"Hospice is called when there’s no more hope.”
I hear this almost every day from patients and families to whom I have been referred. For all the things people assume are sad about hospice, this is one of the saddest statements. No hope? Hope is what hospice is all about, Charlie Brown! The trick is discovering the gems for which we can still hope and finding value in them.
Before I continue with this story, I have to give some due credit. The story I am about to tell here is my own but the structure in which I’ve learned to tell it came from a brilliant book, “The Four Stages of Hope: Using the Power of Hope to Cope with Terminal Illness.” It is written by Cathleen Fanslow. If you are reading this because you or your loved one is dealing with a terminal diagnosis, I highly encourage you to check it out. Not the lightest of reading, but critical information about using the power of hope.
For me, reading the book was a breakthrough. First, Cathleen articulates the stages of hope in such understandable fashion, for professionals and lay people alike. Second, a brilliant woman with whom I had the privilege to work, Diane Sparks, created a CEU presentation around this book. It was always such a pleasure to present and received such fantastic feedback because professionals’ eyes were opened to the concept of hope within end of life care.
Cathleen’s stages of hope make sense to listeners for the following reason. We’ve all had Elizabeth Kubler-Ross’s stages of grief drilled into our heads: Denial. Anger. Bargaining. Depression. Acceptance. I don’t even have to look them up because I know them so well.
The stages of grief make sense to all of us because grief is a universal emotion. Anderson Cooper, CNN reporter, after the loss of his father at an early age and his brother from suicide, has written that grief is something to which people from all over the world can relate. Everyone has loss and everyone grieves. It is indiscriminate.
My respectful response to Mr. Cooper is that the same can be said for hope. Universally, people hope for more, hope for different, hope for better or hope for nothing to ever change. Princes and paupers alike understand grief and understand hope.
Kubler- Ross’s stages of grief help us most in the following way: they influence the way in which we community with the bereaved. If someone you love, who you know is grieving, is angry – you accept it. Different is your interaction with someone who is just plain angry. We forgive the bereaved and accommodate appropriately. In like fashion, we should do so for the hopeful.
According to Cathleen Fanslow, the four stages of hope are: hope for a cure, hope for treatment, hope for prolongation of life and hope for a peaceful death.
Let me introduce you to Lillian. Kevin and I were married in September 2000 and instantly desperate to have a dog. One Saturday in January, we saw an ad for golden retriever pups in Newnan. We went. We fell in love. All the pups captured our hearts but one in particular made sure she had our attention. We chose “Snowy” and would rename her Lillian. Getting into the car, “Snowy’s” breeder, before putting her in my lap, said, “There’s more love in your arms than you can ever give back.” He said a mouthful there.
Lillian was the quintessential Golden Retriever – loving, good-tempered, family devoted, food obsessed. To know Lily was to love Lily and she was at her best at any gathering of children. Lillian was there as I brought both of my sons home from the hospital as babies and sat at my feet for every single midnight feeding. Lily came to the beach with us, slept in the bed with us and was the definition of unconditional love.
For all of these reasons, you can imagine our heartbreak as we learned of her terminal illness in the early summer 2013. As a hospice nurse, I was aware that Lily was aging and navigating relatively severe arthritis. She became noticeably ill in June and was hospitalized for pancreatitis. Lily was released three days later, but didn’t return to her “baseline”. When I brought her back to the vet, we learned she had a large tumor on her spleen. At age 12, with arthritis, multiple lipomas, and other respiratory issues, she was most certainly not a surgical candidate. So we brought her home to love her as best as we could. Which we did successfully, for several weeks. Through love and steroids, we were even able to get Lillian to the beach for a family vacation at the end of July one last time. But just like I see with so many of my patients in hospice, that was all she had left in her. Every night after we returned she panted all night long and in the middle of the sixth night as I woke to check on her, she gave me the look that told me she had given all she could give. So two days later, our loving vet came to our home, and with Lily’s head in my lap and peanut butter in her mouth, our sweet Lil went to heaven.
Just as she did so many times in her life, Lillian was teaching me as she died. Lillian walked me through the four stages of hope in text book fashion. When Lillian was diagnosed with the pancreatitis, I hoped for a flat out cure. When it appeared she was unable to return to her baseline and other issues became evident, we prayed for treatment. As the summer wore on, our family’s greatest hope was to bring Lillian back to the beach one last time to catch a Frisbee in the ocean. And finally, when Lillian’s suffering was pronounced and with dignity she speechlessly let me know that she was tired, I hoped for a peaceful death. I got down on my knees and begged for it. I never EVER thought I could let this vessel of unconditional love go across that rainbow bridge, but without words, I understood from her that she deserved to be freed. Undoubtedly, I could have upped the steroids, increased the pain meds and maybe had a few more weeks or months. But I was forced to face the alternatives. Did I want to come home and find her dead, alone? Did I want Ryan and Sean to watch her fall down the stairs and become incontinent? There was a possibility her spleen could hemorrhage. The choice was clear and the HOPE was consoling.
People, for the most part, don’t get to be euthanized with peanut butter in their mouth. They deserve however to be asked, even in what may seem to be their darkest hour, for what are they hoping? People are always hoping.
Hospice is filled with hope. As professionals and caregivers alike, we just have to explore where we can best find it. But it’s there. I promise.