The Game Of Death: You Win By Talking About Yours The Best

Game night in Medford, Mass., for players of “My Gift of Grace,” a new game meant to facilitate end-of-life conversations. (Gabrielle Emanuel/WBUR)

By Gabrielle Emanuel

It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.

Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”

As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.

This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.

Question 15: What music do you want to be listening to on your last day alive?

The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.

“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.

The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team. Continue reading

DIY Death: A Priest Opens Champagne, And Other Personal Funeral Moments

(Alex Kingsbury/WBUR)

(Alex Kingsbury/WBUR)

In case you missed Radio Boston yesterday, take a listen to this thoughtful conversation on do-it-yourself funeral arrangements, based on our wildly popular post on the topic (with over 3000 comments on NPR’s Facebook page; and over 70,000 CommonHealth Facebook shares so far).

Even though caring for our own dead loved ones used to be the norm (right up until the the last quarter of the 19th century) many people responded to our story on modern home funerals with a resounding: “Who knew?”

Transatlantic99 wrote, “I had no idea that this was allowed and will seriously consider staying out of funeral homes when the time comes.”

And a surprising number of commenters described their own experience with personal funerals, for instance, Boomer: “We have done two funerals from home to grave and will do it from now on…I am no longer afraid of dead bodies. The moment of death as each happened was a little traumatic. But the death care was peaceful, poignant, even humorous as we all worked together. Caring for our dead felt natural and right; fulfilling our responsibility. My family is agreed we dislike funeral businesses and having strangers with a vested financial interest involved with such a personal occasion. We dislike the exorbitant and unconscionable markups in costs at funeral businesses. The reaction I get from friends is, ‘I didn’t know that was legal!’ then, ‘How do I do it!?'”

The Radio Boston program touched on a number of topics we didn’t get into in the post, for example, what to do if a loved one dies in the hospital and you want to take the body home. (Short answer: it’s pretty much always legal, but some hospitals make it easier than others.)

Josh Slocum, executive director of the Funeral Consumers Alliance, a Burlington, Vermont nonprofit, was on the show answering questions and offering important context. “Human beings have been caring for their dead since we walked upright,” Slocum said, adding that when people actually confront death they tend to be much more emotionally resilient than they imagine. He said in the 10 years he’s been working with families in this arena he’s found that when a survivor cares for a dead loved one — that is, actually does something — it truly helps the grieving process and makes people feel a little less powerless. “Actually having something to do that was hands on,” he said, whether washing the dead body or making food for people coming to the house to pay respects, “was better therapy then they could pay for at a counselor’s office.”

My favorite comment came from a Belmont, Mass. priest, Patrick, who called in to the program.

Patrick said that several years ago, some parishioners asked for his help to try to figure out home funeral arrangements without using a funeral home. This family ended up “waking” their mother at home for two days, Patrick said, and the intimacy of the experience shifted his own thinking on death when his father died. “It changed my own take on what we would do as a family,” Patrick said. His father died at home in Stoneham after receiving hospice care. “Because I’d had this experience with parishioners, I didn’t feel that sense of rush that one normally feels at the time of death,” Patrick said. “My father died at 2 am, and we didn’t call the funeral home until that morning. We sat around his bed, we opened a bottle of champagne, we toasted him, we remembered him, we celebrated him.” This private family time, Patrick agreed, was invaluable.

So, readers, when you’re sitting around the Thanksgiving table later this week, why not raise some of these important issues with your family? How do you want to die? And how would you envision caring for loved ones after death?

DIY Death: Natural, At-Home Funerals And Their Boomer Appeal

WELLFLEET, Mass. — When 20-month-old Adelaida Kay Van Meter died of a rare genetic disease last winter, her father, Murro, gently carried her body out of the house to his wood shop in the pines near Gull Pond. He placed her in a small cedar box and surrounded her with ice packs. For three days, the little girl’s grieving parents were able to visit her and kiss her and hug her. Then, on the third day, after the medical examiner came to sign the last bit of paperwork, Van Meter and his wife, Sophia Fox, said good-bye to their baby, screwed the lid on the box and drove to a Plymouth, Mass. crematorium, where they watched the little coffin enter the furnace.

“We took care of Adelaida when she was an infant, we took care of her when she was healthy, we advocated for her in the hospital, we took care of her when she was sick,” her father said. “Why wouldn’t we take care of her when she was dead?” Sophia Fox added: “There was no way I was going to hand her over to some stranger at a funeral parlor where she’d be put in a refrigerator with a bunch of other dead bodies. This way was so much more natural. We saw the life leave her body and we were better able to let go.”

Death remains a topic that many of us would rather avoid. And when it comes to the actual nuts and bolts of caring for the dead, most of us tend to think it’s best — and furthermore, required by law — to let professional funeral arrangers handle the arrangements.

Well, it turns out that in most states it’s perfectly legal to care for your own dead. And, with new momentum to shatter longstanding taboos and stop tip-toeing around death — from “death with dignity” measures sweeping the country to projects promoting kitchen table “conversations” about our deepest end-of-life wishes — a re-energized DIY death movement is emerging.

This “personal funeral” or “home death care” movement involves reclaiming various aspects of death: for instance, keeping the dead body at home for some time rather than having it whisked it away; rejecting embalming and other environmentally questionable measures to prettify the dead; personally transporting a loved one’s corpse to a cemetery; and even, in some cases, home burials. Families are learning to navigate these delicate tasks with help from a growing cadre of “death midwives” “doulas” or “home death guides.”

When Adelaida Van Meter died last winter, her parents decided to keep her body at home for several days to say good-bye.

(Courtesy Murro Van Meter)

The DIY death movement is loosely knit, and motivations vary, ranging from environmental concerns to religious or financial considerations. (Traditional funerals can cost around $10,000 or more; when you do-it-yourself, the cost can be reduced into the hundreds, experts says.) Each case is fiercely personal — there’s no playbook — but they all share a very intimate sense that death should unfold as a family matter, not as a moment to relinquish loved ones to a paid stranger or parlor.

This Is Legal?

The highly personal nature of home funerals appealed to Janet Baczuk, 58, of Sandwich, Mass. So, when her 93-year-old father, Stephen, died in September, 2011, she said, “I thought, I’d like to do that for my dad.” “It’s more humane, more natural…and more environmentally sound.”

Baczuk and her sister washed their father’s dead body using essential oils, and got a permit to drive the corpse to the cemetery in their (covered) pickup truck. A World War II veteran, Stephen Baczuk was buried at Massachusetts National Cemetery in Bourne, where officials allowed his simple pine and cherry casket to be placed directly on the ground, covered by an inverted concrete vault with no lid, “like a butter dish,” Baczuk said. When her mother died back in 2006, Baczuk said, she had no inkling that home funerals were an option — but wishes she did. “I didn’t know it could be done,” she said. “I think a lot of lay people don’t know this is legal or possible.”

She’s right.

“When it comes to death, it doesn’t matter where you are on the scale of education or socioeconomics, many people are shocked to find that it’s legal to care for your own dead at home,” says Josh Slocum, Executive Director of the Funeral Consumers Alliance, a Burlington, Vermont, nonprofit that works on all aspects of funeral education, from helping consumers reduce costs to advocating on DIY methods. “And I think this speaks to how distant death has become for us in just over a century. In the late 1800s, even turn of the century, caring for the dead was as prosaic and ordinary as taking care of the children or milking the farm animals.”

Slocum offers this analogy: If a woman wants to run a restaurant, she needs approval from the health department and officials, of course, would be permitted to inspect her kitchen. But the health department would have no jurisdiction over the same woman’s own kitchen at home. “They cannot come in and tell her that her refrigerator is subpar, and they have no authority to tell her she is not allowed to cook dinner for her kids. They can’t compel her to order dinner from a commercial, licensed restaurant,” Slocum says. “The same holds with state funeral regulatory boards. Their job is to ensure public welfare and protect paying consumers. Bizarrely, however, many think their jurisdiction extends to telling families they must pay an unwanted third party funeral home to do something the family could do for themselves.”

Kyle Gamboa, 1995-2013 (Courtesy Kymberlyrenee Gamboa)

Kyle Gamboa, 1995-2013 (Courtesy Kymberlyrenee Gamboa)

What characterizes the DIY death experience is that it’s so very personal.  Consider these vastly different snapshots:

• In northern California, Kimberlyrenee Gamboa’s son Kyle committed suicide by jumping off the Golden Gate Bridge in September, three weeks into his senior year in high school. A seemingly happy 18-year-old with lots of friends and into competitive lasertag, Kyle’s death was such a shock, his mother said, she doesn’t know how she’d have managed it through a typical funeral. Instead, with help from her church and and home death guide, Heidi Boucher, Kyle’s body was returned to the family home one day after his death. Boucher washed Kyle and helped arrange the body on dry ice changed every 24 hours; she gathered information to fill out Kyle’s death certificate and managed all coordination with the mortuary. For three full days, Kyle’s body lay in the family living room in an open casket, not embalmed. During that time, day and night, surrounded by pictures and candles and flowers, all of his friends and family could say good-bye and remember his short life. For Kyle’s mother, that time was critical to her healing. Continue reading

Fresh Air: Existential Emptiness At The End Of Life

Listen to Fresh Air today for an insiders view of death and dying from a former critical care nurse who now counsels terminally ill people at the end of their lives. Some of those patients choose to die with an overdose of medications, which is legal in Oregon, Washington and Montana. Massachusetts voters will decide whether to legalize physician-assisted suicide in November.

Judith Schwartz, east coast regional coordinator for the nonprofit Compassion and Choices, tells Terry Gross that the top reason terminally ill patients say they want help dying is not because they’re in excruciating pain. She said people want to die when they can no longer do any of the large and small things they love. For some people that doesn’t matter, she said, but for the people it matters to, it matters a lot, and those patients stare straight into the “existential meaningless” of life. Continue reading

How We Die Now: Five New Stages, Family Included

Co-author Barbara Okun

In 1969, Dr. Elisabeth Kubler-Ross revolutionized popular thinking about how we die. Her bestselling book, “On Death and Dying,” proposed a five-step set of stages that a dying person tends to go through: Denial, anger, bargaining, depression and acceptance.

Now, a new book, “Saying Goodbye,” argues that it’s time for a new paradigm. With medical advances, dying now tends to be a much longer process than it was when the old five stages came out. And that presents new challenges for everyone involved.

CommonHealth spoke with co-author Barbara Okun, a professor of counseling psychology at Northeastern and a clinical instructor at Harvard Medical School.

So it’s time for a new five stages of dying to replace the now-classic Kubler-Ross stages?

First of all, she deserves a lot of credit for bringing the topic of death and dying out of the closet. And in those days, people diagnosed with cancer had weeks or at most a couple of months to live. So she was talking mostly about patients’ reactions. But it’s changed.

‘Death is more a process than an event, and illness and death are a family process.’

Of course there’s still sudden death, but we’re addressing death after the diagnosis of a fatal illness, when people can live years because of medical advances. Death is more a process than an event, and illness and death are a family process.

So given that, let’s look at your proposed five stages…

1. Crisis — Crisis is when you think there’s something wrong, and it can last a long time because you have to get several different opinions, and you go for tests and then you wait for the results. It can be a very anxiety-producing period because you don’t know whether you’re imagining things or there’s really something wrong. If it’s an adult, the person has to decide who they want to share the process with. If it’s a spouse or family member, everybody’s feeling that anxiety, and trying to find out what this might mean.

2. Unity — Unity is when you know. Some patients find it a relief: Even if it’s not a good diagnosis, at least they know what it is. And unity is when everybody pitches together to figure out what’s the best course of action in terms of establishing a medical team, a legal team, getting your affairs in order just in case, finding out what social services or options and entitlements are available. Family members typically put their differences aside and everybody comes together to be supportive. And it’s a time for people to organize and decide who’s going to be the point person for the doctors, who’s going to deal with the insurance company, who’s going to research different treatment options, who’ll help with estate planning and who’ll do the actual caretaking.

And then it starts getting long….that brings us to….

3. Upheaval — It’s like when people start thinking, ‘This has gone on so long, I can’t keep taking time off from work or asking my friends to take my kids to all their activities.’ Nerves start fraying and old resentments and conflicts re-emerge, and then people feel guilty because they feel ambivalent. In a way, they want it to be over with, and they feel guilty and ashamed but those are normal feelings. Continue reading