Whole patient care starts with compassion
When the reality of life jams its paw into your body and rips out your skeleton, dragging your poor heart along with it, figuring out what to do with your resulting pile of goo is tough. After about 6 months of my pile of goo floating adrift in a sea of grief, I started to feel pulled to write our story. I say pulled, not driven because driven implies that there’s someone in charge, or at least mindful, with hands on the steering wheel. But for me, in the beginning, the feeling was coming from outside of myself, with no direction known.
Jim’s entire illness – from diagnosis to death – was only 6 short months. Losing him was a complete shock to my system. So, when I started to write about our family’s experience with cancer in the middle of Covid, I had a lot of questions to explore. First and foremost was: “What the heck?!”
From there, the questions would accordion between broad and specific. I’d move from the technical, trying to learn more about the cancer that took Jim’s life, to the relational: “Was I a good wife?” I’d explore the spiritual: “Where did Jim go?” Then shrink back to the critical, reviewing medical records to assess Jim’s care. The overarching ponderance came from the existential: “What is the meaning of life and what is my purpose?”
To cope with my loss, and grapple with these questions, I spent a lot of time alone, taking long drives and big hikes while listening to spiritual teachers like Father Greg Boyle, Thich Nhat Hanh and Ram Dass. I’d read and write and research and think and listen to the quiet.
Eventually, my pursuit of the answers to life’s unanswerable questions turned to the experiental. Again, I felt pulled. I felt pulled to work with people in hospice care. At the time, I think it seemed like insanity to many of my friends and family. But in these quiet spaces, I learned two things. 1. The greatest teachers about life are the dying. 2. I have tremendous emotional resilience and capacity to be present with the frail, the sick and the dying. In fact, it’s a space where I feel most at home.
After three years of studying the meaning of life and writing our story, I finally accepted the one simple answer that kept popping up to address my complex questions.
And that answer is: This is the human condition. We are all born. We live a life that has pain, and suffering and joy and wonder and anger and happiness and sorrow. And then, every single one of us dies. The human condition.
Fortunately, there’s a part B that makes that answer a bit more palatable. Compassion is the invisible bridge by which we connect with each other in our shared human experience. If we’re open to it, compassion is where we can find the warm, yummy richness of life.
You’ll notice earlier I said “the human condition” was the answer to most of my questions. I still have one outstanding question. It’s a question I found myself contemplating repeatedly during Jim’s illness: Why is our healthcare system running so low on compassion? Without compassion, caregivers view the patient as a checklist, scrubbing the humanity right out of a person and their family.
The compassion connection can make or break a patient experience. This invisible yet crucial element takes into account the whole patient, and informs care plans, treatment options and prescription choices. Without compassion, patients base their care decisions on partial information. It’s like asking someone to build a jigsaw puzzle with only half of the pieces. It's important to note that this breakdown in compassion is affecting providers as much as it’s affecting patients, if not more. I believe our healthcare system is experiencing a crisis of conscience.
With purpose and intention, I share an emotionally honest, deeply personal view of my relationship with Jim because I first want to connect with the reader through our shared human experience. Once I establish that relationship, I shine a black light on our care to reveal all the broken and missing bridges that cut off the compassion connection with our caregivers throughout Jim’s entire cancer battle and how it affected Jim’s diagnosis, treatment choices, his end of life, and our family.
My narrative offers a patient experience perspective often sought, but rarely heard. Through our story, I impress upon providers that patients aren’t checklists. We are people. And if we are bold enough to connect through our shared humanity, we will be able to subvert the prevailing paradigm of patient versus provider to a more collaborative model of care that prioritizes patients’ needs over profit. In speaking truth to power for my family, I give voice to the countless cancer patients and their caregivers who feel helpless in a healthcare system plagued by a dearth of compassion.
My intention with “Our Last Walk Home” is to breathe new life into the conversation about compassion and the whole patient model of care. My next order of business is to take my book on the road and start talking to folks at medical schools and nursing schools and any medical professionals who might be interested in using our story in their curriculum. So, if you know of people or groups who would be interested in our story, by all means, let me know or send them my way!