Some tips on being good company to someone who is facing their mortality.
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One day everyone you think is cool, fun and lovely will be on their deathbed. The older they are the more likely they’ll be sick, probably with cancer, and know death is coming. If they’ve beaten you to the end, it’s likely that apart from being sad, your guts will be twisted with dread and fear, and at least some of it will manifest as social anxiety. It’s easy to fret that our trivial chit-chat about TV, accidentally stepping in dog poop, the price of cheese and whatever sports world cup is on may not cut it. Then again, straying from light topics is scary, because you might say something wrong or offensive.
“Sometimes you see friendships disappear, because I guess people get nervous, they don’t know what to say,” says Amanda Evans, a palliative care specialist. Yet she’s also seen beautiful conversations happen at people’s bedsides. “Don’t be afraid to go and see people when they’re going through this.”
Sandra*, who is preparing to eat her share of asparagus rolls and say her farewells at a celebrating life party (or living funeral), says she is looking forward to all the conversations she will have there.
Talking to people who are dying is not something most of us do often, but it doesn’t have to be scary, even when Sandra threatens to haunt you. How can we be good company to people who don’t have much time left?
Remember they are still alive
The image I have in my head of someone on their deathbed is straight off a cheap stock image website. You can barely see a human because they’re almost entirely covered up by sheets and tubes. It isn’t very flattering or accurate, just this week I’ve met a dying person who works and enjoys motorcycle riding, and another organising a party.
“Their body may be unwell, but they are the same person inside. Talk with them as you always have,” says Sandra. It seems she continues to be darkly hilarious, she says she’s been joking about alternative ways to dispose of her body once she dies.
“Just because they’re dying doesn’t mean they have a different personality”, agrees Evans. “This is the person that you’re friends with, this is the person that you care about. If they were an asshole they will still be an asshole.” She laughs, which is very much allowed when you’re around death. I’m beginning to wonder if I’m outing myself as being so afraid of death, I’ve forgotten people who are dying are, well, people. “Sometimes you do need courage to walk through the door,” says Evans, “but when you’re there, you realise that it’s actually OK.”
Trivial chit chat
When I ask Sandra if she enjoys chit-chat about ordinary everyday things, her response is quick. “Abso FKN lutley! That is 90% of what we talk about.”
Talk about death
Catherine D’Souza, who began specialising in palliative care in 2009, says even she is sometimes surprised by how open her patients are about death. “The majority absolutely welcome an open and honest discussion,” she says. In palliative care, you learn that “death is comfortable, calm and peaceful for the majority of people. It doesn’t have to be a time of suffering and despair.”
Still, one’s own death can be a lot to process. “Some people like to talk over things multiple times. They will talk about dying every day, that’s their choice. Some people don’t want to talk about it so much. They’ve had that conversation, an honest conversation, and then they feel like that’s enough,” says D’Souza.
The topic of death may need to be broached differently with children. Evans is one of only three paediatric palliative care specialists in the country, currently caring for children who are dying, through Rei Kōtuku. Evans asks if they feel like their body is changing, to which they usually say yes. Then, she asks what they think is happening. “They might turn to me and say, ‘I’m dying’.” In her experience, children aren’t as scared of dying as people might assume.
Adults often avoid the topic because they try to protect children, but “if no one’s talking about it, then it makes them feel more isolated, and more lonely and more anxious and fearful.” Evans has found that what children who are dying are most afraid of is being without their parents, so they need reassurance. “I spend time with the parents and tell them to keep saying to the child that they’re not going to be alone.”
Don’t feel sorry for them
Anna Cruse, motorcycle rider, acrobat, martial arts enthusiast and Addams Family lover has a terminal cancer diagnosis. Her cancer is not one which is causing her a lot of pain, so she is enjoying life. “I do not consider myself to be a victim. And I really really do not like it when people treat me like one,” says Cruse. Sometimes she feels people are tempted to think of her as a fragile “patient” when she tells them about her diagnosis, but “most people who know me, they know that I can’t be treated like I’m soft or delicate.”
Cruse is careful to point out she’s not a “representative of the whole dying community”. She says, “if it’s the worst pain that anyone’s ever experienced in their life, it’s going to be a lot different for them.”
By the same token, Cruse doesn’t appreciate false positivity. Sometimes people say things like “you got this,” and she thinks, “Well, yeah, I’m gonna die. This is not a battle which I am going to win.”
Evans says it’s important to remember death is not something to be “fixed”. “People don’t have to come and make it better, because there’s nothing to make better”.
Happy memories
Sandra says the conversations she has most been enjoying recently with her sons have been “laughing together about the funny things that have happened in our lives together.” Her sons have sometimes opened these conversations by asking her, “Tell me about xyz again please Mum.”
Annie Meredith, an end of life doula, has some similar openers. She asks people what brings them joy in life, what’s important to them, who are their significant people and places, and asks them to think of a time when they felt most alive (not all at once). Then, she always has a couple of questions up her sleeve to help someone keep digging into their memories – Can you tell me a bit more about that? How did that make you feel?
Have some fun and whiskey
“People don’t want to be miserable the whole time. When they’re dying, they want moments of joy, they want to enjoy the remaining life that they have left,” says D’Souza, who has seen some beautiful moments in palliative care wards.
“I remember when an elderly chap was dying, all of his brothers, uncles, sons gathered around the bedside, and they all shared a glass of whiskey together and toasted him as he was dying. That was rather moving because it was his favourite drink,” she says. Others put on favourite music, or sing, to celebrate the dying person’s life.
“I hope I’m laughing until my last breath,” says Cruse, “I love to laugh. I love to have these funny things going on. Having a clown near would be fantastic. Strippers, too. And whiskey – it’s classy.”
Some of Sandra’s friends have been cracking her up by saying things like “get well soon”. Not everyone’s sense of humour is this dark, but you “gotta laugh or cry,” says Sandra. She’d rather laugh.
Ask if they are at peace
“It is quite a weird thing to say out loud sometimes, but actually when you ask it, because it’s quite vague – peace can mean different things for different people – they bring up things that are important to them,” says Evans.
It’s the type of contemplative question which might get you weird looks if you were to ask it at a friday night barbecue, or a cringe on a first date, but next to death, it’s a gentle probe to look back on life. The question could also bring up feelings of unfinished business, which, if they’re wanting to talk through them, could be juicy.
Say the wrong thing
“People always do and say silly things. It’s okay. You can have a laugh about it. You don’t have to be perfect,” says Evans. Making an egg of yourself is just life, but it is different from pressing someone to talk about things they really don’t want to. If in doubt, ask.
Tell them that you love them
This is what Sandra thinks is most important.
Ask if you can have that dress
In Evans’ experience, this shameless honesty elicited laughter from the person dying. “It was a question that they would expect to come out of that person’s mouth, it was just that type of relationship,” she said. I’m taking this to mean that by the bedside, we don’t have to turn into angels, we can be ourselves.
On the topic of inheriting things, don’t put practical questions off the table. Asking if someone has their affairs in order isn’t necessarily in bad taste. Nor is asking them to write down all their passwords and knowing what they want done with their social media accounts. And have they planned their funeral? You can offer to help! A fun activity to do together!
Nothing at all
“Be comfortable to sit with silence, sometimes silence gives them more time to think,” says Meredith. She stresses that listening is important, and so shutting up is essential. Quiet can give the dying person a chance to bring up what’s on their mind, or for them to simply feel comforted by your radiant presence.
Evans too thinks your presence is enough, “Come and just be, you don’t need to say anything. You could just sit there and be on your phone, but being there can make the person feel less alone. There’s a lot of comfort from someone just sitting here.”
For Evans, D’Souza and Meredith, who have dedicated their careers to helping people who are dying, spending time in their company is not sad or scary – it’s a privilege. “I think some of the most beautiful conversations that I can ever have are with someone nearing the end of their life,” says Meredith, “these conversations tend to be more honest, real and authentic.”