My Grandma Connie passed away on Tuesday, September 9th. She had been ill with congestive heart failure for some time and was experiencing a significant decline in recent months. Growing ever weaker, she sustained a serious fall in August that left everyone worried. I encouraged my father to discuss important issues with my grandmother and his siblings; things like advance directives, a Do Not Resuscitate (DNR) order, and starting hospice care. I knew that she would qualify for hospice for her heart disease. I also knew she would qualify for hospice under Decline in Health Status, which is essentially a significant decline in her functional status with corresponding weight loss.
Every time I brought up these issues, I felt like the Bad News Bear. Everyone wanted to stay optimistic and my talk of end-of-life wishes was too much for them. The term hospice to them meant imminent death. It's so easy for me to explain the hospice myths to others and to discuss the importance of planning ahead with non-family members. Discussing them with family seemed only to make them defensive. Throughout her hospitalization and rehab, I was hoping that I would find an ally in her physician, rehabilitation nurse, or home health nurse. None of them stepped up and suggested hospice care.
Grandma continued to make small improvements in the rehab center. She was looking forward to going home, even telling my uncle in her no-nonsense kind of way she was known for, "Get me the hell out of here!". She was told, however that she wasn't strong enough to go home yet. Deflated, she tried to prove her independence by going to the restroom herself, without help. She fell again and fractured her pelvis. Watching her suffer in agonizing pain, my aunt requested hospice services knowing that hospice specialized in expert pain control. My grandmothers doctor declined hospice stating that the rehabilitation home could manage her pain sufficiently. They were able to get the pain reasonably under control but Grandma Connie died just days later, in the rehab facility.
I feel guilty. I think most people feel some level of guilt after losing a loved one. I feel guilty that I didn't write her or call her more often, that I didn't send her more pictures of my family, that I didn't go to the family reunion and the Preston, ID rodeo in July. I also feel tremendously guilty that I, a certified hospice and palliative care nurse, couldn't get my Grandma Connie the expert care and compassion that hospice could have provided and that I couldn't get my father and his siblings the support and care that hospice could have provided them.
I'm passionate about competent and compassionate end-of-life care. It's the reason I do what I do. I put a call out there to all health care professionals, patients, and loved ones to advocate for hospice services. If only a medical professional (one who was not related to the family) would have encouraged hospice care, Grandma Connie could have had a more comfortable and peaceful death in her own home. Her family would have had the support they needed as well.
So, Grandma Connie, I'm sorry I couldn't help you this time, but I'll continue to do what I do to help other families. I love you.