03/06/2025
I recently sat down with Jim Parker, senior editor of Hospice News and Palliative Care News, to talk about what we can do better in our society and the mainstream medical industry to ensure that patients and families have what they need to have positive end of life experiences.
Here Are The Challenges We are Facing Today…
~Over 10,000 people turn 65 every single day in America.
~According to a Hospice Gallup Poll, 90% of them say they want to be cared for at home if they become terminally ill.
~A Recent Medicare survey determined that 98% of the hands-on care for those at the end of life is done by family caregivers.
There’s just one problem…
Family caregivers usually don't know the first thing about how to provide quality end of life care.
One hundred years ago the skill of caring for the dying was handed down from generation to generation, but it is all but lost in our modern-day society and this has devastating effects for both patients and their loved ones. It’s time to bring these skills back.
One of the questions I was asked during this interview is: Why did you write the book? What was the need you were trying to fill?
Here is my answer:
I was a hospice nurse working in home hospice care, and for most people, it wasn’t going as well. People were coming on services very late, because we don’t talk about end of life. We don’t plan on it, and we’re not educating doctors on how to have these conversations. And so by the time we were receiving people in hospice, sometimes they had just days, and it’s very hard to get things in order then.
So for me, thinking as a hospice nurse, if I’m supposed to teach those loved ones how to do the care, I can’t do that with such a short amount of time. When the fear of death is in front of us, people are blocked from learning. So with my experience, I developed a Doulagivers Model of Care, which is three distinct phases that I identified, of end of life and the interventions families could use in each one of those stages.
And I went to the [hospice] CEO and I said that I have an idea for this. I think that we can train family caregivers with this complete training on how to care for their loved ones. And he said, ‘This is great, but we can’t do it because it’s not going to fit into the reimbursement model right now.’
So I just went to the library and I held a seminar, and all of a sudden people came out. The room was packed to learn about how to care for somebody at the end of life. Then I put it live online, and heard from people all over the world. The book was another way that we could get that out and hopefully reach more people again in something that touches us all in this life.”
The Good Death Book is a continuation of the mission I started many years ago with these free trainings.
Here’s what Library Journal had to say about it:
"The Good Death Book is an essential guide to every aspect of dying from hospice care to spiritual and real-world needs and can also serve as an excellent manual for readers seeking bereavement/grief support."
It’s time to start having open conversations about this guaranteed part of our human experience. It’s time to start embracing and preparing for this natural life event rather than avoiding and fearing it unnecessarily.
Because here’s the real truth… With the right kindness, education, and support - death can be the natural, sacred experience it was meant to be.
xoxoxo Suzanne
Read the full article here: https://hospicenews.com/2025/02/24/hospice-nurse-author-suzanne-obrien-on-engaging-families-earlier-at-end-of-life/
