How does a hospice patient maintain Hope (an essential element) and LIVE while their physical body is dying? Dictionary.com defines hope as: “the feeling that what is wanted can be had or that events will turn out for the best.” Avoiding death and keeping the physical body alive is not to “be had” for a dying patient. Death comes and is inevitable. Thankfully, humans are more than physical beings with organ systems. We are spiritual, social and emotional beings as well. The author C.S. Lewis once said, “You don’t have a soul. You are a soul. You have a body.” I like that quote.
The word oxygen isn’t an elusive word like hope. Science textbooks teach that oxygen is a gas essential for all living things. It is an element (#8) on the periodic table. These are scientific facts. Yet, there is a level of mystery to oxygen. I cannot see this gas that I breathe into my lungs every 3 to 4 seconds. (Most of the time, I don’t even think about breathing.) I breathe in… I breathe out. Breathe in… breathe out. Though I can’t see oxygen, I’m undeniably aware of when I lose it and can’t breathe.
Hope, like oxygen, is essential for life, but you will not find it on a scientific chart like the periodic table. Hope is one of those esoteric words like love and faith. Though it’s hard for me to define Hope, I know what it feels like to have it. I also know what it feels like to lose it.
Perhaps the answer to the above question, “How does a hospice patient maintain hope and live … while /dying?” lies in “reframing” HOPE and focusing on the spiritual, social and emotional parts of our selves. Perhaps the hospice team can best help their patients maintain Hope by helping them conceive new “wants” that can be had.
My patient Elsie showed me how to reframe HOPE while dying in hospice care. Elsie was the matriarch of a large Catholic family. Family and God were central in her life. Unfortunately, Elsie was dying from adrenal cell cancer and ESRF (end-stage renal failure) and was no longer able to consistently make three trips/week to the dialysis center. Thanksgiving was coming and Elsie and her husband were talking about the upcoming family get together at one of her sons’ homes. All of the children, in-laws and grandchildren would be there. A few days before Thanksgiving Elsie announced to me that she had decided not to attend the family holiday dinner. Instead, she planned to spend the morning of Thanksgiving Day with her granddaughters who would all be home from various colleges. Elsie decided that she would spend Thanksgiving morning sharing her holiday recipes with her granddaughters and supervising the cooking in her kitchen. She realized that her energy was limited. She could either share family traditions with the next generation OR she could attend the dinner later that evening.
Elsie “reframed” her HOPE that Thanksgiving. She made memories with her grandchildren and passed on a bit of her legacy. Elsie found oxygen for her soul that Thanksgiving morning in her kitchen. She breathed in HOPE deeply.
HOPE is OXYGEN.
Oxygen for one’s own soul.
Breathe in deep fresh HOPE.
By-Marsha Farrell RN
(written for Haiku Exhibition at Hospice UK Conference 10/20/2016)