Hospice Unawareness: Spreading the Message of Hospice Care

A woman in her mid-50’s lay dying in the ICU unit of the hospital. Her family divided. A son and daughter who wanted all life-saving measures taken to maintain the life of their mother. Another daughter, the eldest, saw the signs of her mother living her last days on this earth.  The woman hadn’t been conscious for two days. She was bleeding internally and she was going through organ failure. Her liver had nearly shut down entirely. The doctors didn’t tell her, or her siblings, that their mother’s time was coming to an end.  They suggested dialysis.  The oldest requested that the nursing manager contact hospice. The ICU Nurse Manager told her, “Hospice doesn’t admit patients on Sundays.”

The daughter knew this to be untrue, but given she was in an unfamiliar city and didn’t know where to begin to call, she let it go. All around the family people talked at them. The most common question heard from the children of the woman was, “What else can we do?” No one gave them the answer they needed. No one gave them the answer they deserved. No one listened to their concerns and helped them cope with the situation they were facing. Hospice wasn’t elected in the case of this family. From the time the physician suggested dialysis, followed by the eldest requesting hospice, to the time her mother died, it was a 3-hour period.
This is one family’s story. A daughter who knew enough about end-of-life to ask for hospice, only to be denied. Their mother received palliative care but there was no one there to help her three children handle the emotional scene that was unfolding around them.

Hospice Unawareness: Approximately 42% of individuals who died in the United States in 2010 were under the care of a hospice. I believe there’s at least another 10% that would have elected hospice had they known about the option or understood what hospice had to offer.

As a community, sharing the word of hospice begins with each one of us. We own that responsibility. For me, it’s talking to anyone who will listen about how wonderful hospice can be for patients and families. Sharing that it’s not a “death sentence.”  It’s not committing to “giving up.”   It’s a way to have a quality of life experience. It’s an opportunity to maximize the time that a person has remaining.

How are you spreading the message to help end hospice unawareness?