I am a master educator with extensive experience in curriculum and workshop development. I’ve presented at international conferences on Restorative Justice, and on Teaching English as a Foreign Language. (This is an unexpected beginning to this “good death” work – I know – but stay with me.)
In 2013, I left a teaching position at Colorado State University to follow a dream. I became a credentialed Life Coach and founded Mindful Expeditions, LLC. My practice focused on dating support for individuals and relationship coaching for couples.
During that time, heart-wrenching personal loss compelled me to explore the concept of a good death. Initially, this was a pursuit fueled by grief and confusion. However, events four years later would shatter the life I knew and transform my vision and vocation: I now have a mission to share what I know about dying well with you.
In the fall of 2012, my mom died three weeks after an unanticipated surgery. My dad battled cancer from 2012 to 2016. My parents were not well-informed about end-of-life options. They were unable to imagine a good death. They couldn’t talk about what mattered to them.
Our family had never had transparent end-of-life conversations. While my parents were dying, confusion and fear amplified family pain, anger, and discord. Relationships among my parents’ survivors – their children and grandchildren – have never recovered. If my parents could do things over, I’m certain that they would do them differently.
Neither of my parents’ death experiences reflected what they valued in life. I couldn’t change what had passed, but I could influence the future. I was compelled to find a better way for myself, my husband, and our children. I needed to learn more to be able to imagine a better ending. I needed the insight of others’ experiences. I trained and began working as a hospice volunteer.
In the summer of 2016, an experience with a dying elder who did not have advance directives sent me running home to my husband, Joe, adamant that we get our directives written NOW. We were in our mid-50s and perfectly healthy, but Joe knew the suffering our family had endured from my parents’ unprepared passing. He readily agreed.
I gathered resources, notebooks and sharpened pencils. Sunday afternoon, we walked to a local brewpub near our home. We felt confident that we could complete the documents we needed in just a few hours. We were intelligent, literate people, pretty self-aware, and highly motivated. We respected each other’s opinions and decision-making skills. We could do this.
Two hours later, we changed our minds! There were questions that seemed basic enough, but our certainty in first blush answers crumbled when we questioned each other’s rationale. These choices had far-reaching consequences, so we asked, “But what if…?” again and again. We soon realized that we simply didn’t have enough information or experience to be sure about our decisions. We went home that day confused, frustrated, and happy. Confused and frustrated because we weren’t sure how to proceed, but really happy because we had time. At least we were tackling this job while we were mentally and physically healthy.
Over the next couple of weeks, Joe and I revisited the advance directives conversation twice with similar results: no progress. We soon realized that the confusion and frustration would only go away if we could come up with a better approach. We needed concrete information and a broader cross-section of real-world experiences with death and dying.
In early fall, we assembled a group of neighborhood friends – people whose thinking and values we respected – and we formed an advance directives writing group. I gathered research: articles, podcasts, TED Talks. We met regularly to share what we were learning. We talked about how to reconcile new information with our experiences of others’ deaths: our grandparents, parents, siblings, child, and friends. Collectively, we had a lot of experience with death and dying. We clarified, sharpened, and expanded our own visions of a good death through generative dialogue: “Tell me more….What if …? Why?”
By January 2017, a Larimer County Health Care District official attended our last gathering to notarize and file our documents. We were in a celebratory mood. We were confident that the documents we had created were solid representations of what each of us envisioned as a good death. In crafting these documents, we had honed our appreciation for daily living. We also deepened our understanding and affection for the members of our group and for the friends and family with whom we shared our directives. We felt accomplished and assured that we were done with this topic for at least a couple of decades.
And then, just ten months later, the sky fell. On October 17, 2017 Joe was diagnosed with an advanced and aggressive form of cancer. In our safe at home were Joe’s well-crafted documents telling us exactly how he wanted to be cared for at the end of his life. That was a small miracle because there’s no way we could have made thoughtful, informed decisions on the spot. Breathing was difficult. Rational thinking? Irretrievable. Gone. Impossible.
Joe died 10 weeks later at home with the support of hospice, cared for by his loved ones. Rather than running from appointment to appointment to confirm what was obvious, we were able to put his thoughtful, explicit directions into action. We took the time to have one more dinner at our favorite restaurant, take one more walk around Bear Lake, see one more film at our favorite theater. We privately said our good-byes to each other early – while we still had privacy – so there was time to amend them if there was anything important that we’d forgotten. Joe’s ending wasn’t perfect, but it was as good as we could make it because we’d anticipated and planned for as much as we could foresee.
Our family was able to rally around Joe, and our friends were able to rally around us. We had an internal team dedicated to supporting the person dying, and a secondary circle of support committed to helping Joe’s caregivers and survivors. Dying isn’t a singular process. One person’s death shakes the foundation of many.
Since Joe’s death, it’s become my survivor’s mission to help people plan to die well. I want people to die with dignity, in alignment with their values. I want families to survive the death of loved ones without regrets, to move forward feeling stronger and more cohesive, to be woven more firmly together because of the loss they’ve shared. My work now is to help people live well – and prepare to die well – for themselves and for those they love.