What to say to the dying… and those left behind

An exclusive extract from charity worker Simon Boas’s book, written just before he died – and some advice from those who have been bereaved

Simon Boas captivated the nation earlier this year when he spoke so eloquently and generously about coming to terms with his throat cancer and terminal diagnosis on BBC Radio 4. The Telegraph’s Louise Carpenter then managed to interview him. He died a few months after, but in those few last weeks, he managed to write a book, A Beginner’s Guide to Dying, which further elaborates on his meditations on terminal illness. In this exclusive extract, he imparts some tips on how to help those who are facing their final days.
This is the number one piece of advice: don’t wait until it’s too late, or worry about doing something wrong. It’s wonderful to know that others are thinking of you, and indeed in a few cases I found myself thinking, “Bloody hell, why haven’t I heard from so-and-so?” I managed to get past that by reminding myself that people are scared of death, and of saying the wrong thing. 
However, it is nice to be contacted, and I loved receiving messages both from those I was still very close to and those with whom I hadn’t spoken in 30 years. When you make contact, though (and please message or write first, don’t call on the phone out of the blue, for the same reasons as you shouldn’t just turn up – see below), give a little thought to how it might come across. 
I was so lucky to have a very wide network of people I cared about a lot, but when one knows one is dying one needs to prioritise fairly ruthlessly, and to choreograph one’s own remaining days as much as health and tedious medical procedures allow. An unexpected visit – or indeed a visit imposed with little warning – can be a colossal inconvenience both to the dying and their immediate family. Also, worse, it means one is probably going to have to have several hours either of great emotional intensity (“I’ve always wanted to tell you this…”) or of awkward, subject-dodging bonhomie (it’s really quite hard when facing the scythe to care hugely about someone else’s children’s exam results, or their recent trip to Morocco).
Visits in general are a tricky one. Some dying people will want lots (prearranged, of course) and some will want fewer, or none at all. 
And as for “goodbyes”, personally, apart from a very few of my immediate family, I found no need or desire for final farewells. Remember me from that weekend we spent together, or the time our fireworks burned down the neighbour’s shed, not from a couple of hours when I’m feeling physically rotten.
I would venture to say that most final visits are ultimately more for the benefit of the visitor than the visited. So don’t expect to come at all, let alone just hop in the car.
All of us have different tolerances for directness or euphemism (personally I’d rather say “died” than “passed”), but you can gently broach the fact that you know the news isn’t good, and even that time may well be short. This is not the time for a breezy email about something completely different (although a tiny bit of news is always welcome). Instead, if you write or message, consider bringing up some happy memories. Unlike in person or on the phone, where the recipient is on the spot, it might even be the moment to broach the topic that “I’ve always wanted you to know…” (as long as it’s not “I slept with your wife in 2019”).
This is a surprisingly difficult one for everyone, all the time. The fact is that in most conversations we are only half taking in what the person is saying, and the rest of the time thinking about what we will say back.
People who are dying – or people who are dealing with a complex and scary new world of illness and treatment – are all different, but they are all trying to navigate something strange and frightening. I’ve lost count of the number of times I’ve tried to explain what’s going on and how I feel about it, only to be floored by a comment which shows that none of it has sunk in. (“Oh yeah, Dad had pancreatic, but mercifully it only took three weeks.”) 
So listen – and listen carefully.
Be patient and don’t be frightened of silence. We may need time to think, or compose ourselves. Silence is fine between trusting friends. Cancer people want to talk when we’re ready – we know you care and we are grateful for you giving us the time and chance to talk in our own way.
Give time and be kind. Remember, at least for now, this is about us, not you. Sorry to be selfish, but I cannot put it any other way.
However flippant I might be about my fate, be very careful about mirroring it. Just as certain words can now only be used by those they once were used against, dark humour is the preserve of the dying and not of the comforting. I might make jokes about “Indignitas” (the euthanasia clinic where they push you out of the window wearing a clown suit), or about wanting my ashes tossed into the eyes of a Peloton of cyclists, but you probably shouldn’t, even if you know me really well.
Also, avoid any sentence which starts with “at least”. I’ve had some corkers, and am lucky they amuse me, but dying people don’t want to hear that at least they’ll avoid the indignities of old age, at least they’ll be in a better place, at least they’ve paid off their mortgage, or at least they won’t have to vote in the next election.
A variant on both skirting and minimising, which my wife and I had a lot, was people insisting that against all the odds I’d recover.
People usually mean well when they say that somehow the palliative radiotherapy you’re having for the pain might cure you, or that their cousin’s dog-groomer went into remission overnight against all medical expectations, but it comes across as you not listening to me. Your refusal to accept my predicament isn’t kind; it smacks of you ducking the issue (and maybe more for your benefit than mine). If the dying person is still a Panglossian optimist then do go along with it, but otherwise bugger that.
It’s lovely to get a message saying “no need to respond to this” because quite often one doesn’t have either the energy or the mental bandwidth to do so. For that reason, it’s often best not to ask any questions, because people feel they need to supply an answer. “Thinking of you today” is much better than “How did chemo go?” Anything which can be replied to with a simple “thanks” or heart emoji conveys all that love and support without creating an obligation.
Don’t make specific enquiries about our health, and for goodness’ sake avoid touting any treatments. 
While there may well be little-known things which will one day be shown to be of benefit, there probably isn’t a global conspiracy by “Big Pharma” to keep you from accessing them (after all, there’s still a Nobel Prize in it for the first person to prove any of these things are effective). Personally, my default position is that brilliant Tim Minchin quote: “You know what they call alternative medicine which has been proved to work? Medicine!”
New scientific treatments are perhaps harder. I do understand the need to share something you believed worked for someone you know’s sister, and there are certainly trials going on now in most diseases for drugs which will be mainstream in a few years’ time. I also know plenty of cancer patients who are desperate to try anything at all, and zoom around from the new proton beam therapy in Hamburg to the pioneering immunologist in Estonia.
However, my own advice would be to be very careful recommending these.
When a dying patient is bombarded with well-intended recommendations, it puts it all back on them again (“Damn – maybe I should have tried that new chemo protocol in Istanbul which Susan sent me”). It also means that you haven’t really acknowledged that we are, indeed, dying.
Again, I see the temptation – your belief system has helped you so much, and you want the person you love to feel those benefits as well. Also, as they approach the end of their lives, many people – myself included – become more interested in matters of the spirit and the soul. This isn’t a clutching at straws, or a last punt on Pascal’s Wager, but it comes quite naturally when one can finally see death clearly, unhidden at last from all our terrors and taboos.
But please be careful, and take your lead from the person who is dying. Personally, in my last few months I enjoyed engaging in religious discussions with a few people whose opinions I really valued. But you’re unlikely to help anyone much with quotes from the Bible or the Koran, or YouTube videos of preachers, and you’re very unlikely indeed to help anyone in any way if you recommend any form of miraculous healing.
You run the risk of causing offence, by inadvertently suggesting that someone has been wrong all these years. And by awakening or feeding a sense of false hope in someone, you are potentially creating an obstacle to what I found was the most beneficial thing of all when facing death: coming simply to accept it.
Equally, if you’re a committed ostrich-headed Dawkins atheist (as I was for several years), now’s not the moment to tell someone (as I was told) that they’re no more important than “a squashed insect”.
A Beginner’s Guide to Dying (Swift Press) by Simon Boas is published on 12 September (£14.99)
And a few words from those left behind: 
Monica Bobbitt, 53, lost her husband Dan, an officer in the Canadian army, 10 years ago when he was killed in a military training accident. At the time, the couple’s three children were 14, 16 and 18
“I never thought, when Dan first died, about how hard it would be in different ways down the road. As one thing I read said, you need support long after the casseroles are gone and the flowers have wilted. I have a friend who texts me every year on May 1 to tell me she loves me and she’s thinking of me. It’s still welcome, even now – just because it’s been 10 years doesn’t mean that we don’t miss him or we don’t grieve for him still. That loss is enduring.
I’m getting remarried in December, to Bob, who is also in the military, and who knew Dan and loved him as well. People suggest it’s easier for me now I have Bob, but it doesn’t make the grieving Dan part easier, because they’re two separate and distinct things.
Yes I love Bob immensely but Dan crosses my mind every single day. We have three kids together. It’s not a case of out of sight, out of mind.”
Anna Brunskill, 44, a teacher, lost her father last year. He died of cancer a month shy of his 80th birthday
“My dad was my favourite person in the whole world. Of course I love my family and friends, but my Dad was my guy. There’s this yawning gap of all the places in my life where he was and now he’s not. The times that are hardest are when I think, ‘I’ll just call dad’ and I realise I can’t. 
I’ve not hidden how I feel and I talk about him all the time. And I’ve been very lucky because no one has had any expectation of me to behave in any way, which was what I needed – permission to be just how I felt at the time. Because the reality is that unless you’ve experienced the death of a close loved one, you cannot comprehend what it is like. You might feel immense sympathy but you don’t really understand the visceral pain. At times I feel like my grief has been immensely solitary but I’m okay with that. 
If you are comfortable with your grief, it helps other people with it. But some people aren’t open in that way. Everybody is going to grieve differently because everybody is different.”
Jamie Richards, 42, a public speaking coach, lost his brother in 2018, two months before Jamie got married
“Harry was five years younger than me. Growing up, I was closer in age to my older brother but as we all ended up living in London, we all got on like a house on fire. 
Harry was 32 when he died, and at the best time of his life. He was about to start a new job, he’d met somebody. Life was good for him. It was some form of heart attack. He managed to get himself to A&E but collapsed in reception and they couldn’t resuscitate him. 
Harry was the best of us. But when s–t happens in life, you have a binary choice: either you let it subsume you or you try to move forwards and make the most of your life. Grief can open you up and allow you to be much more understanding and empathetic. Of course people won’t always know what to say but ask the person who’s grieving if they want to talk. I love talking about Harry. I always did. My other brother talks to him every morning. 
We always used to have brothers’ dinners when we’d go out and drink. We still do that. When we meet up, we buy three beers for the first round. We cheers and leave one undrunk.”
Rachel Hemelryk, 42, is talent manager at Linklaters. Her mother died of a heart attack a year and a half ago 
“My dad died in 2015. He was 83 and had stage 4 kidney failure and had been in a dementia home so it felt like the correct thing – it was his time. My mum had a heart attack and then she died and she’d been absolutely fine two days before. Her death is the worst thing that’s ever happened to me. When people tell me she’s in a better place, I want to tell them to f–k off – she was in a great place before. I absolutely hated everybody who told me things like that. I still do. 
I’ve always been so pragmatic and stoic in life – something happened, it’s bad and let’s move on – and this is the first thing where I can’t do that. My mum was my constant throughout my entire life. She was the person I would speak to most days. I can’t replace her with anybody. 
I had a counsellor. She talked about a journey of recovery but I don’t want to recover from this. It would diminish the loss of my mum. But equally I don’t want to be sad every day. 
I think it’s human nature to immediately start talking about yourself or try and put yourself in somebody’s situation but it’s the most irritating thing in the world. I don’t give a s–t about your person. This is about my person. I don’t care about your mum dying, I care about my mum dying and the effect it had on me. So I shut myself away from people. 
There’s no timeline for grief. That’s what irritated me about the counsellor at work. Our sessions hadn’t resolved anything; it hadn’t brought her back from the dead. The only thing that helped was going for dog walks with a friend whose husband and dad had died in quick succession. Sometimes we would just cry in silence and sometimes we would scream and shout.
I’ve moved into my mum’s house and I love it, which is weird – the house is far too small for the four of us and the ridiculous amount of cats we have, but she lived here for 33 years and I love that we’re near her – and that her ashes sit in a box on my shelf. It’s all probably part of the process. But there’s no right way to deal with grief.” 
Simon Jarrett-Kerr, 81, lost his wife of 50 years, Stella, two and a half years ago 
“Stella wasn’t a morning person, so when she was alive we were both very lazy about going to church. But her funeral at church was so lovely, and I’ve been going ever since. The bereavement group there has been my saving grace. I don’t want to be pious, but the fact that I know she’s in a better place has helped with – that ghastly word – closure. It makes a tremendous difference because I know I’m going to see her again. The Lord has been very good to me in helping me. I know people think I’ve “gone religious” but I wish I was a better witness.
We have our bereavement group every month, and just being able to sit and share is a comfort. There is empathy. I also spend holidays in Spain, where we used to have a house, with my friend Peter and we have widower time together. He and I talk for hours. It’s so helpful, and remedial. 
Sometimes people don’t know how to talk about Stella. But it’s always better to say something. I don’t care what you say as long as you are brave enough to say it – even if it’s ‘I never liked her.’” 
George Perrin MBE, 43, is a leadership coach whose wife Imogen died of bowel cancer four months ago. He has three children: a son aged 11 and twins aged nine
“My experience of death is limited: the second funeral I ever went to was my wife’s. She died in March of bowel cancer. I love her completely and watching her die in my arms decades before she was supposed to has been unbearable. Yet bear it I must. I realised it helps me when other people acknowledge the magnitude of my heartbreak. That’s when I started writing, which turned into a newsletter. Putting my pain into words to share with others makes me feel seen.
From the moment of her diagnosis in March 2022, we knew there was a high statistical possibility she would die. In some ways, the grief that I and my three children are experiencing began two years ago. I always lived in hope that somehow she would be the one to beat the odds.
Now, I get up at 5am and every single minute of the day is accounted for until I go to sleep at midnight. And yet I’m still behind on everything. So the best piece of advice I have for anyone looking to support someone in my position is to make your offer to them as specific as possible. I get well-meaning messages saying ‘let me know what I can do’. But as grateful as I am for the offer, practically, the onus is on me to work out what I need. And I just don’t have the mental capacity for that. Most useful is when I get a message saying ‘I am free on Tuesday between 9 and 3, can come to your house, will cook, do some admin and help with the kids if you’d like.’ Then all I need to do is say ‘yes’.”
Case studies told to Lucy Denyer