by John Byrne Barry | Jul 27, 2019 | End of Life
Kate DeBartolo is the Director of the Conversation Project, an initiative of the Institute for Healthcare Improvement (IHI). We spoke over the phone early this year.
Can you tell me about your personal journey to focusing on dying and end-of-life care?
I’ve worked at IHI (Institute for Healthcare Improvement) for 12 years, facilitating large scale adoption of best-practices in a clinical setting, so I had already dealt with a variety of healthcare topics before coming to the Conversation Project. Now I’ve been doing this six years, and I love the topic. I’m drawn not only for the experience of the person who dies, but how to live in those final years and how to support the bereaved.
There are also so many fabulous nurses and others working in this field. Addressing our mortality. They are such kind people.
Tell me about the Conversation Project, how it started, and what its mission is.
The Conversation Project was founded by Ellen Goodman, a Pulitzer-Prize winning columnist, who was the caregiver for her mother, who was unable to speak for herself in the final years, and who had never discussed her wishes for end-of-life care. All the decisions fell to Ellen.
After her mother’s death, Ellen got together with her peers, her colleagues in the media, along with healthcare and religious leaders, and learned that, unfortunately, her experience was not unique. In her conversations, she noted there were differences between what people called “good death” and “bad death,” and having conversations about end-of-life care was a common characteristic of the good deaths.
That’s when she came to IHI with this project. IHI is a nonprofit focused on how to improve health and health care worldwide. The Conversation Projects approaches things from two sides — we hope all wishes are expressed and respected.
So the patients have to say what matters most to them and the institution should respect what they say. Improvements depend on both parties.
We do not have a preference for a particular kind of care. But the idea is that we have these conversations, as Ellen says, around the kitchen table, not in the ICU. Doesn’t have to be the kitchen table, and maybe we should have called it the Conversations Project because it’s usually a series of conversations. We help people start them wherever they are.
We provide starter kits to help people get ready for the conversation. There are questions to help clarify what you want at the end of your life, and identifying who you want to talk to and when and where would be most conducive.
One way to break the ice is a simple statement: “I need your help with something.” Or, “I just answered some questions about what matters most to me at the end of life, and I want you to see my answers.” The important thing is to get started. Ellen also says, “it’s always too soon, until it’s too late.”
I signed up for your email list this morning and got an introductory email with a link to your starter kit. One thing that struck me was that 92 percent of people feel like having this end-of-life conversation is important but only 32 percent have it. Why do you think that is? How do we make that number higher?
The good news is that number has shifted. Not long ago, it was 27 percent. We’re talking about adults, over 18. So that means 12 million more Americans are having that conversations than a few years ago.
Why do you think so many are not having that conversation? To an outsider, it seems like there’s so much more going on with this end-of-life movement than there used to, but it also seems like it’s invisible to the mainstream society.
There are a variety of reason. One is they don’t want to offend people. Or they have other things that are more pressing. They may imagine it’s something they have to get an estate attorney to deal with.
There’s a growing movement, but there are also reasons that it’s now more acceptable than it’s been.
Remember the death panel framing from the 2008/2009 debate about the Affordable Care Act? That was in reference to policies that would allow Medicare to reimburse clinicians for conversations with patients about their wishes for care at the end of life.
Those conversations are covered by Medicare now, with bipartisan support. The popular culture is spreading the word — best-selling books like Being Mortal and When Breath Becomes Air. The short films Extremis and End Game were nominated for Oscars.
Baby boomers are seeing what is happening with their parents and they have opinions on whether they do or don’t want similar care for themselves. Keep in mind, too, that it’s only in the past few decades that we’ve had the technology to allow us to make many of these decisions. We aren’t well-versed in these conversations, because we didn’t used to have much say in the type of care we would receive.
I’m very much a supporter of your approach, and getting people to talk about death. But is there evidence to support that?
Absolutely there is. Now more than 50 percent of people who have these conversations report feelings of release and comfort. And it’s not just the person dying who benefits, but their loved ones too. Depression rates are lower after the loss of a loved one if they’ve had the conversation.
We do note that this topic historically resonated more with higher income, higher educated individuals, and we’re working to not further that divide.
How are you doing that?
One way we’re addressing that is to be sure that our team is representative of the audience we’re aiming to reach.
There’s been this progression from doing thing to, for, and now with. It used to be medical professionals did things to patients, then it shifted to for patients. Now we’re trying to make it with patients.
We now say here’s what I’m doing with you, not for you.
We’re also having conversations with the disabled community to make sure we’re getting it right for them.
I watched the video of Ellen Goodman talking about the genesis of the Conversation Project and how the experts you brought in said you needed to get outside the medical community into the broader culture and change the norm from not talking about the end of life to talking about it. How are you doing that?
For us, there are three approaches. One is building awareness with the public through traditional media, social media, podcasts, and so on. We keep trying to make our project more visible.
Second is we provide content and tools about related issues, like dealing with dementia. We have various questions to help figure out what people want. Like, on a scale of 1 to 5, are you concerned about too much health care, or too little care?
Third is we reach people where they live, work, and pray. We bring it to local libraries. We connect with regional leaders who can translate it to their area. We do a lot of work with religious congregations. And we do a lot of training. People learn from other people, then share it.
Another way is to not start with talking about death, but talk about what kind of life you want. How do you want to live your life as you approach the end? A lot of people understand the concept of health care proxy. If something unexpected happens to you, who’s going to speak for you? Do they know you want? Do you know what you want?
Sometimes it might be chocolate ice cream. One woman who was caring for dad, asked him what he wanted. He said as long I can watch college football and eat chocolate ice cream, I want to stick around.
(This ice cream and football quote, Kate said, should be attributed to its original source — Being Mortal, by Atul Gawande.)
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Find out more at theconversationproject.org.
by John Byrne Barry | Jun 27, 2019 | End of Life
On a spring afternoon at the Mill Valley Library, more than fifty people filled the Creekside Room to talk about death. Leading the discussion was Dr. Dawn Gross, UCSF Palliative Medicine Physician, who also hosts the KALW radio podcast series, “Dying To Talk.”
I spoke with her on the phone the week after the workshop.
Tell me about your journey to focus on death and dying.
When I went to medical school, I did so as a scientist. I had no interest in practicing medicine. My father was an administrator for Kaiser Hospital and he told me the doctors hated him. What kind of people would hate my father? I didn’t want to be one of them.
My scientific mentors steered me toward an MD and PhD, in immunology. When I finally started seeing patients, what I learned was counterintuitive. Don’t touch patients. That made me second guess myself.
I was on a clinical rotation when I first witnessed a patient about to die, and I was ready to burst into tears. I left the room, went into the hallway, and cried. The supervising clinician found me and said, “Don’t ever do that again. And don’t think I don’t go home and cry every night.”
But later that year, I watched a doctor leap onto the exam table next to her patient and put her arm around her. Oh, I thought, you can do that?
I picked the subspecialty of bone marrow transplants, because every single patient is a new immunological puzzle. I had no med school training in bone marrow transplant, and it was a steep learning curve. I started seeing people die and I was a deer in the headlights. We knew they were going to die, but we didn’t talk about it. I remember this one young man, seeing him on rounds. When we walked out of his room, my attending said, he’s going to die. I was thinking, what did he see that I didn’t? But what stayed with me most was that we didn’t tell him that he was dying.
We didn’t talk about it as a team after he died. It didn’t occur to me that we could do that. We didn’t have the language.
Around that time, my father became terminally ill, and that shifted my orientation.
I remember my father saying to me, “why is no one asking me what I want?”
He knew he was dying, and I realized that he had started an advance care conversation with me when I was a child. One day he had taken me to work, at Kaiser in Oakland. “Dawn, I want to show you something,” he said. “When people are walking down the halls, they aren’t looking at the signs, they’re looking down at their feet. I decided we should paint lines on the floor.” We stopped where the pink and green diverged. Pink was maternity. Green was intensive care. “Dawn,” he said, “I need you to know I would never want to go down the green line. I would much rather the time and money go toward my grandchildren’s education.”
At the time, I wasn’t thinking about the end of his life. I was thinking, oh, he expects grandchildren. I felt the weight of that responsibility.
For reasons I attribute to my father, I came to learn about this new specialty, hospice and palliative care. It didn’t exist when I was in medical school.
When was that?
2008 is when hospice and palliative care became a formal specialty. So fast forward, when my father died, I stopped everything. I was in the thickness of grief, and I had no resources. I reached out to the VITAS Hospice, and met the medical director, who became my mentor. “You clearly have a hospice heart,” he told me. He took me under his wing and trained me like an old-fashioned apprentice. I saw patients with him, watched his every move.
I felt like, this is what I’ve wanted to do all along. I found my people.
I’m very much a supporter of your approach, and getting people to talk about death. But is there evidence to support that?
There is. The palliative care field is looking at this. Asking questions like, did so-and-so die in accordance with their expressed wishes? The likelihood that that will be the case is correlated with whether they had conversations prior to their death. They found that those who did had better experiences than those who didn’t.
This is also true for the surrogate decision-makers, who often wonder if they made the right choices.
(Note: This study from the Dana-Farber Cancer Institute found that cancer patients experienced less anxiety and depression when they had end-of-life conversations.)
You work with patients who are dying. How do you balance compassion/empathy for your patients with taking care of yourself, not getting too caught up in loss. I know a cancer doc and one of her challenges is getting too emotionally invested in patients.
I reject that thinking, that physician burnout is because of being too emotionally involved. Yes, I was taught to separate my emotion, put boundaries between my patients and me, but I don’t agree with that approach.
So are we making progress in terms of getting more people talking about death? On the one hand it seems like there’s so many people and groups doing amazing things. On the other hand, most of it is invisible to mainstream society.
Well, we don’t always get a full house like we did in Mill Valley. We do see, however, that a lot of people are hungry to engage in this conversation. We have to address the challenge that for many, the word death is a turn-off.
We have to look at more accessible ways to explore end-of-life. For example, there’s this group, Reimagine End of Life, that’s hosting a week of events this fall in San Francisco. Art, music, comedy, spirituality, dancing in cemeteries, plus advance care planning. There’s a culture-changing movement going on. The first gathering was here in San Francisco in 2016. It brought together the entire spectrum of ages. There’s a millennial mindset. With the arts as an entry point.
We recently led a workshop at a high school in Oakland. Death Ed. Like sex ed, but for death. When we first approached the school, I expected they might be hesitant. But the kids were engaged.
We have to reject this assumption that death is an inappropriate subject for kids. We’re not born afraid to talk about death. We’re born curious. Kids look at their pets that have died and in that moment, they want to understand what it means. It’s how we as the adults in the room respond that makes the difference.
I remember when, as a child, our cat died, and my father told us we were fortunate that our cat came home to die with us.
Death is something sacred. Something that brings us together.
by John Byrne Barry | Apr 26, 2019 | End of Life, When I Killed My Father
I heard Ram Dass on the radio telling a story about a Chinese farmer who is too old to work in the fields any more. He sits on the porch watching his children tend to the crops.
One day, his eldest son lugs a wooden box to the porch. “We’ve got too many mouths to feed,” the son says. “Get in the box.”
The old man gets in. The son puts a lid on the box and drags it toward the cliff at the edge of the farm.
He hears a knocking from inside the box. Takes off the lid.
His father sits up. “Son, I know what you’re doing and why, but might I suggest that you lift me out of the box and throw me over the cliff. That way, the box will be there when your children need it.”
That’s not quite the theme of my upcoming novel, an assisted-suicide family thriller called Why I Killed My Father, but it’s in the same universe. Without intending to, I’m now knee deep in writing about death and dying.
A few alarmed friends have reached out and asked if I’m OK. I am. Yes, I am going to die just like everyone else, but I’m healthy and active now and I’m hoping for several decades more. But I have been devoting far more of my energy to thinking and talking and reporting about death, and it’s not as morbid as I might have expected. I know it’s a cliché, but it’s true. Being more aware of death — our own as well as others — can make life more meaningful and precious.
That said, I know that many people are not necessarily waiting in line to talk about death, let alone read a novel about death. One friend, upon hearing what I am working on, said, “I’ll pass and wait on your next effort.”
I was disappointed to hear that, but I get it. Which is why I’ve worked hard to make this book as entertaining as possible. I call it a “page-turner with a conscience” — it moves like a thriller, but without explosions. Well, I guess there are explosions of a sort.
If all goes well, the book will be out this fall. You can read Chapter 1 here.
(I’m seeking a few more beta readers. Let me know if you’re interested.)
by John Byrne Barry | Apr 11, 2019 | End of Life
You might think that talking about death would be somber, and yes, sometimes it was.
But there was plenty of laughter. One man introduced himself by saying, “Today is a banner day. Today I’ve lived longer than I’ve ever lived before.”
One woman told the story of a friend, who, when she learned she had inoperable cancer, said, “Oh, I don’t have to go to work anymore.”
One man said he was comfortable with the idea of dying, but he couldn’t get himself to move on the paperwork like his will and advanced directive.
We heard about a woman with a terminal disease who was determined to end her own life and planned her suicide so thoroughly, she even sought out a partner for her soon-to-be-widowed spouse.
Another participant told about a friend who was dying who asked to have his funeral before he died, and he did, with a marching band and a theater troupe performing skits, and then he died two days later.
We even heard about a new attempt to use virtual reality to help people prepare for death. You put this contraption on your head and experience entering into a different reality.
But there were also tears. One woman, whose mother had died a number of years ago, found herself unexpectedly crying. She had missed her mother’s death, and is still grieving over that.
This Death Cafe, on the last day of March, was hosted by Sukhasiddhi Foundation (pronounced suka city), a Buddhist meditation center in Fairfax, California. I had attended one in the same venue four years ago — see My First Death Cafe — and for almost everyone who came then, it was for the first time. This time, at least half had attended one before.
Death Cafe is a “social franchise,” which mean anyone can host one, use the name Death Cafe, post their event to deathcafe.com, and speak to the press as an affiliate of Death Cafe. The events are usually free or for a small donation. There’s no agenda, or intent to sell people on a product or idea. And there’s always coffee and cake. It’s a discussion group, not grief support or counseling.
The Death Cafe model was founded and developed in 2011 in London by Jon Underwood and Susan Barsky Reid, and built on the ideas of Swiss sociologist Bernard Crettaz, who opened a Café Mortel (Death Café) for an exhibition in his Geneva museum called La Mort à Vivre (Death for Life).
Pat Berube, a teacher at Sukhasiddhi, facilitated this gathering and said that since the Death Cafe started, more than 8,000 gatherings have taken place. All over the world, primarily the western countries, but in April, there are Death Cafes scheduled in Lagos, Nigeria, and Lázaro Cárdenas in Michoacán, Mexico. There’s even a Virtual Death Cafe meeting online on April 12 via Zoom.
Since I attended my first Death Cafe, the founder, Jon Underwood, died of leukemia at 44. I also learned that the man who led the Death Cafe in Fairfax four years ago had died as well. (I do remember that when he introduced himself, he said he had a terminal disease.)
What’s also happened in the past four years has been an explosion in the end-of-life movement. More organizations are promoting talking about dying. More doctors and medical practitioners are urging a change in how we approach death.
The Netflix documentary, End Game, gives viewers an intimate look at dying patients at UCSF Medical Center and the Zen Hospice Project in San Francisco.
Another documentary, Extremis, which was nominated for a 2017 Academy Award and 2 Emmys, explores end of life-decision-making in the intensive care unit
Dr. Atul Gawande’s Being Mortal, published in 2014, has been hugely influential. Pulitzer-Prize winning columnist Ellen Goodman founded the Conversation Project to make it easier to initiate conversations about dying.
This fall, in San Francisco, a group called Reimagine End of Life, will be hosting its second gathering exploring death through music, comedy, dance, and the arts.
There are more than 100 Death Cafes scheduled this April, from Denmark to New Zealand to Texas. Sukhasiddhi has hosted more than ten in the past five years.
At the Sukhasiddhi gathering, after introductions, we settled into discussions at tables of four or five, and we took turns talking about why were there. I spoke about my mom dying last year, at 95. But more about her decline—how she lost her sight, then her mobility, then her mind. We had a small crowd on a sunny and gorgeous Sunday afternoon, but it was a very moving, intimate, and profound experience.
I left feeling grateful.
You can find a Death Cafe near you at deathcafe.com.
by John Byrne Barry | Mar 13, 2019 | End of Life
No one wants to talk about death, right? Most of us would rather talk about anything, even sex or money.
So it was somewhat of a surprise to arrive at the Mill Valley Library on a March afternoon to find the Creekside Room packed for a “Plan Well, Live Well, Die Well” workshop. (Somewhat of a surprise? Well, Mill Valley.)
The workshop was the first collaboration between the library and Mill Valley Village, a volunteer membership organization that helps older adults remain active, independent, and connected. It was led by the three founding members of Dyalogues — a Bay Area- based company dedicated to facilitating conversations about death and what matters most in our lives.
UCSF palliative medicine physician Dawn Gross, business development consultant Nancy Belza, and marriage and family therapist Paul Puccinelli kicked the workshop off by introducing themselves, describing the goals of the workshop — for participants to “have what they want, by starting with the end in mind” — and then passed out decks of cards.
We each received a deck of 43 cards, and we were to imagine that we were seriously ill, near the end of life. Each card had a wish. Such as:
— To die at home.
— To be clean.
— Not to die alone.
— To forgive (or make amends).
— Not to lose my dignity.
We were instructed to go through our cards and put them in three stacks — what we want most, what we pretty much want, and what maybe isn’t all that important.
(It was a challenge for me not to put almost all of them in the first pile, and I’m sure that was the case for many of us.)
Then we were asked to take that first pile, the cards with the wishes that resonated most for us, and narrow it down to three.
I picked: To be at peace. To be with people I love. To keep my sense of humor.
(I figured that if I’m at peace and I have my sense of humor, I can weather losing my dignity and not being clean.)
Then we worked with a partner, or two, to dig deeper. We were supposed to ask questions to help our partner get as clear as possible about what he or she wanted.
Dawn and Paul modeled the conversation for us. One of Paul’s wishes was: To be with people I love. Dawn asked him who those people were. Paul said his wife, his two children, and his dog.
Dawn asked, what does it mean, to be with them?
I’m in a bed at home, Paul said, and my family is being normal and I’m part of it. (Then came a discussion about whether the dog would be allowed on the bed — yes — and how some hospitals now allow animals for end-of-life patients. One participant also mentioned that there’s a way, through the SPCA, to arrange care for your pets after you die.)
We had half an hour to discuss our wishes with our partner(s). My partner and I got through two of our cards. In regards to my wish to be at peace, she asked me if I was at peace now, and I said yes, but not as much as I could be.
One of her wishes was to forgive (and make amends), and when I asked her to tell me more, she said there were people who had wronged her who were no longer in her life, but they were, “still renting space in my head.”
We both noted that what we wished for on our deathbed was just as true for the present, but we didn’t grasp until the wrap-up that that was intentional. That what we wish for the end of our life is generally what we want today.
“Take home number one,” said Dawn, once we finished our discussions. “This is about now. You don’t have to wait to have these conversations. What matters to you as you imagine the end of your life most likely matters to you now. If there’s a playlist of music you want to hear when you’re dying, don’t you also want to listen to it now?”
She did remind us, however, that what we want evolves. “My husband and I play this game every year on our anniversary. It’s one of the most intimate conversations of the year.”
With people we know well, she suggested we play the game in reverse. Instead of sorting the deck for ourselves, we sort it for our partners. See how well we know them.
She uses the cards with her patients, some of whom are too weak to hold conversations. She holds them one by one, sees if they nod.
The wish cards are not available yet — we were the first to use this particular set — but they will be later this year. But, of course, you don’t have to wait for a deck of cards to talk about your wishes.
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To learn more about Dyalogues, go to dyalogues.com/. You may also be interested in listening to Dr. Gross’ KALW radio podcast series, “Dying To Talk.”
To learn more about Mill Valley Village, and its parent organization Marin Villages, go to: marin.helpfulvillage.com/.
To find out more about future workshops like this, and other wonderful programs at the library, sign up for the Mill Valley Library email newsletter at millvalleylibrary.org. (That’s how I found out about this workshop.)
Also, the San Francisco Public Library has just started a new series called “Death & Dying: Rest in Peace,” with a free program every month through September.
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