What if we understand death as a developmental stage — like adolescence, or midlife? Dr. Ira Byock is a leading figure in palliative care and hospice in the U.S. He says we lose sight of “the remarkable value” of the time of life we call dying if we forget that it is always a personal and human event, and not just a medical one:
"I don’t want to romanticize it. Nobody looks forward to it. But we shouldn’t assume that it’s only about suffering and its avoidance or its suppression. That in addition to, concurrent with the unwanted difficult physical and emotional social strains that illness and dying impose, there is also experiences, interactions, opportunities that are of profound value for individuals and all who love them."
- 229 Plays
- Compassion's Edge States: Roshi Joan Halifax on Caring BetterOn Being with Krista Tippett
"Be very mindful of what is appropriate for you because, I tell you, to stop in this world is to create the conditions where a lot of unusual experiences can rise up. So be very respectful of your situation and proceed with love and with care as well as courage."
It can be a stretch to summon buoyancy rather than burnout in how we work, live, and care. Roshi Joan Halifax is a Zen teacher and medical anthropologist who’s been formed by cultures from the Sahara Desert to the hallways of American prisons. She founded the Project on Being with Dying. Now she’s taking on the problem of compassion fatigue, though she doesn’t like to use that phrase. For all of us overwhelmed by bad news — and by the attention we want to pay to suffering in the world — Joan Halifax has bracing, nourishing wisdom on finding this buoyancy in our daily lives.
"I would just like people to believe that humility — listening to the other person and trying to understand the other person — and forgiving are important."
—David Plant, who reflects on his legacy knowing his skin cancer has spread to other parts of his body
Photo of David Plant with his stepson Frank Lilley courtesy of StoryCorps
What shall we do about the elderly dying with dementia, losing who they are — how do we help them “die well”?
My mom is at the end stage. She is losing her abilities to speak, to eat. How do I help her? Is it okay to talk about dying with her? I do read to her, I tell her I love her, I see her as often as I can at her long-term care home. But as she declines, I am not sure how to help her “die well.”
I have had a great sense of healing in my time with her in this stage of life, but as I see her becoming less and less connected I am not sure what to do. How can I help her at this stage? Perhaps just being there, holding her hand, reading, I am not sure. How do we address her dying? Is it okay to talk about it? I don’t want her to die without being at peace about it.
—Annie Voldman, in response to "Contemplating Mortality"
We received this powerful note with searching questions yesterday from a listener in Vermont. What advice would you offer her, or suggestions on resources that would give her good counsel? Please leave them in the comments section and we’ll forward on. Many thanks for your help.
~Trent Gilliss, senior editor
“I’ve been more than blessed with people, with miracles, with angels all around. When I’ve been in trouble and couldn’t get up the stairs, along came a neighbor, and she just said, ‘Can I help you?’…So I consider myself really blessed, and I want my children, I want everyone to know that they need to help one another. It comes back to them ten-fold.”
—Ruth Wilkes, on what she would like to tell her family before she dies
Photo courtesy of StoryCorps and Suncoast Hospice (distributed with instagram)
The Witness of True Love and the Grace of Loss (Video)
by Trent Gilliss, senior editor
The notion of contemplating mortality can be an abstract one for those of us not facing death. It can be waxed about in highly romanticized language, such as in a Wallace Stevens poem, or shown on television in the most inhuman ways, leaving us cold and unmoved.
While editing this week’s show on facing and contemplating reality, I suggested we ground our interview with Dr. Ira Byock, a leading figure in palliative and hospice care, with other people’s voices from StoryCorps. Their words, their stories, I hoped, would take Dr. Byock’s clinical experiences and complement the doctor’s ideas about dying well with the necessary pathos of those families facing death.
To close the hour, we included audio of Annie and Danny Perasa, a couple from Brooklyn, New York. They had been married for 27 years when Danny was diagnosed with a fast-spreading, painful form of terminal cancer. It’s a love story illustrating that the process of dying is not only a medical event, but a personal one in which “eloquence, grace, and poetry” can still be found. Danny passed away on February 24, 2006.
As a result, we’ve heard from so many listeners asking to hear this audio again. Here’s a wonderful animation extending the story you heard on the radio.
- 500 Plays
- Contemplating Mortality with Ira ByockOn Being with Krista Tippett
Contemplating Mortality: The Need to Remember That Death Is a Human and Personal Event, and Not Just a Medical One
by Krista Tippett, host
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. 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. I 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.
Hope at the End of Life
by Judith Leipzig, guest contributor
Photo 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.
I want to be alone and work until the day my heads hits the drawing table and I’m dead. Kaput. Everything is over. Everything that I called living is over. I’m very, very much alone. I don’t believe in heaven or hell or any of those things. I feel very much like I want to be with my brother and sister again. They’re nowhere. I know they’re nowhere and they don’t exist, but if nowhere means that’s where they are, that’s where I want to be.
The celebrated author of Where the Wild Things Are and other award-winning children’s literature just released Bumble-Ardy at the age of 83. He recently lost several loved ones, including his long-time partner, and shares his thoughts on opening up to his mortality with The Associated Press.
Twitterscript of Jane Gross, a “Dear Abby” of Caregiving
by Susan Leem, associate producer
Krista brought Jane Gross to our attention at our weekly Monday staff meeting as someone who knows aging intimately from the “far shore of caregiving.”
This Pulitzer-nominated journalist developed her expertise on caregiving and aging not just vocationally, but through living this experience with her elderly mother in her final years.
She started The New Old Age blog for The New York Times and shared her most joyful moments and unexpected insights from role reversals of “becoming my mother’s mother” to learning how to collaborate with her adult sibling. She also has a book called A Bittersweet Season: Caring for Our Aging Parents and Ourselves.
Putting words around end-of-life issues is such a difficult task that, even in our tweets, it became difficult to substitute the words “death,” “dying,” or “aging” literally when she used demonstratives like “this” and “that” to represent those ideas in conversation.
We live-tweeted highlights of this 90-minute conversation, which we’re aggregating and reposting for those who weren’t able to follow along. Follow us next time at @BeingTweets:
- @Janegross settling in at the mic as Krista begins her interview! 15 Jun
- "I don’t even remember SEEING old people when I was growing up." -author Jane Gross 15 Jun
- "Very few people tell you along the way that just because you CAN fix X or Y doesn’t mean that you should." -Jane Gross 15 Jun
- "My mother and I had a difficult relationship. I didn’t race to the loving caregiver’s role with an open heart." -author Jane Gross 15 Jun
- "It kicks up all the dust of childhood, everyone becomes who they were when they were 10." -Jane Gross on the stress of caregiving 15 Jun
- "(My brother and I) thought the faster we moved, the faster we could get back to what our lives were like before." -Jane Gross 15 Jun
- "Most of us are more afraid of the process (of dying) than the fact." -author Jane Gross 15 Jun
- "The idea of how to get through this by yourself makes my hair stand up." -Jane Gross 15 Jun
- "It’s pretty likely gonna be a friend (to take care of me at the end of my life)." -Jane Gross 15 Jun
- "My only personal solution to this is to be very conservative on the financial side. I don’t have children to pick up the slack."-J.G. 15 Jun
- "I’m not sure it’s as bad when it actually happens than to watch it happen." -Jane Gross on aging. 15 Jun
- "Rather than squeeze your eyes shut, you decide that there’s something interesting about it in the kind of spiritual life cycle sense."-JG 15 Jun
- "One of the great gifts of being a journalist is you get to poke around at ‘these’ things before they’re your things."-Jane Gross 15 Jun
- "I have seen what courage can be when there is no hope." -May Sarton in Jane Gross’s "Bittersweet Season" 15 Jun
- "You find out what you’re made of. If there’s any advantage to having a long slow dying its the time to get things right."-Jane Gross 15 Jun
Photo by Michael Lionstar.