How would you like to die?
Have you ever thought about it? Have you shared your thoughts with others? Do you have elderly parents that you worry about? Would you know their wishes for medical treatment should they become incapacitated, or terminally ill? Have they completed a Medical Advanced Directive , that doctors or hospital staff could refer to? How about your own Medical Advanced Directive? Do questions like these make you uncomfortable? Well, you’re not alone.

At this point, you have the option of reaching for the TV remote, and finding a good movie to watch – telling yourself there’s plenty of time to think about these things later – or you can read on about a world wide movement called Death Cafe, that brings people together to talk about death, dying and related topics in a safe, welcoming environment.
Your choice. No pressure!

For those curious enough to still be reading, you may be wondering:

So what are the origins of the Death Cafe and what is the real purpose of it? A visit to Deathcafe.com, not surprisingly, will give you some answers. Briefly, you will learn that The Death Cafe model was developed by Jon Underwood and Sue Barsky Reid in East London in 2011, based on the ideas of Bernard Crettaz. Lizzy Miles ran the first Death Cafe in the U.S. in Columbus, Ohio in 2012. Death Cafe is an event held at a location where, according the website, “… people, often strangers, gather to eat cake, drink tea and discuss death. Our objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’. A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counseling session”.

Personally, I got tired of sitting on the couch and watching movies, so I decided it was time to attend a Death Cafe meeting with my wife. It was held in a meeting room at the Gayton Pubic Library in Henrico County, in April of this year.
Our facilitator was Shelby Kirillin, a clinically certified Neuroscience ICU trauma nurse in Richmond, and mom to three young children. This was her third time facilitating a Death Cafe, and only the third one held in the Richmond area. The meeting was attended by over 20 people. Most were middle aged to older women, I would say, with a few younger ladies and three men, including myself. Many worked in the medical field in the Richmond area.

After a brief introduction to the Death Cafe concept and history, Kirillin divided us into three smaller discussion groups. She would ask us three questions, to get the discussion going. First question: “What was your first experience with death?”

She sat down at our table of seven. We all introduced ourselves, and then each of us responded to her question.

Several had experienced the death of a grandparent or older relative, when they were a child, and they recalled their feelings about it.

One man, who had grown up in Detroit, said his first experience was seeing a man shot to death in the street when he was just five years old.

Our group consisted of a VCU nursing student, two female chaplains from an upscale Richmond retirement facility, a palliative care worker, another hospital worker, and my wife and myself.
Kirillin next asked, “What brought you here tonight, to the Death Cafe?”.

My honest answer was, “Just out of curiosity”.

The two chaplains said that their job often involved counseling the sick and dying. They were there to hopefully learn about better ways to assist and comfort the dying and their family members.

One lady wanted to know how she could get her elderly parents to talk about their wishes for medical treatment and funeral arrangements. She said that every time she brought up the subject, they responded, “Are you trying to get rid of us?”.

I think our group all agreed that the topic of death and dying is often not comfortable for us to talk about, but that it’s important that we know what are loved one’s wishes are, and that they know our wishes, before we get too ill to express them.

Finally, Kirillin asked,”How would you like to die?”.

Some answered that they just wanted to go peacefully, without a lot of pain, surrounded by loved ones, preferably at home.

When it was my turn to answer, I was at a loss of what to say. I really hadn’t thought about it that much. I remembered an old work colleague, who once told me how he wanted to go, so I told his story. “My friend”, I said,”Once told me that when he knew the end was near, he would take one last airplane flight, shoot up with heroin, and then jump out of the plane, without a parachute!”.

Everyone had a good laugh, showing that the conversation needn’t always be dead serious (pun intended). Every once in a while, we heard laughter from the other two tables too, so we weren’t alone. That was just some of the discussion at our table that night.
Before we knew it, our scheduled time was up, and we all parted company. My wife and I agreed that our first Death Cafe was both instructive and stimulating, giving us much to think about, in our own lives.

Our Second Death Cafe

It was a typically sunny, hot August evening in RVA when my wife and I traveled to the north side to Stir Crazy Cafe, where another Death Cafe was scheduled for 6 to 8 PM. Once again our facilitator was Shelby Kirillin. We arrived early, and watched people as they came in, some asking if this was the Death Cafe meeting. One lady stuck her head in the door and asked if this was where they served the meat loaf. Kirillin politely told her “No”, but that she was welcome to join us. She declined, in favor of pursuing her meat loaf.

After most had found their way in, Kirillin started the meeting as usual, by giving us a brief history of Death Cafe’s origins in Europe and its purpose. We split up into four smaller discussion groups.
My wife and I sat at a table of six, and Kirillin joined us, making it nine. I looked around the room and counted a total attendance of 32. Again, the breakdown was mostly older women, with some younger ones, and three men, including myself. Everyone seemed up beat, talkative, and happy to be there.

Kirillin shared how she first got interested in the Death Cafe movement. For 18 years she’s worked as an ICU trauma nurse, where she has witnessed far too many “bad” deaths, but also some really “good” deaths.

A “bad” death would be when a terminally ill patient and family members were in denial and didn’t want to talk about or face what was coming. No one asks the patient what makes life worth living for him or her. Instead, well meaning family are determined to have medical professionals do everything possible to prolong life, if even for a short time. Doctors too may encourage complicated procedures, with questionable benefits for the patient. The result is often needless suffering, and the risk of not surviving the procedure which, at best, will only delay the inevitable.

Alternatively, a “good” death would be one where the family understands and faces the loved one’s prognosis. They know and respect their loved one’s wishes for end of life care. It then becomes easier to decide when to stop invasive medical treatment that has little chance to change the outcome. Focus shifts to making the process of dying a celebration of the loved one’s life, according to their own wishes, with family and close friends sharing memories and expressing what he or she means to them. There is still sadness but there is joy, too.

“How can we have more of the “good” deaths?”, Kirillin wondered.

She learned about doulas, who may be mid-wives for giving birth or for the dying. The roles were really related. We labor into life, at birth, and we labor out of life, at death.

She decided to train to become a doula. Around the same time, she learned about the Death Cafe movement. She became a facilitator, and organized what she believes to be the first Death Cafe in the Richmond area.

Kirillin says, “My goal continues to be to grow this community, not only in numbers but also diversity-age, race and religion.”

 

At our table, each person introduced themselves, and talked about their experiences with death and dying.

One woman, a Hospice nurse, told us she never said “No” to any of her terminally ill patients. If there was any way she could make their requests happen, she would.

Another lady was a massage therapist for cancer patients and their care givers. She worked at a non-profit company her brother had founded to help those suffering with cancer. She believed that relieving her clients’ pain, gave her even more satisfaction than they received. She told the story of giving an 85 year old man, dying of cancer, his first ever massage. He loved it so much – regretting only that he hadn’t tried it years earlier. The man passed away before his next scheduled massage, but the family thanked her for the joy she had given him.

A second women, who worked at the same non-profit center, was a patient advocate. She had lost her husband five years earlier, but he was able to experience a “good” death with her at his side. Unfortunately, some of his family members had a hard time with it. They never accepted that his illness was terminal and that his decision was to refuse further medical intervention, in favor of hospice care and dying on his own terms.

One woman told the story of her brother who was terminally ill. She was in Hawaii, on vacation when she got the news that his time was short. He insisted that she not interrupt her vacation. He stubbornly refused to die, waiting for her to return, after which he peacefully passed away.

Then there was the woman who had traveled 60 miles to come to the meeting. She had studied mortuary science, and worked at a funeral home for a while. She had lots of information about that industry.

She loved helping people understand their options and rights under the law when dealing with funeral homes. Some places , she noted, would take advantage of grieving families by showing their most expensive packages first, and not mentioning more affordable or un-bundled options. She recommended knowing the law, and always asking about other options and pricing. More affordable funerals are possible, if you want one, and are willing to shop around some. Things were changing, as consumers became more educated, she said.

One man’s job was to get consent and explain to families the procedures and paper work needed for donating the organs of a recently deceased family member. Many times this was after a sudden tragic loss of life, when families were grief stricken. Not an easy job at all. Only about 40 percent of the deceased had documented their wishes for organ donation, ahead of time, he said.

One participant commented that she could see and feel the connection the group had formed by sharing our experiences.

Time flew by, as we touched on several subjects. We discussed the attitudes, practices and rituals in different cultures and religions, surrounding death and dying. My wife described a ritual from the Buddhist tradition in Japan, where each family member would place an article of clothing in the casket so the deceased would have new clothes to wear in their next life.

Before we knew it our two hours were up, although we had much more we could have talked about.

After attending two Death Cafes, I can say that each one was very different. Each time Kirillin, as facilitator, got things rolling by having us do introductions, and throwing out a few questions to consider. After that, the group determined it’s own direction, based on the interests and experiences of the participants.

My wife and I were glad we came, and we’ll likely attend another Death Cafe, in the future.

I recommend giving one a try. You might be surprised at what you learn, and what you’re willing to share with a group of strangers.

I promise you won’t have to dress up like a Goth, and they won’t be serving poison kool aid there.

S J DuBreuil

FURTHER INFORMATION:

RVA End Of Life Network
https://www.facebook.com/groups/913688715387046/

Death Cafe
http://DeathCafe.com
https://www.facebook.com/deathcafe
https://twitter.com/DeathCafe

Shelby Kirillin serves as a End-Of-Life Transition Coach (Death Doula) for the terminally ill and their families, through her company Peaceful Passings.
https://peacefulpassings.wordpress.com/

Virginia Advanced Directive Documents
http://www.virginiaadvancedirectives.org

Books:

Being Mortal: Medicine and What Matters in the End
by Atul Gawande
Hardcover, 282 pages
Published October 7th 2014 by Metropolitan Books

When Breath Becomes Air
by Paul Kalanithi
Hardcover, 230 pages
Published January 12th 2016 by Random House Deckle Edge