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machado: death is absolutely certain. so why are we always surprised?
having open conversations about the end might not only ensure that more of us have the death we want, but caregivers would have no regrets.
mar 27 2023
7 minute read
even doctors have a hard time talking about death with their patients, feeling ill-equipped to have the conversation. getty
“is there an age when you’re ok with dying?” this, from my 16-year-old son.
“you know, if you’re 30 and you have a lot going on, you probably wouldn’t want to,” he said, chewing on a pretzel. “but maybe if you have had a long life, it would be different?”
there was something sweet about his words — that they were coming from a boy-almost-man looking innocently ahead at hopefully years and years of a limitless future was one thing. that he equated the end of life with age was another. just the night before, we had wrapped up a weeks-long negotiation over whether or not he could get a motorcycle: “i’m not going to get hurt,” he said, as if the possibility was ludicrous, when his dad and i mentioned our worries about his safety. oh, to be so carefree.
it’s true that death isn’t on his radar, thank goodness. nor should it be. and amazingly, even though he has grown up around conversations about cancer, accompanied me to many hospital visits, and has taken more than his share of shopping trips to buy black dress pants for family and friend funerals, the lightness of youth prevails, making chats about death and loss matter-of-fact and a little emotionally distant — in a good way.
it’s almost impossible to talk about death
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of course, it would get real fast if we were talking about the imminent loss of someone close to us, and maybe there would be a breathtaking vibe of emotion, fraught with grief and perhaps anger. or maybe the discussion would be hinged on disbelief masked by hope or misplaced positivity driven by a refusal to accept. and then there’s always just cold fear.
there’s no question that it’s hard to talk abou t death. we have a 14-year-old blind pug archie (who is doing very well) and whenever someone mentions his unbelievable longevity, they are shushed. first of all, it’s rude to talk about someone’s demise when they are in earshot (right?), but mostly, we can’t bear to even consider him being gone, and yet, we should probably be prepared. instead, we happily listen to his snorting, compliment his dashing grey hair, wait patiently at the top of the stairs that he now has trouble climbing, gently rub the growing lipoma on his leg that the vet says might make it hard for him to walk one day, all the while refusing to entertain any possibility that arch may actually not be around forever.
we do the same thing to ourselves as humans: it’s impossibly difficult to believe and truly accept that we — or those we love — will die. of course, intellectually, we know we’re going to die, but for most of us, if we are lucky, for a time, death is an intangible, far-into-the-future thing that doesn’t require our immediate serious consideration. even when someone is seriously ill, when there’s for certain only one ending, we don’t, or can’t, believe that death will be the end result. even myself — knowing way more than i should about cancer — when a doctor sat with my brother and i after his first liver cancer diagnosis and told us that he “probably had six months,” i asked if he meant six months of treatment. my brain was incapable of comprehending what he was saying.
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and when my father was close to the end of his life, he was no longer able to swallow, which obviously meant he couldn’t eat. it had been years that he couldn’t walk, talk, dress or feed himself, with each day bringing another sign that he was deteriorating. in the final months, he was confined to bed, unable to move his body, sleeping all the time, seemingly always plagued by a virus or some type of infection and endlessly enduring raging bedsores. not swallowing left two choices, his doctor told my mom: surgically inserting a feeding tube into his stomach that would have to be moved monthly, a painful procedure that would leave him prone to infection, or, do nothing.
it was hardly a choice at all. and despite the fact that the universe couldn’t have been more clear about where things were quickly going, my mom and i considered the feeding tube. it’s obvious now in hindsight what the most humane decision was, and it’s very clear what my dad would have wanted — to have no more pain. but we wanted to be able to say that we did all we could, and we most definitely were not looking to make his death come sooner, which is what the do-nothing option felt like. plus, not providing a basic need — food — seemed horrible and wrong, even though we’d be prolonging the inevitable most likely to his very extreme discomfort. and worse, no medical professional or support person would come right out and call it to help us in our decision.
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it was my oncologist, very experienced in end-of-life care, who urged me to think about my dad as a person needing relief from his suffering, rather than someone who i didn’t want to die. my mom and i painfully opted against the feeding tube and he peacefully slipped into a coma, as we took turns sleeping by his side until he passed away two weeks later.
out of four people with a prognosis less that 6 months, only one admitted it
and though my doctor was able to have a frank conversation about death, many doctors cannot, which is partly the reason it takes so long for patients and their families to come to terms with negative outcomes. a few years ago, a report by britain’s royal college of physicians found that many doctors and other health-care professionals find it hard to talk about death with their patients, with the top three reasons being believing that death is a failure, feeling ill-equipped to have the conversation, and confusion around which of the patient’s caregivers should be the one to start the death discussion.
and what about the patient? back to my son’s question, do you ever get to a point where you’re ok with dying? perhaps a story in the new york times provides some insight. writer robin marantz henig described her visit to the zicklin residence, a bronx-based 18-bed hospice that requires a prognosis of less than six months to get in. out of the four people she interviewed, only one admitted she was dying. other people facing end-of-life used terms like, “final curtain” and “passing over” instead of “death.” one person who she spoke to, in her seventies, said she wasn’t afraid of dying, but “terribly unhappy about not living.”
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it’s certainly not hard to understand — just the idea of death and dying is terrifying. but perhaps by reframing how we think about it — for example, some asian countries understand death as liberating and peaceful — we can have more open conversations, which in turn, might help ensure that more of us have the death we want. and for caregivers, it could mean being armed the knowledge of how our loved ones wish to be supported before it’s needed, and then feeling ok about everything when all is said and done.
and if thinking of the end as liberating seems like a stretch, what about, at the very least, coming to the understanding that, as kathy kortes-miller, the author of an end-of-life planning guide, puts it, “talking about death won’t kill you.” it’s also not a sign of giving up. for real. in fact, as gross and scary as it might feel, being open about death according to the experts can help to give us a sense of control over a situation that is pretty much out of our control. (mom, i promise i won’t roll my eyes the next time you tell me where your will is as you jet off to the airport.)
from my own personal experiences and those of the patients and families i have met over the years, no matter how successful or accomplished a person is, even if they are disappointed and unfulfilled, or very sick, facing the fact that life is ending is extremely difficult — for the person dying, as well as those who love them … no matter how many years have been lived. we always want more time.
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i suppose the best any of us can hope for when the time comes is the courage to sink into the inevitable, a warm hand to hold through those final breaths, and, for the loved one being left, no regrets.
lisa machado is the executive producer of healthing.ca.
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