Two Things You Need to Live (and Die) Well | Lydia Dugdale

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Two Things You Need to Live (and Die) Well | Lydia Dugdale

June 10, 2021

PART OF A SPECIAL 6-WEEK SERIES | Is death a threat to living well? No, says our guest Dr. Lydia Dugdale, who is a Columbia Medical doctor, a medical ethicist, and author of The Lost Art of Dying. She says that living well requires dying well. Listen to our conversation with Dr. Lydia Dugdale on BEYOND THE FORUM wherever you listen to podcasts. And don’t forget to subscribe, review, and share on social media–and please tag us @veritasforum! You can see our full slate of speakers for our first season and learn more about us at beyondtheforum.org.

Transcript

A March 11, 2020, I flew from New York City, my home over 13 years to Seattle, Washington, to visit my god-daughter and her parents. I booked the trip over Christmas and planned to spend a long weekend with them. But that long weekend turned into two weeks, and those two weeks turned into four months, and those four months turned into moving back to my hometown in Florida.

Movers and friends shipped my things to me, and I never went back to New York. When I left my apartment, I wasn't making a decision to leave for good. I left a dirty coffee mug in my sink and my rush to get to JFK.

When I canceled my return flight, my main goal was simply to avoid spending the pandemic and my one bedroom apartment alone. In Seattle, I had a family. You have a COVID story too.

Maybe you moved like I did. Maybe you got a COVID puppy. I got one of those too.

Maybe you walked 10,000 steps every day and hit your fitness goals. Or maybe, like many of us, you gained the COVID-19. No one has escaped the upheaval and change of this past year.

And setting aside all the politics and policy debates and lockdowns and masks and vaccines, most of us have felt a bit helpless this year. We have had to confront the reality that we are not in control, that we are finite. This is Beyond the Forum, a new podcast from the Veritas Forum and PRX that dives into life's biggest questions.

For our first season, we're asking, "What is the good life and how can we live it?" And we're talking with some of our favorite thinkers. I'm your host, Bethany Jenkins. I run the media and content work at the Veritas Forum, a Christian nonprofit that hosts conversations that matter across different worldviews.

We're talking about the good life. And if you're like me, anything close to the good life seemed impossible this year. But now that we're mostly on the other side, at least from where we were at this time last year, what lessons can we take with us? For our first episode, why don't we deal with the elephant in the room? Death.

In the United States alone, almost 600,000 deaths have been attributed to COVID. And you might think that death and mortality is a threat to the good life. But our guest today, Dr. Lydia Dugdale, says, "If you want to live well, then you need to die well." I'm a medical doctor and a medical ethicist at Columbia University in New York City.

I see patients there and I also teach. I direct a center for clinical medical ethics. And I attend the medical wards, both as a general medicine doctor and as an ethics consultant.

An ethics consultant is the person who comes in when there's a conflict, usually between a medical team and a patient or a patient's family. In other words, Lydia spends a lot of time thinking about what the good life means in complex and tricky situations, especially at the end of life. And in summer 2020, she released a book about medical ethics and dying that drew heavily from another massive pandemic, the Black Death in the 1340s.

So given her book and the pandemic, I was curious how her day-to-day work changed once COVID hit. Suddenly medical ethics became the hottest thing. In part because of ventilator allocation issues, which were sort of all the rage last spring, I was called by so many reporters and news outlets to do interviews on how we were going to make sense of ventilator allocation.

She said ventilators were only one problem. There were not enough beds, nurses or oxygen either. And while she was navigating those questions, she was finalizing her book too.

Its title, "The Lost Art of Dying" comes from a strain of wisdom literature called the "Ars-Moryendi", which means "The Art of Dying", and it emerged after the Black Death. The Black Death was highly contagious and fatal. Doctors had nothing to offer.

Medicine was powerless. Bodies piled high. To save themselves, family members abandoned their sick.

Parents deserted children. Wives left husbands. No one gathered at the deathbed.

There were no funeral marches and almost no clergy came when summoned. And after the plague swept through and devastated as much as two-thirds of Europe's population, there was a collective sense among the survivors that no one wanted to repeat the whole story. They wanted to repeat the horror they had experienced, not just on the medical side but on the moral side too.

And so these survivors developed the "Ars-Moryendi", which offered advice on how to die well. We're all always living and dying from the time we're born until the time we die. And sometimes I look at my kids and I wonder, you know, at what point do I see them as on the decline? We tell the thing, age 50, maybe age 40, when I was a kid we threw our parents an over-the-hill party when they turned 40.

Same. You know, what was that? Now I'm thinking, what was that? And now I'm past 40 and I'm like, wait, am I on the downhill part? What's happening? But we all are, right? We all are. In these little ways, we can, if we allow ourselves to see them, start to get little glimpses of our mortality, which become larger and larger as we age.

So we're all in this trajectory for dying. Death is 100%. That has not changed.

So then the question becomes, how do we live well in order to die well? I don't give a one recipe fits all for what that means. But I maintain throughout the book that, well, there are two pieces that are requisite for dying well. And for living well, too.

One is an acknowledgement of our finitude, right? Of our finiteness as human beings. If we never say, I am mortal and I will die, which I have had patients who are in that really, really strict denial, then it's hard to even think about living our lives such that we could die well. That's step one to a good life, acknowledging our finitude.

But the other piece is community. Community is central to human life. Human beings are relational creatures.

We live and we die best in the context of community. Now, some people say to me, well, look, you know, I'm a loner. I don't have many friends.

You know, you don't need to have a village to die well, but you need somebody. And so one exercise I often give to people is to say, imagine your deathbed. Most people picture themselves at home surrounded by their favorites, their favorite people, maybe their dog or whatever.

Who do you want to be at the bedside? And then what is the state of those relationships today? And what sort of work do you need to do to invent? Do those people know how much you care about them? The piece about community. For me, this has a lot of personal implications. I'm single.

I don't have children. I think about, you know, my parents, I'm very close to, but most likely, statistically, they will be gone by the time I'm on my deathbed. I do have a brand new COVID puppy who I hope out lives me who I definitely hope will be at my deathbed.

But I have a lot of thoughts and I think a lot about who is going to be next to me on when I'm dying. One of the most significant parts about your book for me was reading that chapter on community. And the way I thought about it was if you don't want to die alone, then you have to not live alone.

In other words, people won't pop up at your deathbed out of nowhere. You really need to be living life with people. One thing that has been very hard for me as I read that chapter and I thought about my own life was thinking about the stories of people dying alone during COVID.

And how even if they lived a life, well, they actually died fairly alone because of the challenges that a pandemic presents. How was your experience with that? Was that overhyped in the media? Was that accurate? What kind of emotions went for you there when somebody is quite alone at their death? Well, I did have some patients who died without any contact with their family apart from, you know, holding the iPad. And our hospital again did everything it could to try to address this.

And we bought thousands of iPads so that they were in plenty supply. But it was tragic. It was tragic.

I believe that the lonely deaths of COVID will go down in history as the worst part of the pandemic. Because on some level, you can't do a whole lot about an infectious disease. I mean, I say that saying, well, yes, if you mask, if you quarantine, right, if we would have tested if we, there were things we could have done.

But given the circumstances, people were going to die of COVID. But it was our policies that made them die alone. And that just breaks my heart.

Lydia told me about a nonprofit research group who published a report on the experiences of nursing home residents during the pandemic. The transcripts of these interviews are heartbreaking. An elderly woman who lives in the same facility as her elderly husband and hadn't seen him at the time of the interview in more than 100 days.

Repeatedly, people use the word, I feel like I'm in prison. I feel like I'm in prison. One person said, I see staff come and go.

They bring in COVID too. So why can't my own family come to see me? I mean, the logic is impeccable, of course, if staff who also live their lives and might have COVID exposures can come and go, why can't family members put on a hazmat suit and an N95 respirator and visit with their elderly relatives. But I will say that visitor restrictions have made things easier in institutions.

It's a lot less hassle for staff. And everybody's afraid that will drive up nursing home deaths again, which was a tragedy, you know, it has been a tragedy that so many older folks have died from the virus. So it's complicated.

I don't envy the people who've had to create the policy, but I also feel that it's gone on for too long. Our older folks are vaccinated now. Those in institutions are vaccinated.

And even though that, you know, the vaccine is probably not going to be the panacea that we hope it will be, we need to prevent lonely deaths. Hi, all. I'm Carly Uschelman, the assistant producer of Beyond the Forum.

If you're loving the podcast so far, we want to invite you to continue these important conversations on our Instagram account at Baratas Forum. Follow us throughout our podcast season to access behind the scenes content, exciting giveaways, and conversations with other podcast listeners like you. Thanks for tuning in and enjoy the rest of the show.

The idea of dying alone is terrifying, but so is the idea of death itself. So far, all we know is life, accepting our mortality doesn't come naturally. Lydia says this primal fear, this denial of death has shaped our national discourse on the pandemic.

It's been fascinating for me doing the work I do and then having the book come out to watch the narrative around this pandemic. Everything has been about the language of victory, conquering this virus, containing it. You know, it's the Susan Sontag wrote a book, Illness is Metaphor, and she writes compellingly about this military language that we've appropriated in medicine.

And that's been the whole narrative this last year, very rarely. Will you read a piece that is reflecting on mortality and asking how we might prepare for death, how we might prepare it to die well. I've been struck by the absence of that conversation.

Obviously, I've contributed a little bit in some pieces I've written to the conversation in that regard, but there's been very little. Part of it is that the overwhelming nature of the pandemic and the fear, especially a year ago, the fear that went along with it is not conducive to sort of getting people to sober up and think about their death, right? They're afraid of death. They're running from death.

In her book, Lydia talks about how accepting our mortality is a process. It takes time. She recommends incorporating rituals into your life to practice for it, like attending funerals, or preparing a loved one's body for burial, or deciding in advance what life-saving measures you or your loved ones will take when the time comes.

And the time will come. Yeah, the sort of strange irony if that's the right word is that there were a number of stories last spring of people who left the city and then in their commute back to the hospital, ended up getting in car accidents or bicycle accidents and losing their lives. So it's interesting that responding to the fear of mortality, the threat of our mortality, we do something radically different, and yet we still end up dying.

So we fight off this virus. Does that mean we fought off death? No, absolutely not. We're all going to die.

This is this idea from last spring of if it's not COVID, it'll be something else. So whether we die from a virus or from a car accident or from old age, we will die. At acknowledging that, that we're finite creatures, is an important part of both dying and living well.

But accepting our finitude and living in community, those two ideas both have spiritual overtones to them. So I asked Lydia about that. I'm curious, you talk in the book in particular about the spiritual realm or about religion.

I'm curious what role spirituality or religion can play for any one of us as we think about living and dying well. So I told you earlier that one of the reasons I got interested in doing this work is because I've seen so many patients die, these sort of horribly medicalized deaths hooked up to machines that are to have no benefit to them apart from delaying death a day or two or a few hours. The other part that motivated this work, though, for me was having patients receive horrible diagnoses and then coming to me as their primary care doctor and saying, how do I make sense of this? What does this mean? What is my life even about? And by the way, Doc, what happens when I die, I kid you not that the primary care doctor really becomes the sort of, I don't know, dumping ground makes it sound bad, but really the one to whom many people go because there's no, you know, there is no priest anymore, or there is no granny living in the home, you know, that you would have used to address these existential questions to.

And so I've been on the receiving end many, many times as a primary care doctor. And part of that started getting the wheels turning for me. You know, I'm not a theologian.

I'm not ordained anything. I am a person of faith. So when patients come to me and say, I don't know how to make sense of my terminal diagnosis of this bad news of my sister's suicide of whatever it is.

One of the things that I started to do in my practice is just respond with some gentle questions. Well, you know, what sort of context were you raised in and how did your parents make sense of these questions. What sorts of stories were you told, were you a part of a religious community, what kinds of things do you read, and sort of through gentle questioning I would begin to open up the conversation to addressing some of these bigger questions.

And my goal was, you know, not interested in proselytizing my patients I'm not trying to convert anybody, but I do function in these contexts as a sounding board to help people start to, in a sense, interrogate the deeper truths of their lives to start to come around to what gives their lives meaning. And so it seemed critical to me that if I'm writing about preparing well for death, that I include a chapter on religion and spirituality, actually I start with the spiritual but not religious and sort of move into religion. To get those wheels turning for people, and to encourage them to think about these questions that fundamentally have an impact on our ability to die well.

I tell the story of a patient of mine, I was called to her bedside, literally as she was dying and wrestling with all of these questions, it was a mess. For me, trying to be that sounding board as she was actively dying felt too late. And again, it felt like a bad death that she had unresolved spiritual questions that were plaguing her and her dying.

That was part of the reason that I wanted to write a book, not to tell people what to believe, but to encourage people to think about what matters to them with regard to their belief system and to start working out those questions now in the context of community before it's too late. Working out what matters to you in the context of community before it's too late. I'm not sure how often you think about dying well, especially about dying well as a companion to living well or living in the good life, but I think about it a lot.

I think about who will be with me as I'm aging and ultimately dying, about what success means and how to balance it with significance. And I think about what comes after this life and how that might shape how I'm now living. Earlier I mentioned that I was on the downhill side of turning 40.

When I turned 40, my mom gathered notes from friends and mentors who had already turned that fateful age. She compiled them in a book that she titled "Teach us to number our days" which comes from Psalm 90, verse 12. "Teach us to number our days that we may gain a heart of wisdom." And one of those notes I've read and reread and reread many times.

It's from my friend Tanya. She wrote, "40 is not the new 30. That may be a phrase coined by people who only care about what is going on outside of a person.

But for a soul which has spent its 20s and 30s searching and unsure of itself and getting bruised over and over again, the 40s are when that soul realizes, like the velveteen rabbit, that it has gotten real. It knows that every time it has gotten hurt, it has found a sure resting place in God, it knows that every time it is made of wrong turn, that has revealed to her more of who she is and what she is made of. The soul has become okay with uncertainty in this life because of the certainty of eternity with God.

There is a beautiful freedom at 40, one by years of walking and running and stumbling and rising again and throwing off all the hinders." Tanya doesn't mention the word "death" in her note, but she assumes it when she says that the certainty of eternity with God makes the uncertainty of today, all the uncertainty of the past year, okay, life is uncertain, but death is not. It will come for all of us. The question then is how now shall you live in light of it? This is the question I hope you will ask yourself in the coming weeks of this podcast.

You have one precious life. How will you choose to live it and strengthen your own community? Or, as Olivia put it, encourage people to think about what matters to them with regard to their belief system and to start working out those questions now in the context of community before it's too late. If you loved this episode, but maybe are more curious about the good life and light of community, especially when our communities are so divided and fractured, then you're going to love our next episode.

I talk with Dr. Kurt Thompson, a psychiatrist, about relationships and the good life. He says that leaning toward hard relationships, not away from them, makes us more resilient, not less resilient people. You won't want to miss it.

Hi again. This is assistant producer Carly Eshman. We at Beyond the Forum want to take time to say thanks to all the folks who helped us get this episode together.

We're so grateful for our guest on this podcast, Dr. Lydia Dugdale. Thanks also to our amazing production team at PRX. That's Jocelyn Gonzalez, Genevieve Sponseler, Morgan Flannery, and Jason Saldana.

And of course, we want to thank the John Templeton Foundation and all of our donors for their generous support of our conversation. And a final thanks goes to our launch team and co-sponsors. It's so great to have your support and help as we produce these shows.

That's all for this episode. Thanks for listening to Beyond the Forum.

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