How do people talk about hospice care?
As a human-centered design company that has decided to focus on improving end-of-life care, we've been exploring how people cope with death, dying and grief. This is the first in a series exploring how people talk about these issues via social media.
- The hospice movement which started in the UK, has been growing in the United States for several decades. Hospice care has been shown to provide better care at a lower cost, yet people have a wide variety of impressions about what it is. Through our design work, we created a game to help individuals and families talk about their end of life issues called My Gift of Grace. One of the questions in our game asks, "What three words do you think of when you hear the word 'hospice?" To start to understand how people might answer this question, we started to gather the social media tweets and posts below. Though some of the stories are uplifting, for many people, the word hospice itself causes fear, anxiety, and apprehension.
- In many cases, the word hospice is first brought up as a loved one is moving to hospice care. Research shows that the health of many people actually improves in hospice care, but the word "hospice" is used in this context as a way to announce the impending death of their loved one.
- Many people share feelings of unfairness, the suddenness of this transition, and the difficulty of grappling with this stage.
- Then comes the experience of visiting someone in hospice, which can sometimes confirm one's fears, and may involve other surprising emotions.
- and later...