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On Being with Krista Tippett is a public radio project delving into the human side of news stories + issues. Curated + edited by senior editor Trent Gilliss.

We publish guest contributions. We edit long; we scrapbook. We do big ideas + deep meaning. We answer questions.

We've even won a couple of Webbys + a Peabody Award.

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Contemplating Mortality: The Need to Remember That Death Is a Human and Personal Event, and Not Just a Medical One

by Krista Tippett, host

Trees and forest.Photo by Long Lim/Flickr, cc by-nc-sa 2.0

It’s difficult to believe these days, when so many of us have had some experience of moving toward death with a loved one in hospice, or even a stranger on the CaringBridge website, how “badly” people died in this country until very recently. That’s the word Dr. Ira Byock uses. He began his life in emergency and family medicine and recalls that when people were deemed to be dying — when what was wrong with them was beyond “fixing” — they too often died in pain in the hospital or were simply sent home. Doctors practicing now still recall their training, implicit and explicit, that death was a failure of the body, and of medicine. We turned away from it, scientifically and culturally.

The palliative care and hospice movement arose first in England and then took hold in the U.S. in the 1970s and 80s to compassionately treat the pain of chronic illness and all the suffering — physical and otherwise — as the end of life approaches. Its spread has converged with the continued advance of medicine. In our lifetimes, many forms of cancer have transformed from fatal diagnoses to chronic illnesses.

As I was preparing for my interview with Dr. Byock, I re-read a gripping New Yorker article by the surgeon Atul Gawande. It chronicles the increasingly blurring boundaries between treating illness, prolonging life, and staving off death. When one woman asks him if her sister is dying, he realizes, “I wasn’t even sure what the word ‘dying’ meant anymore.”

Dr. Ira Byock with PatientsDr. Byock sees this as a human opportunity and challenge. Medicine is remarkable, he knows from the inside, and will continue to get more remarkable with the passage of time. But we must “grow the rest of the way up” and acknowledge that we have yet to make one person immortal. Even while we fight for life with all the tools at our disposal, we have to reckon with the reality of death. The good news, as he tells it, is that there are riches to be gained in that reckoning. That edge of life — which our miraculous medicine allows some to perch on longer than ever before — can be a time of unparalleled repair and celebration. Like it or not, as Dr. Byock says, death completes us. These days more than ever before, we can shape that moment of completion together with those we love.

With this kind of thinking, Dr. Byock is taking the impulse behind hospice to a new place. He goes so far as to suggest that dying can be a developmental stage of human learning and actualization — like adolescence or mid-life accomplishment. He names “the four things that matter most” — words that can be transformatively spoken and enacted — at the end of life: Please forgive me. I forgive you. Thank you. I love you. These are four sentences, a mere eleven words, with a power to call up a lifetime of struggle in so many of our families.

I think here of that phrase attributed to Oliver Wendell Holmes that has recurred so often in my interviews: the “simplicity that lies on the other side of complexity.” For in the time of life we call dying, as Dr. Byock describes, these elemental human capacities like thanks, love, and forgiveness can unfold in their most complex and immediately redemptive power. The Four Things That Matter Most by Ira ByockI love this quote of the theologian Paul Tillich, which he put in the preface of his book The Four Things That Matter Most, and which points at the way being with dying has opened Dr. Byock’s imagination about the word “forgiveness”:

"Forgiving presupposes remembering. And it creates a forgetting not in the natural way we forget yesterday’s weather; but in the way of the great "in spite of" that says: I forget although I remember: Without this kind of forgetting no human relationship can endure healthily."

One difficulty of this conversation is that there are no rules for when, in any life or any course of medical treatment, we can know we have crossed the boundary between fighting death and facing it. Dr. Byock suggests that this is not an either/or but a both/and. Still, there is something fierce and sacred in us that resists the end of our life and the death of those we love. That same impulse resists the kind of contemplation that happens in this conversation as well. One of Dr. Byock’s most basic insights may be his most helpful: we must remember that, even in the 21st century, death is never really a medical event but a human and personal event. Dying is a defining feature, strange and mysterious as it remains, of living.

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Hope at the End of Life

by Judith Leipzig, guest contributor

Waiting Room NapPhoto by John Starnes/Flickr, CC BY-NC-SA 2.0

On my first day as a chaplain at Calvary Hospital, a palliative care facility in the Bronx — a place where every patient was near death — I was overwhelmed. In the other hospitals I had worked in, I had sat by the bedsides of patients who were frightened, lost, conflicted, and alone — whose lives were rife with hardship, and who often had few resources to help them make their way. But there had been — almost always — a future to reference: the possibility that addictions could be overcome, that illness might recede or be cured, that physical pain might be relieved, and certainly that a time would come — in a few days or weeks — when the patient would go home and resume his life. Almost always, hope was an assumption for me and for the patient. No matter how much suffering, hope was implicit in the fact of being alive.

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And slowly, I see why it might be easier to just make phone calls from the safety of one’s home than to be witness to a seemingly unending stream of medical misfortunes. … I realize that their puzzling reaction to illness is not so much selfishness as self-insulation.
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Dr. Ranjana Srivastava, from her essay "The Loneliness of Visiting" in this week’s edition of The New England Journal of Medicine

Hospital Visit"Hospital Visit" (photo: Bart Heird/Flickr, cc by-nc-nd 2.0)

A Doctor in the Waiting Room

by Nancy Rosenbaum, producer

When a close friend of Dr. Srivastava suffers a stroke, the medical oncologist from Melbourne confronts the difficulty and helplessness of being a hospital visitor. The experience makes her more empathetic towards her patients’ absent loved ones who visit sparingly.

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Developing a New Lifeline for Alzheimer’s Caregivers

Nancy Rosenbaum, associate producer

Ina and Arnie, January 2000
Ina and Arnie Feidelman, January 2000. Arnie was diagnosed with Alzheimer’s the following month.

The perspectives of people caring for loved ones with Alzheimer’s is “worthy of a show unto itself,” as Krista put it. Indeed, many of the people who wrote to us when we first released "Alzheimer’s, Memory, and Being" articulated the full range of emotions — pain, love, anger, bewilderment — that caregivers can feel. And while this week’s show references the caregiver experience, it’s not at the center of Krista’s conversation with Alan Dienstag.

He’s now in the process of developing a new therapeutic initiative for caregivers called “Ina’s Story,” which is based on the first person account of a former patient, Ina Feidelman. She spent 10 years caring for her late husband Arnie, who suffered from both Alzheimer’s and Parkinson’s.

Here’s an excerpt from that account, titled “Needing Help”:

"People began to tell me that I should get help in the house. My children my brothers and friends were all concerned about me. They were worried that I was ‘killing myself.’

I put Arnie in a day program 2x a week from 1-4 PM. He hated it. He only wanted to be with me. I hired an aide to do some food preparation, to shower him and so on and it was pointless. He would not accept her, and he was angry. He only wanted me. She lasted three weeks. He told me, ‘I know it’s hard honey but I don’t want anyone to take care of me but you…I need you here with me.’

I said, ‘But Arnie, I am being worn down. I can’t do it anymore.’

I was it…

I cried a lot during this time. I used to cry in the shower, it was private time. That was when I let it hit me…

And I was very angry. Why had this happened to us? I actually had the thought that maybe we were too happy, that somehow things were too good and it had to be taken away from us. It sounds crazy now, but that is what I was thinking. I remember discussing it with my brother, he said “Ina, you were dealt a bad hand, that is it, there is no reason.” I believe that is true, but that is not how I felt then.”

Ina’s story is powerful, Dienstag says, because the trajectory she experienced, both practically and emotionally, is so typical of caregivers: “Our hope is that we can use it to help caregivers who are at the beginning of the process that she has already completed.”

Arnie at the Sarah Neuman Nursing Home August 2006
Arnie and Ina Feidelman, August 2006.

He also hopes this new project will motivate caregivers to seek psychological support in greater numbers: “The truth is that many caregivers fear (and sometimes hope) that they will not survive the experience of caring for someone with dementia and, remarkably, many go through this without any help.”

Dienstag and Feidelman are seeking funding for the project while they develop more written materials.

All photos courtesy of Ina Feidelman.

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Alzheimer’s, Memory, Being

Krista Tippett, Host

This week’s program is another one that draws on my past and tugs fiercely at my heart. I write about my formative, wonderful, heartbreaking experience as a chaplain to Alzheimer’s patients in my online journal this week. When I wrote my book a couple of years ago, I had to recognize the men and women I came to love who had Alzheimer’s as being among my greatest teachers. And I found in Alan Dienstag the wise teacher and conversation partner about this experience that I’d been waiting for, without knowing it, all these years. He wrote to me afterwards that the conversation was very nourishing for him, almost therapeutic, and it felt that way for me too.

Like the best of conversations that delve deeply into particular human experiences and passions, as Trent noted after he heard the interview, it speaks beyond those particulars to the wider human condition. This is a mystery, and part of the reason I keep doing this work.

I’d also like to do a kind of shout out and thanks here to the Masonic Home and Hospital in Wallingford, Connecticut, where I spent several hours each week over 18 months that are now woven into the fabric of a radio program. Recently out of the blue I received an e-mail — through our show inbox — from Ray Cooley, who was the chaplain there and my mentor and supervisor through that experience. It meant so much to me to hear from him and to know that he’s listening!

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