [death], what’s left is grief... It’s just not possible to be helpful and I’ve had to get comfortable about this.” This underscored, however, the value of listening, which became the subject of her second book, Listen: How to Find the Words for Tender Conversations (2021).
‘Oh, Mum, not death again’
The oldest of five children, Mannix was raised on Merseyside. Her mother was a primary school teacher, and her father a scientist who became a scientific information librarian. Once her parents realised she was interested in medicine, they arranged for the GP to talk to Mannix in the hope that it might put her off. She went to medical school all the same, discovering a natural curiosity about patients, helping them to open up about their lives, more akin to the nursing tradition. Cancer care was her original career plan, but as a junior oncology trainee she found herself becoming preoccupied by the quality rather than length of life and in 1986 moved to a newly opened hospice.
After the arrival of her two children, she would cry on her way to work at the prospect of being away from them. “It seemed I was making the wrong choice.” Today, decades later, with a useful and satisfying career under her belt, she feels it was the right decision, “now that I can talk [to] my adult children [a nurse and primary school teacher] about it. But if I’d died when they were smaller I might not have thought that. We’re making choices that have pay-offs all the time.”
Together with her husband, whose pathology specialism was perinatal deaths, she brought her children up to understand “that things are mortal and then they die, and that’s going to happen to all of us.” This awareness meant that they were not intimidated by it, she says, although it did not stop one of them, as a teenager, saying, “Oh, Mum, not death again.”
I tell her that when my partner’s mother died last summer, I was impressed by her grandchildren’s desire to sit with her in her final days. “They are up for it and they don’t do all the second-guessing that [adults] do,” Mannix says. This demonstrates that “we are wired to be emotionally resilient. Doesn’t it get the whole of life into proportion when you’re recently bereaved and suddenly you’ve got a grip on what really matters?” I’ve been disappointed, I say, by the fleetingness of such clarity, alarmed by how quickly old worries return. “Isn’t it tragic?” she grins.
Nonetheless, the understanding of life’s transience has meant, she thinks, that she is better at “living in the moment, and when something lovely happens, really noticing it”. It has also made her careful about ill-judged comments, something she is keen to avoid as we move on to the topic of assisted dying. Ahead of our meeting, Mannix warned me she would tread cautiously here because, as with Brexit, she feels the debate has become polarised. While driven by compassion, she fears people are sharpening their positions without listening to others.
Since we arranged to meet, an election has been called in the UK. The subject of assisted dying has risen up the political agenda following an impassioned campaign to change the law by 83-year-old broadcaster and activist Dame Esther Rantzen, who has stage-four cancer.
Mannix fears for the texture of the debate. “We can be opponents about an issue and agree with far more than we disagree about, but the point on which we disagree is so important to us... Increasingly [political debate] is about point-scoring.” It means that we fail to include nuanced conversations on palliative, social and healthcare. “We’re not hearing any of that. We’re just having a ding-dong about where the law sits.”
I suggest that there is an indication of where her sympathies lie in a story from her book about a dying man who moved back to the UK from the Netherlands, where euthanasia was legalised in 2002, because he felt under pressure to end his life.
She pushes back. “I’ve been accused of being a covert anti-euthanasia campaigner because of that story,” she says. Despite admiring the “pragmatism” of the Dutch, “the idea that someone could feel persecuted” by the rules rattled her. But now, even after all her years in palliative care, “I realise I just don’t know the answer” about assisted dying. She sees advantages and disadvantages in changing the law — and in keeping it as it is.
Her biggest fear is the impact on the conscience of the elderly and ill, worrying they may “wake up every day for the rest of their lives... thinking that this is another day I’m a burden to my family... It’s changed their peace of mind over the whole of the last part of their lives.”
Quiet, comfortable deaths don’t get discussed, but difficult deaths make the news.
Is Mannix creating an unrealistic picture of dying? The charity Hospice UK says a quarter of people who could “benefit from palliative and end-of-life care do not receive appropriate support” as finances are under pressure. Mannix agrees that there is a “wide variation in services commissioned and per capita spend around the country... The NHS still isn’t taking the needs of dying people as seriously as it should.” Additionally, she points to the “immense strain” placed on community nurses and GPs.
Nonetheless, Mannix likens death to flying — the distressing experiences take up disproportionate attention, compared to “ordinary dying”. “Better public understanding of the most likely modes of dying would help to replace or redress the widespread but disproportionate fear of terrible dying. The difficulty is that quiet, comfortable deaths don’t get discussed, but difficult deaths make the news.”
Rather than focus on legislation, she wants to reacquaint the public with “ordinary dying” to help inform all kinds of end-of-life care, from home support to nursing interventions to hospice funding to assisted dying. Better access to early symptom management, she says, would help provide comfort to people with progressive and life-limiting long-term conditions. Not only would it improve their quality of life, it would reduce their fears about symptoms.
“I’m exasperated that the discussion is predicated on the assumption that dying is necessarily dreadful and the only way it can be dignified is by foreshortening it. There’s something sad about the idea that the only way we can help [make] dying better is to be dead. I worry that we will legislate without really understanding what the process of dying looks like.”
Despite the two of us picking throughout our discussion, there is food left over, which Mannix asks to be boxed up to take home. Before we leave the restaurant, which has quietened down as the skies have darkened, she wants to remind me of the importance of talking about the things that matter most. “They’re not morbid. We should do them every time our life changes. It’s so much about listening. Every good conversation we’ve ever had where you come away feeling lifted, almost certainly that [other] person listened.”
Written by: Emma Jacobs
© Financial Times
