Posts from the Past - The Original Ars Moriendi Services "Good Death" Series

#Gooddeath-Part 1 by Sara Milliken

As I reflect on “The Art of Dying” or what it means to have a “Good death”, I often think back to one of my early patients in the ICU. I had come to the ICU from a background in EMS and the Emergency Room. I had seen a lot of death, but most of it was unexpected, chaotic, undignified and violent. As I transitioned to working in the Intensive Care Unit, I was exposed to a similarly undignified, and painful path to death via ventilators, central lines, “tubes everywhere,” and often ending with the violent act of CPR. However, sprinkled in to the “bad deaths” were a few that changed my perspective on death, and ultimately changed the way I approach end-of-life situations.

Rex was a man well known to my community. He was a boy-scout leader, coach, community servant, husband and father of five. Rex also had a neuro-endocrine colon cancer. He was on church prayer lists, meal trains and heavy on the hearts of many. Even while he was fighting cancer, he was educating and caring for those around him by urging people to go get their colonoscopies. In his own pain, he continued to care for the people around him and add to the legacy he was leaving.

In October 2016, about 6 months into my career as an ICU nurse, I had the distinct honor of being a very small part of Rex’s last days and experiencing one of my first “good”, sacred deaths. What made his death different from the many others? I believe that the difference was that Rex was able and willing to fight for his priorities in his end-of-life. From the outside looking in, these were the priorities that I saw in him: autonomy, dignity, companionship/family presence, comfort, and leaving a legacy.

As Rex confronted his last days of life, with the help of strong ICU medicines, he was able to be awake to maintain autonomy as he made decisions about what his next steps would be. He chose to protect his dignity by entering hospice care and forgoing the ventilator, CPR, and loss of control that would inevitably be the next step on the road of “aggressive medical treatment.” Along with hospice care comes a focus on comfort and quality of life.

“Comfort” is often equated with pain medications. While controlling pain is one of the highest priorities in comfort care, comfort can also be found through other means. Rex spent much of his last days surrounded by the people he loved the most, his wife, children and mom. Visits from important friends and coworkers sprinkled through the days and he had the opportunity to share his heart with each of them. Palliative care doctor Ira Byock says that there are 11 essential words that should be said to reduce symptoms at the end of life: “Please forgive me,” “I forgive you,” “I love you,” and “Thank you.” While I was not privy to the individual conversations had in Rex’s room, I am confident that some of these words contributed to the comfort he experienced.

As it became clear that Rex would not be going home from this hospital stay, the focus turned to supporting his priorities. One of his priorities was to have his family present with him. For last night in the hospital it was arranged to have some rooms available to fit his five kids (age 5-18), wife and mom so that they could have one last night together. That day he had spent time speaking individually to each one of his children, speaking love and truth about their lives and cementing his legacy in their hearts. Witnessing them walk in and out of his room was nothing short of heartbreaking but spoke so strongly of the man that he was and the legacy that he left.

As the medicines were turned off at the time of his own choosing and he slipped from this broken life to one eternal, he gave several gifts. He gave his family a legacy of love, service and devotion. He gave his community a legacy of dedication and advocacy. He gave me the gift of witnessing a sacred “good death” that changed the trajectory of how I speak to and care for those at the end of life.

Rex chose hospice care which provided a lovely supportive and experienced hospice nurse to help guide them through the last days, even while in the ICU. It also provided bereavement services for his wife and children for the year following his death. For the many who die suddenly or choose another path to the end of their life, these services are hard to find in the community. Beyond an end-of-life home, with the help of willing volunteers from the community, Ars Moriendi Services will provide bereavement services, education on end-of-life planning, and death doulas, so that someday every person has access to the tools they need to navigate the art of dying well.

Thank you to Rex’s wife Stephanie for believing in our vision and continuing Rex’s legacy by generously supporting Ars Moriendi Services.

Shared with permission