Death and dying are inevitable and a natural part of life’s cycle. The pandemic has brought the issue of our own mortality into sharp focus. Many people have died alone, away from family, and in the isolation unit of a hospital. It’s not an option many would choose. Palliative care expert Dr. B.J. Miller talks with KCRW’s Jonathan Bastian about his experiences caring for those who are at the end of their lives. He says one of the big takeaways of this moment is that we should make preparations and think about our mortality when we are healthy.

The following interview excerpts have been abbreviated and edited for clarity.

KCRW: You’ve spent countless hours with folks that are nearing the end of their life. What do people want as they prepare to die?

B.J. Miller: Well, in general there’s a ton of individual variation. This is why the subject is so interesting and that’s where some of the joy is. For the most part people want to be at home when they die. And by home, most people mean not the hospital and not the nursing home. Dying at home is doable, especially with hospice. But again here, what I really think people mean is they want to die in familiar settings, where they’re comfortable surrounded by people they love, wherever they call home. In other words, to have a minimum of gear and machines propping them up. A lot of people find peace, in the realization that they are natural creatures and that death is a natural phenomenon. And the more they can touch into that nature, the more at peace they feel, as a rule. But some of us see ourselves as fighters and quote unquote, “when I go down, I go down swinging,” and the idea of an ICU death with desperate measures happening, is fitting, so to each their own.

But to answer your question, dying at home, dying in a more natural way, dying comfortably enough so that you can have time with people you care about. So you can think about anything you know, something besides your pain for a moment here and there. People want to be at peace with their loved ones.

The idea of closure is an invented notion. Nature doesn’t promise us closure except for the idea of birth and death. But a lot of us are just social creatures and are thinking about our legacy, what do we leave behind? So a lot of people say, I just want to make sure I’m not a burden to my family. I want to make sure my family is okay.

It makes sense because I think a lot of what’s dying is the ego and the more each of us can find a way to to love life outside of ourselves beyond ourselves, but inclusive of ourselves, the easier death is on us, the more readily we can, we can handle it.

As we navigate this pandemic, it highlights some of the breakdown in the healthcare system in dealing with death?

The last thing any of us wants to do is shame each other as we’re heading off the planet. But this is exactly why — whether it’s COVID, being hit by a bus, the idea of a sudden death, of suddenly being here and then not being here, that’s always possible — when we make this subject matter taboo — hard to talk about, and the healthcare system doesn’t make it any easier and doctors aren’t trained to talk about it — we end up kind of deferring the inevitable until it’s really too late.

So one of the takeaways right now is we should all be doing our advanced care planning, our wills, our healthcare proxy, the variable putting our affairs, we should all be thinking about our mortality, if only to make sure we are present for the life we have. These are lessons that have been in the population for eons but are easily forgotten because death is such an obnoxious topic, especially in modern society. But we can be swept away in an instant and it would be so helpful to have had these conversations with loved ones before and document our wishes, especially when we’re healthy because you just never know.

You worked at the Zen Hospice Center for a long time in San Francisco, is there a spiritual dimension that you are aware of being around death for so long?

You know, I don’t know what word I like, religion, faith, spirituality, they’re all importantly different. I believe that we are all connected not just person to person, but person to tree, person to chipmunk, person or whatever, that we’re all part of something that we can’t possibly fathom. And as smart as we are, there’s still so much we don’t know. So there’s got to be some deference to mystery, some deference to not knowing.

You can look at that void or that abyss or that mystery and project judgments or you can project a sort of a universal love. For me, I happen to believe that, in general, adjectives and qualifications are human invention. But one way or another, I look at that mystery, I feel all that connection and I see love. I see humility in all that we don’t know and yet are totally a part of.

You can imagine how much this comes up when you’re dealing with patients and families, friends, anybody at the end of life. If I can sit with a patient and they’re in the throes of wondering what’s going to happen, maybe scared about what’s going to happen when they die, I often end up just talking with people about mystery and about not knowing and say, “Well, you know, I don’t know either, you know, I’ve been around death and dying for a lot of a lot of years and a lot of people and I still have no idea. And you know, isn’t that amazing?”

When I look up in the night sky, and I can see all these stars and light that’s hitting my eyes that left that source billions of years ago, empirically, there’s enough proof of connection among us or fascination around us. I’m coaxed into a faith that love is somewhere binding us. And even if it’s not the natural order, it’s certainly something that we inject and put love and meaning into this mystery.

And so sitting at the bedside, there’s a permissiveness at the end of life that I’ve come kind of addicted to, because if you’re with someone who’s only going to be around for a while, you can quickly go to the vulnerable place, you can quickly love someone without fear of Gosh, if I tell them, I love them, they’re gonna get expectations and you don’t have to talk yourself out of this very simple thing of loving someone.

So at the end of life, I don’t know what’s coming either but I’m gonna sit here with you and we’ll walk up to the edge of that abyss with you and I’m not going to go anywhere. And I’ll be thinking of you even after you’re gone and I love you, and we get to share this planet at the same time. Isn’t that amazing?

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How do we change that?

COVID-19 has taken away our ability as a society to avoid the topic of death. But we’ve needed to improve our ‘death literacy’ since well before the pandemic hit.

By Kishor Napier-Raman

For years, we kept death at arms length. We awkwardly avoided it, looked the other way, and hid it behind layers of euphemism.

But since January, death has been inching closer, a drum beat in the back of our minds getting louder as COVID-19 spread around the world. Body counts became the focus of every news update. Field hospitals in Central Park. Mass graves in Italy. A gnawing sense that within weeks, this could happen here.

In the United States, deaths started losing their meaning. The numbers quickly dwarfed 9/11, then Vietnam, then every war combined since Korea. While 189 Australians have died, and the numbers keep rising through Melbourne’s awful outbreak, there’s still a sense of distance. People die from COVID-19 in hospitals, and nursing homes, far away places we can easily ignore.

But with COVID-19, the issue isn’t who dies, or where they die, it’s often how they die. And that is something we, as a death-averse culture, might not be ready for.

A death with dignity

For a culture where talk of dying is so taboo, so many of us want the same thing — a death with dignity.

A good death, says University of Wollongong Associate Professor of General Practice Joel Rhee, can be hard to achieve. But what is key is having a sense of control.

“It’s a death where you’re in an environment where you’re surrounded by people you love. You’ve got some dignity about how you’re going through the last few months,” says Rhee.

“It’s when your concerns, fears, psychological and spiritual needs are taken care of.”

COVID-19 takes away all that. The virus robs people, no matter their age, of any sense of control over their final days.

People die slowly and painfully, choking to death in near silence. They die alone, isolated from friends and loved ones, with exhausted health workers draped in PPE. And when they go, the atomising force of the virus disrupts the post-death rituals that give loved ones the closure they need.

Funerals are restricted to just a handful of people. The whole process of collective bereavement, gathering under one roof to hug and cry, is suddenly too risky. When residents died at St Basil’s in Melbourne, their families couldn’t even enter the facility to collect their belongings.

It’s that loss of dignity and control, that isolation from loved ones, that make the cynical calls to let the virus rip seem all the more callous. Deaths from COVID-19 aren’t just numbers on a spreadsheet. They’re real people, with families who are robbed of the chance to do right by them.

Jennifer Philip, chair of palliative medicine at the University of Melbourne, says the pandemic has made the job of supporting people in their final days so much more challenging.

“A big part of what we do in palliative care is communication and supporting families. But that’s all done remotely, behind layers of PPE,” Philip says.

“When you’re doing telehealth, many of the usual gestures we use are not visible. And there’s a lot of work with connectivity — using iPads and technology that older people may not be comfortable with.”

We need to talk about dying

But even before the pandemic hit, what stops people getting a good death, according to Philip, is our inability to talk about it, often till it’s too late.

“We don’t talk about it in a meaningful way, or grown up way. Certainly not in a nuanced way,” she says.

That’s something Jessie Williams wants to change. She’s CEO of the Groundswell Project, a not-for-profit that is trying to change the way Australians talk about death.

Once upon a time, Williams says, death was sudden and it was everywhere. But as we got wealthier, as medical science advanced, we were better able to draw out our final years, and push it away.

“We don’t see death, we don’t touch it and we don’t smell it,” Williams says.

Williams, who works with businesses, and runs public campaigns, to promote what she terms “death literacy”, says she’s felt a bit of a change during the pandemic.

“We’ve been overwhelmed — we’ve seen more engagement from new people coming on board.

“We’ve had more people coming forward for end of life planning workshops, more people are reaching out to access materials.”

In his work as a general practitioner, Rhee says he’s had more patients wanting to talk about death. They’ve seen the numbers, and the pictures. They don’t want to go like that.

“They see people passing away, and they think about it a bit more,” he says.

The pandemic has upended our lives so much in under a year that it’s hard to tell what will stay entrenched. Even habits like social distancing and hand hygiene, so much a part of our conversations in March, seem to have fallen by the wayside a little.

But perhaps this period, where death is everywhere, could start to subtly rewire how we view the end.

When we understand pain

Sometime around the 4th or 5th Century BCE, in what is now Nepal, there lived a prince. Raised amid total luxury, the prince’s parents did everything to shield him from nasty, brutish and short life outside the palace grounds.

If you can believe it, the prince didn’t leave the palace till he turned 29. The first thing he saw when he’d snuck out was a man whose body was crippled by ageing. He’d never seen old age. Next was a sick man. He’d never seen disease. The prince then came across a funeral procession. He’d never seen death either. The last thing the prince saw was an ascetic — a man who’d given up life. The prince returned troubled by what he saw. The next day, the man who would become the Buddha gave up everything. Jarred by suffering and death, he chose to live the life of an ascetic.

One moral of the Buddha’s story is that the experience of death, of realising the depths of human suffering and the limits of our own mortality, can change us. Like the Buddha, many in the affluent West grow up insulated from death. And while grappling with our own mortality doesn’t necessarily produce such a radical transformation, it at the very least produces conversations and feelings we might not otherwise have.

Philip says when people start talking about death, it can be a moving, humbling and relieving experience. Often, the conversations they have aren’t laced with morbidity. Instead, they’re often far more mundane. People talk about what they value, and, at a time when they’re at their most mature, decide what matters to them.

Perhaps this is the way into talking about death. Because so much of our discomfort around dying is part of a larger, more innate human difficulty with talking about things that are inconvenient. We like to sweep uncomfortable conversations under the rug and forget about them.

The sooner those conversations about who or what matters to us happen, the better. As Philip says:

“You have to tell people you love them, or you forgive them, or you thank them. If those things are unsaid that’s a great tragedy for those left behind.”

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