By Bob Warren; Chief Development Officer, Family Hospice
Once upon a time, John and Nancy were living the good life. As a retired couple, they’d achieved their life-long dream of living in a comfortable home in a quiet suburban neighborhood, their three adult children and six grandchildren not far away.
Then one day, their idyllic life hit a roadblock. John was diagnosed with a life limiting illness. Near-endless doctor’s appointments, tests, and medical procedures followed the shocking report. John and Nancy did everything they could to fix the problem.
Unfortunately, as John and Nancy soon discovered, you can’t “fix” a life limiting illness. No medicine or surgery could reverse John’s diagnosis. But all the appointments, tests, and visits to the hospital did accomplish one thing: completely sabotaging John and Nancy’s once beloved life.
Soon, 911 calls and emergency room visits replaced doctor’s appointments. Nancy was determined and willing to help her husband, but she became overwhelmed by 24/7 caregiving. Now it wasn’t just John in poor health. Nancy was emotionally, mentally, and physically exhausted.
As John continued to decline, his needs grew beyond Nancy’s capabilities. Their adult children took turns staying in the home to help with caregiving. Each passing day brought new challenges for Nancy and her children as they continually sought solutions for John. Their hopes of returning to the beautiful life they once enjoyed faded a little more every day.
Then something happened that changed everything. A healthcare worker introduced John’s family to a completely different type of care plan. Ironically, this plan was not about “fixing” John. Instead, it had a singular purpose: helping John live his best life.
No more appointments, tests, or procedures. No more ambulance rides or spending hours in the ER waiting room. Best of all, the new care plan met John’s needs right where he wanted to be most: at home.
Nurses regularly visited John and Nancy’s home to manage John’s symptoms and offer caretaking education for Nancy and the children. The family had around-the-clock, on-call support, eliminating stressful 911 calls. There was even a certified nurse assistant (CNA) to help with John’s personal needs and optimize his quality of life, along with a social worker and a chaplain. Not only did this new care plan give John the medical help he needed, but it also gave Nancy a much-needed break and helped the whole family navigate the realities of John’s diagnosis.
While John was still battling an end stage disease, he now had a dedicated team of healthcare professionals, all committed to one thing: helping John live his best life, in the comfort of his own home and surrounded by his loved ones.
What John and his family were now enjoying was the often-misunderstood hospice benefit. John and Nancy were now experiencing what so many other families have discovered: choosing hospice is not giving up. Hospice is about helping patients live their best life.
I share this family fable because it reflects what I have personally witnessed over the years as I have helped families navigate a terminal illness. All of us must come to grips with our mortality. While this can be emotionally and mentally unsettling, it also gives us a valuable perspective. When we recognize our mortality as part of our journey, it informs us how to live. We move from a mindset of fighting the inevitable – death, to simply living our best life.
Dr. Atul Gawande in his best-selling book, Being Mortal: Medicine and What Matters Most in the End, states,
“Medical professionals concentrate on repair of health, not sustenance of the soul. Yet – and this is the painful paradox – we have decided that they should be the ones who largely define how we live in our waning days.”
My intention in sharing Dr Gawande’s words is not to bring an indictment on the dedicated healthcare professionals who work courageously every day to mitigate the onslaught of comorbidities that plague so many at the end of life. Rather, this is a reminder that we get to choose our end-of-life care plan. In doing so, we are not choosing how to die but how to live when life matters most.
