Fear of the “H” Word…Hospice
By: Marygrace Lomboy, CRNP –
I had worked in hospice for approx 8 years and when my father was physically declining, it was extremely difficult for me to bring up the “H” word to my own family. My mother whispered it around my dad and the rest of the family. I knew it was time to get hospice involved, but there was so much fear and misconceptions around the “H” word, that it was difficult to get the entire family on board as well as my dad’s physician. When was the right time? I even doubted myself at times in suggesting it…
For most patients and families, accepting the time has come for hospice care can be extremely stressful and emotional. It is the time that the reality of the end of life may be near. When do you make that decision? Medically, the time is right when the attending physician indicates that life expectancy is six months or less and that further aggressive treatment is no longer beneficial or may cause unnecessary discomfort. Choosing hospice does not mean giving up. Many patients actually rally and feel much better after hospice services are started as pressures of aggressive therapies are no longer part of their plan of care. Families feel supported and there is a shift to a holistic approach to care, addressing spiritual, emotional, social as well as physical needs are addressed.
Hospice is most effective when involved sooner rather than later in a person’s life limiting disease. Unfortunately, I often see it used as a last minute “death bed” service. It’s too often that I hear family members saying to me “I wish we had known about hospice sooner”.
Fear is probably the biggest factor in not choosing hospice. Families are sometimes fearful that they are no longer searching for a cure for their loved one. This may cause guilt for family members and a sense of “giving up”, or worse – trying to relieve themselves of the burden of care. Sometimes there is also fear on the doctor’s part as they fear that their patients will feel abandoned if they suggest hospice.
When we finally got hospice involved with my father’s care, there was such a sense of relief for my family, and most of all, for my dad. My mother had been caring for my dad without much help and was starting to feel exhausted and overwhelmed at times. The hospice team came in and supported, educated and listened. It is what we needed as a family to come to terms of what was happening and also giving my Dad the dignity he so deserved and the comfort he was longing for.