Hospice Misconceptions: It’s Not Just About Dying

| By Casa de la Luz

One of the misconceptions I often encounter is that hospice is only about dying. While it is the case that hospice cares for people at end of life, hospice workers want to help our patients live the time they have remaining to the fullest. I’m reminded of two patients who had the chance to experience this while receiving assistance from hospice.
The gentleman met me at the door and welcomed me into his home. On that first visit we talked about his youth on his family’s farm in the Midwest prior to World War II. He had been drafted into the army during the war, and through an assignment with the military he came out West and fell in love with the desert.
He worked as a mechanic after the war, in a town near where he had grown up. He worked and saved until he could move his family to Arizona. He always talked about how active he had been in his work. Like many of his generation, work was life, and work was dignity. Also, like many in his generation, he did not quit working when he retired, he just changed his focus. He owned an old classic car and kept it in the driveway in mint condition. Keeping the car and his home in good condition were signs of his dignity as well. After the first visit was over, he walked me to the street and retrieved his mail while saying good-bye.
When the illness that ended his life began to limit his daily activities, we were able to manage his symptoms successfully. He was so pleased that he felt well enough to cut back the trees and bushes in his yard and shine up the car a little. He told me, “I’m sick, but I never knew there were people like hospice to help me keep going.”
I knew the end was near when he could no longer meet me at the door, or walk down to the end of the driveway when our visits were over.  He knew it as well, when he asked me to pick up his mail for him.
He expressed fears that he would have to leave his home. In the end, he moved into the veterans’ hospital, but as he said, “Hospice kept me home and independent for most of my illness.”
This emphasis on living and dignity was well understood by another patient and his wife. When cancer began to limit his activities and life expectancy, they made the decision together that hospice was their best option. She called their friends to tell them that hospice was now going to help care for her husband.
She laughed when she told me how almost everyone expressed sympathy at that point because hospice was involved. She said, “I told them, don’t tell me you’re sorry, this is a good thing.” She explained that they all knew that her husband had a terminal illness prior to hospice involvement; what they did not know, was that comfort care and support provided by hospice would make his remaining time the best it could be.
At first, because his symptoms were well controlled, her husband was able to walk around his neighborhood and meet friends for lunch. His friends were then able to understand that while they were losing their friend, hospice indeed was good for him. As his illness progressed, he was confined to his home, but was still feeling well enough to receive friends and family. His wife expressed her gratitude for the quality of life he had and how they experienced quality time together up until his death.
Hospice exists to manage the pain and other symptoms that come with life-limiting illnesses. We also serve the patient’s family members with grief support and other issues that may occur at the death of a loved one. Because hospice serves at the end of life, it is easy to understand why there might be misconceptions about hospice care. Hospice serves the dying, but it is truly about helping patients live their lives with care and dignity.
By Tom Saunders, Chaplain
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