One person who knows this all too well is Kerry Egan, a hospice chaplain. As well as graduating from Harvard, writing several books and contributing to news outlets, Kerry spends her time with people, both young and old, who have found themselves in the last days of their lives. Her job is to give spiritual care to the dying, and their families and friends. Often though, her role is just to listen as people reflect on their lives.
Now, she has written a book about some of the people she's come into contact with in hospices. From Gloria who, in the last days of her life, opened up to Kerry about a decades-old family secret, to Linda, whose identity was uncertain even at the time of her death, to Betsy, who begged Kerry to push her wheelchair outside so she could "feel the wind against [her] pussy again"(!), Kerry's experiences are a fascinating insight into a time of great vulnerability.
We decided to ask her what she's learned about life from spending so much time with people who are at the end of theirs. What do they wish they'd done differently? Who do they wish they'd spent more time with? And how can we take their end-of-life contemplations and apply them to our lives for the better?
"Few dying people's final reflections on their family are entirely negative or positive. It’s both really, within every family. Even people who had really healthy, happy families still had experiences that hurt or disappointed or angered them with family members. And even people who grew up or lived as adults in terrible family situations would sometimes linger on the fleeting moments of joy and love and acceptance they felt in their families. Talking with people at the end of life has made me realise how important family relationships are, while at the same time making me realise that they’re never going to be perfect, even in the best of situations. You don’t have to be perfect to be a good mother or daughter or wife or sister, but you do have to try to be there for the other person. Somehow that’s very reassuring."
"[The regrets people speak about are varied], it’s so hard to generalise, because people who are dying are just as different from each other as people who are in the middle of life. But one of the more common regrets is that people wish they had shown each other love more. Often people deeply loved their family members, but never said it or showed it, and they wish they had."
"I think there’s a difference between keeping private things private, and keeping secrets that drive people apart. In our oversharing, social media, Instagram-perfect world, the difference between privacy and secrecy has somehow become confused or blurred. People post photos of their dirty dessert plates at a fancy restaurant, but keep it a secret when they’re lonely or when they’re in pain. If some secret is driving you away from the people you love, maybe consider if it’s something to share. If you know you need to tell someone a secret, do it now while there’s still time to work through the ramifications of that secret together. Sometimes people tell a deathbed secret and the family is left behind to work it all out in the midst of their grief. That’s a very difficult burden to leave behind."
On learning from bigotry
"I think the suffering caused by racism, sexism, homophobia, ableism, poverty, lack of access to a good education, lack of access to good medical care, and lots of other human-created problems can’t be overstated. There is some pain in the world that is unavoidable: grief, kidney stones, falling in love with someone who does not love you back – the list can go on and on. But there is some pain – a lot of pain – in the world that is completely unneeded and unreasonable and that humans are choosing to cause. It’s suffering that can be prevented. We need to decide to be brave enough to face it head on, and to face the ways in which we may be causing suffering to other people."
"People are usually sad about losing the unrestricted and pain-free use of their bodies, and they regret not appreciating their bodies more when they were healthy. That said, it’s also important to realise that people who have limited motor skills for whatever reasons (whether it’s Parkinson’s or MS or ALS or any other number of illnesses and conditions) are still very much alive, vibrant people who don’t want to be pitied. I’ve never met a single person who wanted pity. Compassion, yes. Engagement, yes. Help if needed, yes. But pity? Never. Don’t pity someone who has lost some or even the entire use of their body. Talk to them as the regular human being that they are instead."
"Lots of people regret their vices, especially if it hurt the people they loved. Lots of regret about drinking, especially when it led to pain in a family. But lots of people have no regrets about their vices at all. Some people who love to smoke still absolutely love smoking, even at the very end of life. I can’t tell you the number of people who would be on oxygen – will be literally dying from their smoking habit – light up a cigarette, take a deep drag, and smile like they’ve just experienced the most wonderful thing in the world. I learned to ask if they’d mind turning off the oxygen so we don’t blow up while they enjoy their cigarette. If I had to make a broad generalisation, I’d say the regret around vices was usually around hurting other people rather than the impact of the vice on their health."
On body image
"Do people think about how much cellulite was on their thighs, or that they had great six-pack abs? No, no one has ever said that this was the main regret or achievement of their life. Never, not once. I knew a woman who was dying of breast cancer. It was really important to her that I touch her tumours on her back. She wanted me to feel them, and to feel me touching them. The whole encounter felt very strange to me at the time. And because she was so thin because of the cancer eating away at her body, she was almost skeletal, the rock-hard tumours literally bulged out of her flesh. She said, 'I spent my whole life wishing I was skinny. And I’ve finally lost all of the weight I spent my life trying to lose. And I would do anything now to have it back.'"
On working too hard
"People did sometimes talk about work. For many people, work is the single most important thing that gave them a sense of purpose. You know that old saying, that on their deathbed, no one wishes they had worked more? That’s not true. There are lots of people who wish they had had the chance to do more of the work they love. It’s actually the topic of the new book I’m working on now."
"If money played any part in regrets, it’s only that some people worried about leaving their spouse or children without enough money to live on once they were gone. No one ever regrets not wearing that £5,000 dress or never owning that Lexus. Here’s the most important thing about regrets at the end of life: no one is ever shocked by their own regrets. No one ever says, 'I can’t believe I regret being such an asshole to my kids!' You know how to know what you’ll end up regretting at the end of life? It’s whatever you regret or wish were different right now. So if you really regret the fact that you have no time for your friends right now? You’re still going to regret that in 30 or 40 or 50 years. The difference is that right now, you have the chance to fix the situation."
On Living: Life’s Greatest Lessons And Last Thoughts From The Dying by Kerry Egan is available now from Penguin Books