As a social worker and teacher, much of my career has been devoted to helping individuals and families deal with the issues and emotions surrounding hospice, palliative and end-of-life care. A few years ago, I became involved with Death Cafe, a global movement that seeks to spark conversations and bring end-of-life issues into the light. It’s been a rewarding and enlightening journey, one that has given me great insight into the benefits of having open, frank discussions about death.
I originally found out about Death Cafe through a fellow social worker I follow on Twitter. The movement was started in the U.K. by John Underwood and Sue Barksy Reid who, inspired by the work of sociologist Bernard Crettaz, began holding gatherings of people to discuss death over tea and cakes. After reading more, I decided I wanted to try to start my own regular Death Cafe. Luckily, my family owns the Black Dog Coffee and Wine Bar in Lowertown, St. Paul, providing me with a perfect place to host the events.
A Place to Talk About the End of Life
Our Lowertown Death Cafe, which is usually an intimate gathering of between 4 and 12 people, quickly established a group of regulars. Usually, I begin the meetings with a check-in and some brief introductions. I try to bring along something to spark conversation, perhaps a story I’d read in the newspaper that week or a poem. Someone else might bring up a film or book that had recently sparked some thoughts and feelings about death.
From there, the conversation covers a wide range of topics that touch on the end of life. Often, people tell moving stories about their own lives. I remember a woman sharing a very touching story about communicating with her friend in another state as she approached death. Though she was never able to go visit, she said she felt a spiritual connection with her friend despite the distance between them.
An older gentleman who was involved with the Minnesota ALS Association shared stories of people he knew who were dealing with that disease. He also talked about how it had made him think about what he wanted to do in his own planning for death. He wanted a clear plan on how to deal with his estate and belongings to ease the burden on his family when he was gone.
I got a tip from another participant that it is important to think ahead and involve the next generation in end of life planning. As my siblings and I age, the kids, the nieces and nephews need to understand our wishes.
The conversation often flows in unpredictable directions, leading us to deep discussions on issues ranging from spirituality and religion to the debate over physician-assisted suicide.
The Last Taboo
In American culture, we’ve traditionally resisted talking about death, preferring to use vague euphemisms or avoid the discussion altogether. However, in the past few decades, issues surrounding end-of-life and hospice care are increasingly becoming part of the mainstream. This is partially due to the fact that Baby Boomers, the generation that has often guided the national agenda, are reaching the age where end-of-life issues are becoming more relevant, even urgent to them. There are a host of new social media resources that are raising these issues and encouraging people to bring them out of the closet. One I like lately is The Order of the Good Death.
For many years, the default attitude towards end-of-life in our country was that you do whatever it takes to stay alive. More and more, people are thinking about the quality of life. Many people believe that it’s better to focus on being comfortable and active as long as you can, as opposed to being alive and debilitated for a longer period of time. I think that the growth of the palliative care movement has helped advance that perception, and people are confronting it more directly as they age.
I think that’s where the Death Cafes are really valuable; it is a place where people can come to process their thoughts and feelings and have these conversations. Or, to be able to ask questions that maybe not everyone wanted to answer.
The Importance of End of Life Issues
While we often don’t feel comfortable discussing death and our end-of-life wishes with our families and loved ones, there can be tremendous benefits to doing so. There is interesting research that suggests that, if people have advanced care plans, living wills or have discussed their wishes for end-of-life treatment with their family, their survivors have an easier time processing their bereavement. There’s a tremendous burden that many people feel when they have to make a decision on behalf of someone else. It’s very difficult. So, having some guidance from that person confirms and validates the choices that people have to make during a difficult time.
This was true for me when my mother passed away. She had taken ill very suddenly and fallen into a coma. My mother was a Quaker and a few weeks before they had held an educational meeting to discuss their choices about the end of the life and their wishes regarding the use of heroic measures to extend their lives. While I already knew my mother’s wishes, it was powerful to have her community tell us, “She said this at the meeting; this was what she wanted” as a show of support.
On a societal level, there’s also the issue of the “medicalization” of death. In the U.S., we spend a great deal of money on care given to patients in the last year or months of life. A majority of Medicare dollars are spent on this very small portion of the population, often on therapies that will not benefit the patient’s health, to merely extend life for a few weeks or months.
Planning for End of Life
When examining your palliative care and end-of-life preferences, it can be hard to know where to start. Here are some resources that will help you and your family on the journey.
- Advance Directives. Here in Minnesota (and in most states), we have advance directives (or advance health care directives) that let you outline the health care approach and treatments you desire in the event that you become unresponsive or incapacitated. The Minnesota Department of Health details advance directives on this page and you can find a form here. Once you have identified your preferences, communicate those to your loved ones. This is the most important thing you can do to ensure that your end-of-life wishes are carried out as you want them to be.
- Online Resources. It’s often not easy to know how to start the conversation about your end-of-life choices. Thankfully, there are some websites that have a myriad of valuable resources and information. These include Honoring Choices Minnesota, CaringInfo (the official site of the National Hospice and Palliative Care Organization) and The Conversation Project.
- Think about quality of life, not just medical treatment. A lot of advance directives focus on which medical treatments you do or do not want to be performed when you are in an unresponsive state. However, I often tell people it’s important to build an end-of-life plan around values and quality of life. For instance, Ron Cranford, a neurologist who was instrumental in advancing choices in end-of-life care, described his own “Mr. Moo test.” Mr. Moo was a stuffed animal he used to lay on the floor and play with his dog. For him, as long as he could do that, he had what he defined as a good quality of life. Think about what’s important to you when crafting your advance directives. Also, it may be difficult to anticipate every medical treatment that will be available once the time comes.
- Have the tough conversations. It’s not easy to speak with your loved ones about death, which is why many of us avoid the issue altogether. However, doing it now just might bring a greater sense of peace to both you and your family.
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