talking about death.

1 Feb

Death: We All Do It
A sermon by the Rev. Dawn Cooley
Delivered at First Unitarian Church on February 1, 2015

Moment for All Ages

“The Dead Bird”, by Margaret Wise Brown, illustrated by Remy Charlip

Sermon

Listen Here:

Isn’t it beautiful how the children took the dead bird into the woods so that they could bury it, have a funeral, sing to it and decorate and visit its grave? They cared for it so gently, so lovingly. I suspect most of us would appreciate that type of loving care when it comes our time to die. And yet, so many of us don’t talk to our friends and family about what that type of loving care might actually look like. Surveys indicate that while 60% of people say that making sure their family is not burdened by tough decisions is “extremely important” to them, a full 56% of us have not communicated our end-of-life wishes to those friends and family whom we don’t want to overburden.

And yet, we know we’re going to die. Each and every one of us. Sooner, or later. Caitlin Doughty, author of Smoke Gets In Your Eyes & Other Lessons from the Crematory, writes “The great triumph (or horrible tragedy, depending on how you look at it) of being human is that our brains have evolved over hundreds of thousands of years to understand our mortality. We are, sadly, self-aware creatures. Even if we move through the day finding creative ways to deny our mortality, no matter how powerful, loved, or special we may feel, we know we are ultimately doomed to both death and decay. This is a mental burden shared by precious few other species on Earth.”

Death. It happens to all of us.

Oh, but we’re in such denial about it! And this culture of “death denial” takes many forms. We get uncomfortable talking about our values and wishes for our death around our loved ones. I would bet that a number of you are squirming in your seats even now. Some of us superstitiously feel like talking about might make it happen sooner. We obsess about youth and looking youthful – as if young looking people are immune to death, though we know they are not. We use so many euphemisms to talk about death: we say that someone has passed, crossed over, departed, bought the farm, gone belly up, followed the light, is no longer with us. We embalm and make up the bodies of our loved ones who have died, hoping to make them look more alive, to keep us ever further away from death.

It was not always this way. The 1930’s saw a medicalization of death. Prior to this time, most people died at home. Even today, 70% of people say they would prefer to die at home, but that same percentage, 70% actually die in a hospital, nursing home, or long-term care facility.

Prior to this era of medicalization, Doughty writes, “dying in a hospital was reserved for indigents, the people who had nothing and no one. Given the choice, a person wanted to die at home in their bed, surrounded by friends and family. As late as the beginning of the twentieth century, more than 85% of Americans still died at home.” She says “Whereas before a religious leader might preside over a dying person and guide the family in grief, now it was doctors who attended to a patient’s final moments…Medical professionals deemed unfit for public consumption what death historian Phillipe Aries called the ‘nauseating spectacle’ of mortality…The hospital was a place where the dying could undergo the indignities of death without offending the sensibilities of the living.”

Now, in order to not offend our own or our loved ones sensibilities, we don’t talk about our own death, though we sometimes seem obsessed with the deaths of others. Only 7% of people report having had an end-of-life conversation with their doctor. But what is so baffling is that we want to have these types of conversations. Maybe only 7% have actually had them, but 80% of people say that if they were seriously ill, they would want to talk to their doctor about end-of-life care.

So we want to have these conversations, with our doctors, with our families, with our friends. But we don’t. We don’t because, well, because they are difficult conversations to have! We’ve spent most of our lives pretending as though we would never die, so to have a conversation means that we have to acknowledge this reality, if only for a moment. And that can be scary.

What I want you to take away from today, however, is that as scary as having these conversations may be to some of you, they are often very reassuring. They put your mind, and your loved one’s minds, at ease. Listen to some of these testimonials:

I had many end of life conversations with my mother and they made me feel like her passing and death was complete. Nothing was left unsaid.

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I grew up with the blessing of living near all four of my grandparents. As they grew aged, they moved in with our family…[On my grandfather’s last day of life, he] had spent hours outside planting a fig tree seedling with two of his grandsons. He enjoyed his dinner and went to bed. In the middle of the night, I heard him call out from his room next to mine. I went to him and turned on a lamp. “What is it, Grandpa?” “I’m cold,” he said, with a far away look in his eyes. I roused my mother…As we spread out a blanket to warm him, our eyes met with a knowing look. I woke my father, his son, and told him to go to Grandpa, that I thought he might be dying. Startled and afraid, my father said, “Call 9-1-1!” But I sat still on the edge of the bed and thought of my grandfather’s clear message over the years. “Dad, Grandpa is 94. He has had a good, long life. He told me he is not afraid to die…This is a good way to die. At home, with all of us around him.” We called Grandpa’s other two sons and the three men circled their father’s bed as he took his final breaths. My paternal grandfather died the way so many Americans say they wish to die: at home, peacefully, with loved ones surrounding them.

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When my husband’s step-mother was diagnosed with brain cancer last February, we were all in crisis mode. She was confused and disoriented, and experiencing a lot of pain. Thankfully, we had engaged in conversations about end of life prior to this and my father in law felt as though he knew what her wishes were in a general sense. As steroids and chemotherapy shrunk the tumors, my mother in law regained her capacity to engage in meaningful conversation. We had many. We talked about treatment options and the potential outcomes of those treatments. We talked about what was important to her in terms of the goals she would hope to achieve in her life, and what her hopes were for her healthcare. Some days we talked about the coming months. Some days we talked about what the final days would look like. Many of these conversations were just between her and I, in quiet moments while chemotherapy drugs were dripping into her veins. Many others included her children and her husband. A few included her health care team – she was abundantly clear about certain aspects of her care and had specific wishes around intervention she would and would not be accepting of.

We revisited these specific wishes with each change in her health circumstances. And when her goals for her care changed, we were sure to communicate those goals to her health care team. Now, 11 months after diagnosis, we are near those final days. She is more confused now and it’s hard to know for sure what she does and does not understand. Yet, we continue to talk. This journey has been a difficult one. There is nothing easy about watching someone you love experience pain and distress. But the conversations we have had, and the confidence that we, as a family, feel in knowing her wishes for her final days, are a gift. A gift that she gave to us by being so open and courageous in speaking about her life and her death with us. We are sad. But we are not in distress. We are facing these days with her, advocating for her, and supporting her health care team in honoring her wishes.

What a gift it can be, to you and to your loved ones, to have these conversations, as uncomfortable as it may seem in the beginning. And, lest you younger folks be tuning out, these are not just conversations to have with older people, as these next stories demonstrate.

August 13, 1992 was the day of all heart break for myself and husband, well the whole family, really. Our 25 year old son was injured in an accident and lived on total life support for three and a half weeks. Then the decision was made to turn it off and just wait while he died. Oh there is much of this story I could tell you, but what I want to share is that now, all these years later, I realize …I had a responsibility. It should have been that even the younger family members were included in a conversation about the “what if’s” and what would you want done. Those decisions were upon our shoulders after our child was injured. It would have made a difference if only there had been some prior input. Don’t forget the younger ones.

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My 28th birthday is coming up. As I inch closer to 30, my friends like to joke around that I’d better get ready to settle down. “When are you getting married? When will you buy a house? Isn’t it time for you to have children? It’s time to become an adult!” They’re kidding of course– none of those things are in the cards for me just yet.

While I may not be pregnant or in escrow yet, or even close, I can relax knowing that I’ve already made some very good adult decisions. At the age of 21, I made the decision to prepare an Advanced Directive to explain my wishes in the event of a catastrophic medical event. It was an odd move for someone my age, but my friends and family weren’t terribly surprised at my unconventional decision. I became interested in the study of death and dying while getting my Sociology degree in college. During college, I took a job on the Oncology floor of a hospital. During my time there, I experienced my first patient death, and many more after that. While we could anticipate the coming death of many patients, some patients declined suddenly, leaving the patient and family unprepared when the moment arrived. As I witnessed my first “hallway conversation” with the stunned family outside of the hospital room where their loved one was being resuscitated by the Code Blue team, I saw the decisions they had to make. Reflecting later, I wondered what I would do in their shoes…I knew I never wanted my parents or boyfriend to stand in the hallway and make that choice. It wasn’t easy, but I wrote out my wishes and sent a copy to my parents and my physician. It was hard for them to see, but I know they respected my decision…My generation has questions, but it’s hard to think about your own mortality in your twenties and thirties. In this transitional stage of life where we’re busy planning the rest of our lives, I believe this is an incredibly important conversation to have.

These stories, and there are many more as well, come from The Conversation Project – an organization dedicated to helping these end of life conversations to take place. “Too many people” they say, “are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain.” Their goal is to transform our culture so that we are able to have more open conversations about the kind of care we do and do not want for ourselves in our last days – not waiting to have them in the intensive care unit when it may be too late, but around the kitchen table while not under duress. The Conversation Project reminds us that having a conversation with friends or family about our values around our death isn’t really about dying, but about figuring out “how [we] want to live, till the very end.”

They have a “Starter Kit” for helping make progress in having these conversations. I will have copies of them available up here on the stage after the service, or you can go online and look at them – their website is theconversationproject.org. They recommend that the place to start is by yourself, thinking about the things that are most important to you. What do you value most? What can you not imagine living without? Then finish this sentence: “What matters to me at the end of my life is _____.”

When you’re ready to have the conversation, first consider the basics. Who do you want to talk to? Who do you trust to speak for you? When would be a good time to talk? Where would you feel comfortable talking? What do you want to be sure to say?

The Conversation Project even gives some suggested ways that you might begin the conversation, because those first words are often the most difficult.

If starting with friends and loved ones feels too overwhelming, it might be easier to start with strangers. The Eiderdown restaurant in Germantown was recently the location of a “Let’s Have Dinner and Talk About Death” event where people had dinner and, well, talked about death. One attendee shared that “it was reassuring to share a meal with others who care about the subject.”

Or you might want to go to a Death Cafe. Over coffee or tea and some light munchies, people talk about death – what it means to them, how they want it to go, what their experiences of it are, and so much more. You can find out when they are happening locally on their website: deathcafe.com.

And of course, as your minister, I am available to preside over the dying, guide a family in grief, and help you process your thoughts and wishes. We can talk alone, or with your friends or family, in whatever capacity works for you. If it is as the Rev. Forrest Church said, that “religion is our human response to the dual reality of being alive and having to die,” then it makes sense to talk to a religious professional about your thoughts, hopes, fears and beliefs about death and dying.

Every one of us will die, whether we are ready or not. It relieves a burden on our minds and hearts, and in the minds and hearts of our friends and family, when we can share our values around death and dying with them – when they know that they can honor our values in our last moments. Let us not participate in this culture of denial. There is a time to be born, and a time to die – and a time to talk about the death that we want for ourselves and our loved ones. May it be so. Blessed Be.

2 Responses to “talking about death.”

  1. Judy Welles February 9, 2015 at 9:09 pm #

    Dawn, I’m curious to know what kind of response you got to this very good sermon. It’s a topic I have a lot of ideas about, and some resources to offer (in addition to the ones you mentioned below) if you’re interested. Judy

    • Rev. Dawn February 14, 2015 at 2:28 pm #

      I didn’t get very many responses at all, actually. A few of the standard “Thanks, good message” type replies but not much otherwise. And only a small handful of folks took the printouts offered, so it doesn’t look like people were very interested in the topic. I wish more were, as I think this is one of those topics on which UUs have a lot to contribute.

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