Leading up to my husband’s death, I became very interested in the benefits that out-patient palliative care provided along a disease trajectory. After he died I immersed myself in grassroots’ efforts to raise awareness about palliative care, advance care planning and advance directives.
One thing I truly believe is that, if patients and their family members “share the responsibility” with their medical providers to initiate “the conversation” we’d be further along in normalizing discussions that we’re all going to die…so let’s talk about it early!
As the “second set of ears” for years at my husband’s cardiology appointments, I was witness to the value of this shared responsibility approach to ensure a high quality patient-physician relationship.
Bill had his first heart surgery when he was 16-years old, for a congenital coarctation of the aorta. The surgeon told Bill, “If we don’t do this, you may not see your 17th birthday.” A consequence of that statement was that Bill accepted his mortality at a much younger age than most of us do. He lived a long, good life because of his early acceptance of being mortal.
Decades after his first heart surgery, he had two additional heart surgeries — only three weeks apart — losing executive function and experiencing other cognitive challenges. Bill was adamant: no more advanced medical interventions. He valued his mind more than longevity beyond usefulness.
Bill “shared the responsibility” with his cardiologist, engaging in conversations regarding his healthcare options and choices. Bill believed he lived longer, and better, because of his candid talks with his doctor, which led to care that aligned with Bill’s personal goals and definition of quality of life. The “ritual” of these conversations were transformative, transcendent and patient-centric.
We give the gift of love, not only to ourselves but to our family, friends, community…and medical professionals when we share the responsibility to make our wishes known before a crisis occurs.
Here is a 7-minute video, from three perspectives on the importance to “have the conversation” before it’s too late.