As an End of Life Doula, I’ve had the privilege of supporting patients and families at the end of life. I’ve witnessed good deaths where the patient finds peace, surrounded by immediate family members giving and receiving unconditional love. On the flip side, there are experiences filled with loneliness, pain, and poor care inadequately supported by families steeped in their own fear, chaos, and confusion. The difference between these two scenarios is enormous, and, more importantly, it’s entirely avoidable if it is an expected death. This realization has driven me to dedicate the last two decades of my life to increasing the quality of life at the end of life.
It would be immensely gratifying if, in fact, patients and families entered the later stages of life with some awareness of death literacy and had completed necessary advance care planning. However, the truth is that the majority do not. A few of us are out there, banging the drum, but what’s the point if no one is listening? Frankly, it’s exhausting, especially when you know that death does not need to be feared. In fact, death can be a profoundly sacred moment in life that we all will inevitably face. It can be beautiful.
I’ve been teaching death literacy to groups and individuals, believing it to be a great solution. The idea was to get those Advance Care Plans in place and help educate everyone on what to expect from diagnosis to aftercare. After all, seven out of ten of us will die from a chronic progressive illness, so it seemed like an obvious solution for improving the quality of life at the end of life. I’ve been shouting from the rooftops, but not so fast.
The reality is that death, dying, and death literacy are not hot topics until a pressing, undeniable reality puts it squarely in our faces. When faced with a life-threatening terminal condition, it’s often too late to plan. “Quality of life at the end of life” becomes a maddeningly clichéd slogan.
In this blog, titled “Living Better Longer,” I’m shifting my focus even further upstream to relatively healthy older adults who have the time and the motivation to avoid poor health and improve their later years. This blog is about healthspan versus lifespan, quality versus quantity, and I am one of those people.
Many of you have heard me speak about my parents and the beautiful end-of-life (EOL) scenario they had, thanks to early hospice care and powerful advocacy, with me as their Medical Power of Attorney. Like most individuals at the EOL, they had “co-morbidities,” which means they had other health conditions on top of the chronic disease that eventually took their lives.
Did my father, who passed away from metastatic prostate cancer, have the potential to live longer if he hadn’t had COPD (Chronic Obstructive Pulmonary Disease) and recurrent bouts of pneumonia? Could he have been more comfortable? And what about his pre-diabetes? Did my mother’s high blood pressure, combined with a sedentary lifestyle, contribute to her Alzheimer’s diagnosis? While they received the best care available at the time, medical advances since 2010 make me wonder what options might be available to them today that would have extended their lives.
Over the years, I’ve seen many terminally ill patients who, like my parents, had multiple health issues alongside their primary diagnosis. The combination of these conditions makes the dying process more challenging and difficult due to their co-morbidities.
At Dying Your Way (DYW), our sole focus has been on improving EOL outcomes, but we recognize that the challenges faced by the terminally ill often stem from various treatable and sometimes reversible conditions, if addressed early on. It’s time to shift our focus further upstream and reverse engineer the process of dying.
Last year, many of you joined the ten-bag challenge to declutter our lives, making things easier for our loved ones and creating a safe environment for aging in place. This year, I have a new challenge for you.