What is hospice? Where did it come from? What is its history?
The concept of specialized care for the dying originated in England around the 1960’s. Dame Cicely Saunders — an important and influential physician, nurse, social worker, and writer in end of life care — established a specific facility to care for those people that were approaching death. In this specific building, care was different. There was wine. Pets were allowed. You could bring your own furniture. There was socialization. There was dignity; patients weren’t left at the end of the hall all alone as was the situation in general hospitals. The hospice movement made it okay to say, “We’ve done all we can now let’s die gracefully.”
The concept reached America but didn’t fit into our medical model. England operated under socialized medicine so payment wasn’t an issue there. Here, there was no reimbursement for a special place to die, so hospice care was provided in an individual’s home.
Hospice in the US began as a volunteer movement because as I said, there were no sources for reimbursement. The idea was to give support to people who had a life-threatening illness. This care was for people who were months from death. Interacting with family members was part of the care. The support given was found in the presence of the volunteer. Their availability was their greatest asset.
As hospices began to organize in the United States they usually had a board of directors, a paid director and a volunteer staff. Staff consisted of a RN, social worker, chaplain and a volunteer coordinator. People were recruited from the community to volunteer to assist the program in providing care — time, supplies, fund raising.
In the early-to-mid 80s, our government completed studies showing that hospice was cost effective in caring for people with terminal illness. The hospice Medicare benefit, as a means of reimbursing hospices, was created.
Now, most people in the US know the meaning of the word “hospice” and have access to a local hospice program. HOWEVER, I’m not sure they really understand what hospice does and when to use it. (To learn more about that, read this blog: Hospice Care is for the Patient AND the Family.)
That’s my brief history lesson on the beginning of a movement, an ideology, that changed how we approach the end of living.
Something more about… The Hospice Story: How a Small Idea Changed How We Die
If you want to better understand what to expect at the end of life and how to care for your special person, The Final Act of Living will guide you. I share what I learned at the bedside and include a section on the early days of hospice here in the US. Take a look at The Final Act of Living.
