Death Talk
Planning our journey of dying
In 2010, I worked at a small branch campus in the older part of my city. Housed in a former mall built in the 1970s, no windows existed, and despite the new paint and new flooring, the odors of its prior use lingered. It felt suffocating, so I headed out for a walk on my lunch hour each day. Behind the building was the oldest and largest cemetery in the county, lined with towering Douglas firs and a carpet of impeccably maintained grass. I intended to exercise, walking quickly to get some cardio, but the headstones slowed me down, the epitaphs enticing me for more consideration, much like a headline for an article.
Like many large cemeteries, it hosted the remains of hundreds of people for over 150 years. I started my daily walks in the newer sections, slowly working toward the oldest burials. There were forgotten, seemingly tragic stories buried here. The older section reflected a time when women died at a young age, perhaps while giving birth. Smaller headstones indicated a child’s burial; children died frequently from diseases that medicine can now prevent or treat. I remember staring at a group of headstones from one family: the mother and three children died in 1919 -1920. A little research and I pondered whether they may have died during the Great Influenza epidemic of 1918-1920. The husband/father lived decades beyond them, and my heart wanted to ask how he had endured such loss.
How do people learn to accept death and move forward with life?
Death is always part of life, and I think that people’s ability to accept it is directly related to their familiarity and experiences with dying, death, and grief. I had limited experience with death and dying at this point in my life. My parents were only children; no aunts, uncles, or cousins meant no large holiday gatherings, weddings, or funerals. I was thirty when my maternal grandfather died. He had a heart attack and stroke and should have died (perhaps did die - a murky detail in the EMT world) in his small apartment in a senior living apartment complex. But his companion called the EMTs, and he was magically (because I don’t know what the EMTs actually did) brought back to life and taken to the hospital, where he was intubated and existed via machines for several days. My grandfather, an intelligent and loving man, had completed a will but no DNR (do not resuscitate) or medical directive for extended care in these circumstances.
His only child, my mother, was asked to decide whether to remove him from assisted life-prolonging care. The doctor explained that he had suffered significant damage to both his heart and brain and would likely die soon after being released from the healthcare technological apparatus. But, and this is the hope we listen for, he could survive for an unknown amount of time.
During those days, I sat in the family waiting room with my mother as she wept and agonized over what to do. I discovered that she and her father never talked about how he wanted to die or under what conditions he wanted to live. She finally agreed to remove him from the machines, and he survived for several weeks. The hope of spending more time with him became a tragic comedy: decades of his memories had disappeared. He unabashedly flirted with his caregivers, winking at them and teasing them about a potential date. He didn’t recognize his daughter, was often terrified of his circumstances, and kept asking where Maggie, his deceased wife, was. At one point, I explained that she had died, and his face crumpled in sadness and grief, reliving his most significant loss.
This is not a good way to die.
In our modern culture, we have outsourced our healthcare and our dying to the for-profit medical industry. More of us live longer because of vast improvements in disease prevention and treatment, regular access to medical testing and care, and advanced technology. Our families are separated and distributed throughout the globe. We no longer have regular exposure to dying and death within our families. Many of us fear death because the loss and absence of a loved one are too much to bear. Death is emotionally painful for the dying; we fear leaving our loved ones, and we fear the grief our death will cause.
As a culture, we are getting better at preparing the administrative paperwork for the end of our lives, but we deny the possibility of death until we are older. We know we should have a will, legal advocates, and documents to manage our assets and healthcare.
“According to a new Caring.com survey, only 42 percent of U.S. adults currently have estate planning documents such as a will or living trust. For those with children under the age of 18, the figure is even lower, with just 36 percent having an end-of-life plan in place.” By age 72, 81% of US adults have their paperwork in order.
Medical professionals report how emotionally unprepared many families are when confronted with life-prolonging medical care and the possibility of the sudden death of loved ones. It appears that few of us have honest discussions about how we want to die. I suspect that we spend more hours planning a one-week vacation than we do about our journey of dying. There are several ways to begin the vital conversation around dying and death.
Death Cafes
The first Death Cafe was started in 2011 in London and has sponsored almost 20,000 Death Cafes in 93 countries. A Death Cafe is an organized gathering of people who want to think about and discuss dying and death. From the deathcafe.com site: “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.”
In some ways, I think it might be easier to talk about death with strangers than with family. My attempts to speak with my mother and stepfather about the end of their lives were met with a lack of seriousness and jokes on my mother’s part and silence on my stepfather’s part. They finally completed some of the legal paperwork, but my stepfather refused to complete a DNR or to outline what potential treatments he wanted to sustain his life. He dismissed all my pleas with a wave of his hand, telling me, “It’s up to my Creator.”
Except in most cases, it is not up to the Creator. Over half of us will die in a hospital or care center. Some laws and ethical obligations require medical treatment unless a DNR is provided. Medical professionals are in the business of prolonging life, and technology has made it easier to pursue living over dying. The reality is dying is emotionally, physically, and ethically more complicated in our modern lives. Talking about how we want to exit our lives gracefully, on our terms, is more crucial than ever.
Death Cards Game
Another tool is the Death Cards deck, marketed as a fun party game. Here’s the description: There are 112 cards with a mix of multiple-choice and open-ended questions guaranteed to spark lively discussion around the topic of death. Play with partners to try and predict each other's answers, or all together in a group. No matter how you play, you'll learn some new things about your friends, your family, and likely yourself.
I wish I had known about these cards when my mom was alive. They would have introduced ideas and scenarios for consideration and discussion in a light-hearted way. My mother feared death, so she avoided discussing it. I plan to request that my library system purchase several decks for patron checkout.
If this is a challenging issue to consider or discuss, start with this simple plan for organizing a “good end of life.” Watch her 5-minute TED talk and review the worksheets.
Good End of Life- Worksheets
When Death Comes by Mary Oliver
When death comes like the hungry bear in autumn; when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut; when death comes like the measle-pox
when death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering: what is it going to be like, that cottage of darkness?
And therefore I look upon everything as a brotherhood and a sisterhood, and I look upon time as no more than an idea, and I consider eternity as another possibility,
and I think of each life as a flower, as common as a field daisy, and as singular,
and each name a comfortable music in the mouth, tending, as all music does, toward silence,
and each body a lion of courage, and something precious to the earth.
When it's over, I want to say all my life I was a bride married to amazement. I was the bridegroom, taking the world into my arms.
When it's over, I don't want to wonder if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened, or full of argument.
I don't want to end up simply having visited this world.
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Have you participated in a Death Cafe, or played the Death Cards game? Have you been successful having discussions about dying and death with partners, family and friends? What tips or resources can you recommend? What do you think is the most challenging aspect of creating a detailed plan for dying?
My last home was near the most beautiful and ecologically diverse cemetery, my favorite place to walk.
I wish people talked about death more. Not talking about it and pretending it's not going to happen only makes life harder for the people you love and leave behind. It's selfish for aging people not to talk about death and make a plan instead of leaving a mess for younger family members to clean up. Good on you for talking about it and encouraging others to talk about it.
Thank you, Sue, for writing about an important topic. I put my papers in order last year, but want to give executors specific information they need about bills and such that will need attention, passwords, etc and where to find them. I love life, but don’t want to extend one that is not full and vibrant.