Facing Death, With "Being Mortal"'s Dr.-Author's Help - Atul Gawande

Philadelphia Inquirer, Sunday, May 22, 2016, CURRENTS section, Page C4, Opinion/Commentary:

Facing our last chapter, with doctor-author’s help

Sally Friedman is a writer in Moorestown

File Photograph

At arecent reunion with my “besties” from childhood — two sets of sisters — we covered a lot of ground: reflections on who we are now, who we were way back when, our parents, our worst and best romances.

And then we addressed the elephant in the room: death.

Only with our closest and most trusted friends does this come up. One doesn’t ask a casual colleague, “So what do you think you’ll die of?” Or “What’s in your advance directive?”

But with four women who grew up cheek to jowl in Philadelphia rowhouses, and who have shared every life passage, even death is invited into the conversation.

After all, we know one another better than almost anyone else.

So on a spring afternoon, we shared our visions of dying, now that the youngest of us is in her early 70s, and the oldest was celebrating her 80th birthday on that very day. And an 80th birthday tends to inspire awe, disbelief, and, yes, inevitably thoughts of endings.

So I assumed, a week later, that I was definitely ready to face an evening based on Being Mortal, the wonderful, must-read book about how medicine and mortality inevitably connect — and sometimes collide.

The doctor-author, Atul Gawande, has been hailed for encouraging us to face the inevitable with what critics and readers have lauded as riveting honesty.

I convinced my husband that we had to go to this viewing of a documentary inspired by Gawande’s book and produced by Frontline. He was not delighted. And, frankly, neither was I.

But we both recognized that this was a higher priority than flopping down in the den to watch the political shenanigans that are our daily fodder on CNN.

It wasn’t easy to walk into a Cherry Hill synagogue where Samaritan, a pioneering hospice in Burlington County, had arranged for several of these community gatherings. Definitely missing was the usual social buzz, even before the lights dimmed and the screen came on.

Then the silence grew dense.

We were watching several families on that screen as they traveled through the process of watching a loved one die. Yes, die. No euphemisms like passing away in this film.

For a while, I didn’t even look at my husband. Nor did he turn to me. We sailed separately on this voyage into the pain of loss as we watched husbands and wives move through the most painful of passages of all: saying those unimaginable goodbyes to one another.

One unexpected insight was what doctors themselves were going through as they faced what for some is the ultimate medical defeat: not only losing a patient, but also being unable to find a way to tell that patient the unvarnished truth.

One challenge for some of these doctors is finding how to take away false hope, yet preserve — well, what? That was the question. When hope is gone, what is left?

When we watched a 34-year-old mother on that screen who had managed to live through a pregnancy while an aggressive cancer was destroying her lungs, who had held her baby in her arms, and knew all the while that she would not live to see that baby walk or talk, what is there to say?

That’s the vignette that finally got me to reach for my husband’s hand — and not let go.

Certainly not when a grandmother had dreamed in her hospital bed of taking her grandchild to Disneyland.

And then to have that dream snatched away by the miserable result of one of those scans that “reads” our bodies and sees that plan — and so many others — obliterated. Yes, unbearable.

There was so much pain in the Being Mortal screening. And so much wisdom.

Death is our universal life experience. And this young surgeon, this remarkable Atul Gawande, wanted us to accept that. He wanted to have doctors find wise and compassionate ways to guide us to our own answers. He wanted us to think about how we wanted that last experience to be.

After the screening, there was initially just silence. The kind one seldom experiences in a crowded room.

And once we had caught our communal breath, there was a conversation with a panel of social workers, physicians, and even those who train medical students in one of the most essential courses: not anatomy, not physiology or pathology, but how to help a patient die.

For the healers — and for us — it’s the ultimate lesson of being mortal. pinegander@aol.com

Samaritan has scheduled another showing of
“Being Mortal” at 2:30 p.m. on Thursday, June
16. It is free and open to the public. For more information, visit www.samaritannj.org.

Nursing Homes Opening Up About Death, Finally, Slowly

Philadelphia Inquirer, Sunday, March 28, 2015, Front Page story:

Don Eisenhauer leads residents in a hymn at the Sanatoga Center in Pottstown. Sanatoga is among the long-term care facilities addressing death more openly. BRADLEY C BOWER / For The Inquirer

A LIVING ENDING

Nursing homes are being more open, for residents and staff, about death.

By Stacey Burling INQUIRER STAFF WRITER

   Even in nursing homes, where hundreds of thousands of people die each year, death has long been a touchy subject.

   Administrators thought they were doing residents and staff a psychological favor by whisking dead bodies out back doors and carrying on as usual. It seemed too depressing to think about how many people were leaving and how many would follow.

   Attitudes are beginning to change, though, thanks to a greater emphasis on bringing meaning and individual choice — in other words, more life — to those last years in long-term care.

   Rather than assuming they knew best, nursing-home leaders also started asking residents like Mary Grace Dippolito how they feel.

   Dippolito, 74, attended this month’s memorial service for people who had died    — there were three this time — at her nursing home, Sanatoga Center in Pottstown.

   Dippolito, who has been at Sanatoga a year, says she finds such events uplifting. It’s important, she said, to say out loud that she and her neighbors matter to one another. She likes to be with the group, nodding together at shared memories.

   “Such things do happen to all of us,” she said, “and it’s nice to acknowledge: ‘I knew you. I was happy to know you. Now I’m going to say goodbye.’ ”

   She also finds it comforting to know that the group will talk about her one day. “I would like them to acknowledge that they knew me,” she said.

   Sanatoga is among a growing number of long-term care facilities that are addressing death a little more openly.

   Some display plaques in common areas to memorialize the newly departed. Some facilities encourage residents and staff to write messages to grieving families. Some place a rose on the empty bed. Staff and residents may flank the stretcher as a body is wheeled out — by the front door. Some ring a “prayer bell” when a resident dies. A few even give staff members closest to the deceased a day off.

   At Spring House Estates, a continuing-care retirement community in Lower Gwynedd, there are 30 to 40 deaths a year in the 96-bed skilled nursing facility.

   Families sitting vigil are given snacks, poetry, and care items such as lip balm. A little angel hangs from the door. When a resident dies, the body is draped with a white memory quilt made by independent-living residents. Doors stay open as the body is taken out. Once the funeral-home employees leave, the quilt tops the empty bed.

   “This is a part of life and we honor that,” executive director Donna Thompson said.

   Sanatoga is likely to be the last home for about half of its 130 residents. The other half come for limited rehabilitation stays. Last year, 21 residents died there. At any given time, eight to 10 nearing the end of life are receiving hospice services.

   Executive administrator Scott Centak said that, historically, nursing homes thought of death as something that primarily affected families, not other residents or staff.

   “ ‘Mary passed away. Mary’s family is grieving,’ ” he said of the old perspective. “But what about Mary’s friends here? What about the staff here?”

   1.6 million Americans

   Nursing homes and assisted-living facilities are home to about 1.6 million Americans. How much attitudes about dying have really changed there is hard to know. Industry leaders claim wide buy-in. Academic experts, though, still see wide variation.

   “I’m not sure there’s been a huge conversion,” said Susan Miller, agerontologist and epidemiologist at Brown University. Still, she said, awareness of the need to mourn has increased in recent years.

   Sarah Matas, resident services administrator at Barclay Friends, a West Chester continuing-care community, recalls being a hospice social worker at a Delaware nursing home in the 1990s. As she sat with a patient who had just died, “someone took that person’s name out of the slot in the door,” she said, her voice still angry. “They literally weren’t cold in their bed yet.”

   Such a hush-hush approach may have been well-intended, but residents were left to wonder what had happened to their friends and, more important, what would happen to them.

   Kathrin Boerner, a psychologist at the University of Massachusetts Boston, said residents find it “between ridiculous and offensive” when deaths are not acknowledged. The implication is that their lives don’t matter much, that “that’s how you’re going to be wheeled out, while nobody’s looking.”

   A thorny issue

   It’s easy to see why the issue is thorny. Many residents have dementia. How much can they understand? What’s the point in upsetting them?

   Then there are privacy regulations, which some blame for one of the most disturbing scenarios. A resident gets sick and disappears. Did she die? Is she in the hospital? Did she move? No one knows.

   Barclay Friends addressed that problem by asking residents if they want neighbors to be informed if something happens to them.

   Some experts worry that constant exposure to death is harder for staff than for residents. Boerner said many employees receive very little training in how death occurs or how to handle it. “The staff is utterly unprepared to deal with it,” she said.

   Even small steps, like giving aides who worked closely with a dead patient the news by phone before they come to work and see the empty bed, she said, make workers feel better.

   “If you want the staff that cares for that person to be caring and compassionate, you have to ask yourself what does the staff need to be able to do this,” she said.

   Michael Lepore, a sociologist at Research Triangle Institute, said nursing homes’ reluctance to talk about death reflected societal attitudes.

   “I don’t think it’s fair,” he said, “to blame nursing homes for not offering a greater awareness of death and dying when it’s certainly a microcosm of our society, which also doesn’t do that.”

   Hospice drives changes

   Industry experts say changes are being driven by the growing presence of hospice care in longterm care facilities and by the culture-change movement, which promotes homelike, individualized care. It emphasizes what patients want and can contribute in their last years.

   Genesis Healthcare, which operates Sanatoga, has a four-year-old program it calls Adding Life to Years. It reminds staff of the long lives full of family, work, and passions that residents had before they had to leave their homes.

   ACTS Retirement-Life Communities, which owns Spring House, has its own hospice program , which many of its independent-living residents serve as volunteers.

   Marian Schurz, corporate director of home and community services, said residents want to hear about hospice and end-of-life planning. She hopes to hold meetings modeled on “death cafes,” trendy social gatherings where people talk about death and mortality.

   “They are hungry. They want to talk about it,” Schurz said. “They have questions.”

   Sanatoga residents chose wind as the theme for the March memorial service. It was fitting for a breezy St. Patrick’s Day. The wind, said Chaplain Don Eisenhauer, is messy, unpredictable, uncontrollable.

   “It’s areminder that we don’t really have a say over when our loved ones are going to die,” he told the group. “We face the moment and we deal with whatever comes. … It helps us to make the most of the days we have.”

   About half the crowd stayed as recreation director Johanna Applegate, acting on a resident’s suggestion, displayed a sample black armband residents and staff might wear to show they were mourning. They liked it. She updated plans to make a pale pink patchwork quilt that will drape the bodies of residents as they leave the building. She added that Mary Ann Luft, vice president of the resident council, will visit the roommates and families of residents who die.

   Luft, 67, who was disabled at birth and has lived at Sanatoga about three years, has pushed for more openness when her friends are nearing death. “I was pretty close to a couple of them and I would have loved to be able to say my goodbyes when they were here in the flesh,” she said.

   She wants her only memorial service to be at Sanatoga.

   “I’m prepared, yes. I have the Lord as my savior and I know that I’m going home with him,” she said. “My family knows I loved them. I have apologized to everyone I might have hurt, so I’m ready to go.”

   Some experts say the elderly can educate others about coping with life’s end.

   “These old people, 80 and beyond, have alot to teach us about how to maintain resilience, because a lot of them are very good at dealing with loss,” said Renee Shield, a Brown University anthropologist.

   Sanatoga’s Centak said that residents are asking for more opportunities to express their wishes, now that they know the staff is listening. The rituals around death are, for the first time, a true collaboration.

   “Isn’t that a legacy in itself?” Applegate asked. sburling@phillynews.com  

   215-854-4944 @StaceyABurling www.inquirer.com/health_science  

Don Eisenhauer leads residents in a hymn at the Sanatoga Center in Pottstown. Sanatoga is among the long-term care facilities addressing death more openly. BRADLEY C BOWER / For The Inquirer

Peggy Baumann reacts to the singing of a hymn during a memorial service at the Sanatoga Center.

Staff member Stacy Omar hugs a resident during a memorial service at the center. An administrator said residents were asking for more opportunities to express their wishes, now that they know staff is listening.

Johanna Applegate, recreation director at Sanatoga Center, with residents at a memorial service. Such services are apart of a more open attitude to death at some nursing homes. BRADLEY C BOWER / For The Inquirer

Ellen Dengler holds the program at a memorial service. Death “is a part of life, and we honor that,” an official at one nursing home said.

A Card Game About Dying Well: My Gift of Grace-Just DO It: Talk About Death

Let's talk about death!!  Just do it:  it's a good thing:

A card game for dying well

2 COMMENTS

The Action Mill, manufacturers and designers of My Gift of Grace. Photograph of the designer and partners at their office at 1219 Vine St. in center city Philadelphia on Monday morning December 16, 2013. From left they are Georgia Guthrie, designer, Nick Jehlen, partner (computer monitor) Rob Peagler, partner and Jethro Heiko, partner. ( ALEJANDRO A. ALVAREZ / STAFF PHOTOGRAPHER ) DN

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Stacey Burling, Inquirer Staff Writer

LAST UPDATED: Sunday, December 29, 2013, 2:01 AM
POSTED: Saturday, December 28, 2013, 9:47 PM

Americans don't talk nearly enough about death, and that causes a host of problems at the end of their lives.

A Philadelphia design group is trying something unusual to get people to open up before it's too late: a card game.

Its project - a deck of 47 sky-blue cards called "My Gift of Grace, a Conversation Game for Living and Dying Well" - uses questions to get friends and family talking about funerals, disability, forgiveness, and philosophy. Players don't know till the very end whether they will win by expressing gratitude or earning it.

"I just love the fact that they're using this creative medium, a game, to foster conversations in a reasonably lighthearted and certainly very supportive way," said Ira Byock, a nationally known palliative-care expert whose most recent book, The Best Care Possible, is about end-of-life care. Byock was among 436 donors who pledged a total of $41,338 at Kickstarter to get the game off the ground. He also can take credit for the tagline and its mention of life in addition to death.

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Byock likes the fact that the game, which was created with input from local palliative-care physician Karl Ahlswede, doesn't just ask about pain and suffering, as many legal documents do. It also asks about positive experiences that can give meaning to our last months. "What I like about this game is that it's really focused on the personal, experiential side of caring for another," he said.

The cards are the work of Action Mill, which describes itself as a "human-centered design firm." Three partners - Jethro Heiko, 40, whose background is in "bereavement and community organizing"; Nick Jehlen, 42, a designer; and Rob Peagler, 48, whose previous work was in design and strategy - along with Georgia Guthrie, 30, a designer, created the game.

Jehlen said the group, which tries to find ways to express complex ideas tangibly and practically, is now focusing entirely on improving conversations and decision-making late in life.

My Gift of Grace was a winner in the California HealthCare Foundation End-of-Life Challenge. Action Mill started shipping decks to its backers this month and is now taking orders online.

Action Mill, with a quirky office just north of Chinatown, had previously done work for the State of Vermont and the Alaska Wilderness League.

For the Alaska job, it had 12,000 students and teachers flying kites representing migratory birds to help those in the lower 48 understand that some of our avian visitors were born in Alaska. The league's executive director, Cindy Shogan, said her group was still using some Action Mill ideas and that its campaign "inspired positive actions across the country in a fun, approachable, and positive way."

After interviewing many people who work with patients at the end of life, Action Mill decided this was fertile ground for its inventive approach. "There's a huge need," Heiko said.

The company did not set out to create a game. The principals thought about what's going wrong now. End-of-life planning centers around living wills and who gets medical power of attorney. It can feel uncomfortably formal and legal.

"If the challenge is conversation and people aren't having it," Heiko said, "don't give them a document. Give them a conversation."

The group first thought about where families talk: the kitchen or dining room table. It then thought about activities that facilitate conversation and are familiar. That's when the thought of cards began.

The cards are numbered. They are written in simple language, but the questions are not simple. Some examples: "Think of the last disagreement your family had. How was it resolved?" "If you had one day to say you were sorry to anyone you wanted before you died, who would be first?" "Write your own epitaph in five words or less." There are practical questions, too, about cremation vs. burial, who should get your stuff, what you'd like in the memorial service, and whom you want to make decisions if you can't.

Everyone answers the same question at the same time and shares the answers if they want. The game ends when the players want it to. Peagler said most games last 90 minutes to 21/2 hours.

Players can share one deck and write down their answers. Or, in the "deluxe" version, each player has a deck and writes answers on the cards. These can then be left for family later. A single deck - made entirely in America - costs $24.95. Bigger orders are $19.95 a piece. The online store is athttp://actionmill.com/.

Players give gratitude chips to reward answers they like.

It doesn't sound very competitive, but the Action Mill folks say people can get pretty excited about those chips. As for whether dysfunctional families should steer clear, they said most groups can handle these topics. "This is safer than Monopoly," Peagler said.

Guthrie, the youngest member of the team, said she was not all that thrilled about the Action Mill's new emphasis on death. Then she talked with Ahlswede, who said that if her family did not know her wishes and had to make decisions for her, it might suffer emotionally and financially.

Before that, she'd thought of advance-care planning as being for herself. He made her realize it was for her family.

Is the game fun? The designers say there can be tears, but that people also enjoy the conversations.

"I haven't been in a game yet where there hasn't been laughter," Jehlen said.

He said that players like the challenge of it. "People get enjoyment from tackling difficult things and especially from tackling difficult things together," he said.

Jehlen said that one unexpected benefit is that learning to talk about the difficult subjects in the game had helped him confront other problems and had changed his perspective. "It's improved our lives immediately and continues to," he said.

Byock thinks that many people have a "veneer of denial and avoidance" when it comes to discussing death, but inside, they're actually quite eager. Sharing their thoughts, he said, can help them and the people they love.

"It truly is a gift to give one another," he said. "The conversation itself is a gift that will keep on giving at some of the most difficult times."

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sburling@phillynews.com

215-854-4944 @StaceyABurling

www.inquirer.com/health_science