As a hospice volunteer, past employee and experienced family member, I'm often asked by friends and relations to explain what, exactly, hospice is and isn't. A previous post by Janice answers some of the common myths of hospice, but one question begs to be answered - does your loved one qualify? There is no better means to discuss such a sensitive matter than through stories, which I love to share.
My husband's grandmother was at the end of her life. At 96 years old, she suddenly began a rapid decline in physical strength, appetite, and cognition. Nana was adamant that she wanted to stay in her home - the home her husband had built with his own hands.
Knowing that I had worked for hospice for years, my in laws came to me for advice. How could Nana get involved in hospice care? She didn't have a disease. She was simply dying. How could they carry out her directives, giving her final dignity of choosing where she left this world, and how her final days were spent?
I launched into the family discussion I'd led so many times with others, about what hospice is, and what it isn't. I explained that a cross-disciplinary team consisting of social workers, elder health care nurses, and spiritual care providers cares for the entirety of the patient - mind, body and soul. I told them that this holistic approach was about choices. It's not about giving up hope. Every day brings new hope for strengthened relationships, even as we begin to let go. And every day is focused on palliative (comfort-based) care, allowing the patient to live as fully as he or she can, in as little pain as possible.
The Right Diagnosis
Hospice care is suggested when a patient has six months or less of expected life span. In the US, a doctor may not refer a patient to hospice without this directive. Since Nana's doctor had not recommended hospice, I suggested contacting him to obtain a directive. The doctor, who did not specialize in elder health care, did not realize that hospice was for more than cancer, AIDS or COPD. Hospice is often prescribed for Alzheimer's disease, dementia and "failure to thrive" - the diagnosis we requested for Nana.
Hospice was an easy decision for our family, because we knew no cure was available to be sought. Nana's body was failing from age, and a life well-lived. Instead of wasting our final days together focusing on treatments to prolong her life, we focused on making her comfortable, sharing memories and saying goodbye. We spent almost six months in the program, and the family became closer than ever, brought together by an incredible woman who, even on her death bed, as she lost cognition, passed on the incredible gifts of love, hope, dignity and strength.
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