Alone in my mother’s hospital room, I was holding her hand when she took her last breath. Alarmed by the missing inhale, gently pressing my fingers to her wrist, I counted the last seven beats of her heart before her pulse stopped, too. That was September, 2012.
My dad had been diagnosed with stage four cancer just a month before my mom’s death. He spent his last three years in doctors’ offices, enduring medical tests and surgeries, and anxiously waiting for the next lab result and an updated prognosis. There was never much hope.
My parents were not well-informed about end-of-life choices. As they aged, they became so overwhelmed with fear of what they didn’t want, that they were unable to imagine a good death. Their dying time could have been less confusing, painful, and fearful – could have held more grace and joy – but they were tragically unprepared.
Our family 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 from this trauma.
If my parents could do things over, I’m certain that they would do them differently. But dying is a one shot deal. There are no do-overs.
My own grief was deep and complicated. Neither of my parents’ death experiences were reflective of their life values. They deserved better, but there was no way to fix that. I couldn’t change the past, but I could influence the future.
I was compelled to find a better way for myself, my husband, and our children. I needed to witness how other people died – to expand my options, to understand the different paths one could create with forethought. I wanted a better experience than either of my parents had had.
I also wanted to learn how healthy families and communities supported each other when a loved one was dying. I wanted to figure out how to reduce the trauma my family would suffer when I died. I applied, trained, and then began working as a hospice volunteer.
At the time, I didn’t know that my better way would soon be put to the test with yet another death in my family.
During the summer of 2016, I regularly visited a genteel woman in her 90s. Her intake chart said, “palliative care” not “hospice.” She was frail and rapidly declining, suffering from advanced cancer, cognitive decline, near blindness.
She hadn’t fully accepted the inevitability of her death. She didn’t want to talk about end-of-life details. “Hospice” scared her, so we didn’t talk about that. But as time went on, she would repeat again and again that she wanted to die quietly at home, that she knew the end was near, that she would welcome death.
Then one Friday afternoon, during our weekly tea-and-cookies happy hour, she became confused. She couldn’t find words. Her speech slurred. As she struggled to contain her panic, she turned to me for help.
I recognized the tell-tale signs of a mini stroke. She’d had several before, but never with me. I went straight to the kitchen.
The red refrigerator pocket containing her advanced directives would tell me exactly what to do. Should I call an ambulance? … send her to the ER with strangers, loud noises, bright lights, machines, and interventions that couldn’t help? Or should I simply hold her hand, comfort her, and see what would come to pass?
There were no directives on the refrigerator. Only hospice patients need to complete these.
What should I do for my dear elder friend? What would you have done?
I learned so much that afternoon.
Later that night, seeking comfort in my husband’s arms, I was adamant about one thing. We needed to write our advance directives NOW.
It’s a tremendous responsibility to advocate for the medical care of another person. It’s absolutely excruciating when that person hasn’t already made those decisions for themselves and shared their insight with you.
Without explicitly written directives, the default course of action is to save life at any cost. Even if that means prolonged suffering. Even if that means a person will live a life they would not choose and do not want.
My husband and I were in our mid-50s and perfectly healthy. But Joe knew the excruciating pain our family had endured during my parents’ unprepared passings. He readily agreed; and I was on a mission.
I had spent most of my working years as an educator and had extensive experience in curriculum and workshop development. I knew how to tackle this assignment. I gathered forms, note paper, and sharpened pencils.
Sunday afternoon, we walked to a rustic pub near our home. Why not enjoy the process? We were confident that we could complete our directives in a couple of hours, grab a burger, clink our beer steins, and head home.
I’d already taken a 90-minute workshop on advance directives a few months back. We were intelligent, literate people, pretty self-aware, and now highly motivated. We respected each other’s opinions and decision-making skills. How hard could this be?
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 literally had life and death consequences. So we asked each other, “But what if …?” again and again.
We soon realized that we simply didn’t have enough information or experience to be confident in our decisions. We went home that day confused and frustrated because we weren’t sure how to proceed. But we were also relieved because we were determined and healthy. We still had time.
On and off, over the next few weeks, Joe and I revisited the advance directives conversation with the same results: no progress. We just kept spinning our wheels. I soon realized that we needed a better approach. We needed more concrete information, and we still needed a broader, comprehensive understanding of real-world experiences of death and dying.
By early fall, I had the answer. I gathered a group of neighborhood friends – people whose thinking and values we respected – to form an advance directive writing group. I assembled research materials: books, articles, podcasts, TED Talks. I crafted questions to help us navigate challenging personal decisions.
We met regularly to talk about what we were learning and how to reconcile new information with our experiences of others’ deaths: our grandparents, parent, sibling, child, and friends. Collectively, we had a lot of experience with death and dying. But we’d never before created an environment where such vulnerable conversations were welcome. We had never dedicated focused, intentional time to share what we’d witnessed.
Together, we clarified, sharpened, and expanded our individual visions of a good death. Again, we asked, “What if …? Why? Tell me more.” We listened deeply and learned from each other.
By January 2017, our directives were completed, notarized, and filed. We had documented our wishes for end-of-life care that aligned with our vision of a life worth living. This kind of planning would mean that when our last days arrived we wouldn’t be desperately scrambling with triage, but instead – because we’d given deep consideration to this inevitable moment – we could make the best of the time we had left.
Our relief was palpable. There’s so much we can’t control about dying, but we’d done our due diligence and created a framework to guide ourselves – or our agents – with the best information available. We’d done our best to control what we could.
We felt accomplished and assured that we were done with this topic for at least a couple of decades. And then the sky fell.
In October of 2017 – just ten months after we’d signed our directives – my husband, Joe, returned home from visiting our daughter in Phoenix with shattering news: he had an advanced and aggressive form of cancer. For all of us, breathing was difficult. Rational thinking? Irretrievable. Impossible. Gone.
We had so little time. There was no way we could have made thoughtful, well informed decisions. But waiting at home in Joe’s office safe was a small miracle: his well-crafted documents telling us exactly how he wanted to be cared for, the advance directives we’d written together with our neighborhood group less than a year ago.
Joe died at home 10 weeks later in accordance with his wishes, cared for by family with the support of hospice. Rather than running from appointment to appointment to confirm what was obvious, we were able to put his thoughtful, explicit plan into place.
We had time to have one last dinner at our favorite restaurant, take one last walk around Bear Lake, see one last film at our local indie theater. At our favorite picnic spot, we said our good-byes to each other early – while we still had privacy – so we could add things tomorrow if anything important had been 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 advance planning paid dividends we’d never imagined. 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 Joe and a secondary circle of support committed to helping Joe’s caregivers and survivors. Our proactive approach to dying meant better care for Joe and better care for his family.
My mission now is to help people plan to die with dignity, to die in alignment with their values, and to live life as fully as possible until the very end. I implore you to write your advance directives well before you need them. It’s the ultimate act of self-care.
Your death will significantly impact those you love. How you die will be part of your legacy. It’s your very last story. What do you want to teach the next generation? How do you want to be remembered? Plan to help your family survive your death without regret and move forward with strength and solidarity.
Please, while you still have time, let me guide you in completing this critically important work.
Let’s get started now.