Amazing Grace on Agape Road

"You matter because you are you, and you matter to the end of your life. We will do all we can, not only to help you die peacefully, but to live until you die.” ~Dame Cicely Saunders

You matter because you are you, and you matter to the end of your life. We will do all we can, not only to help you die peacefully, but to live until you die.” ~Dame Cicely Saunders

I first learned of Dame Cicely Saunders when I became involved with hospice almost 25 years ago. She is regarded as the founder of the modern hospice movement. In 1967, she established St. Christopher’s Hospice in London, essentially a home within a hospital.

It would be the first time someone combined expert pain and symptom control, compassionate care, teaching and clinical research to aid the dying. This was the culmination of over two decades of her work, resulting in palliative care techniques that changed medicine.

As I learned about hospice, what fascinated me so much about her work was the notion of an inpatient hospice facility. This resonated with me because it seemed that this would quite naturally be a standard of care, but Oklahoma had no such facility.

Why?

Because we were forbidden by law to have one. Such a thing would require new legislation. That fact alone would be worthy of an article but that’s a story for another time.

Amazing Grace on Agape Road

By John Spivey

Hospice Care as a service has evolved over the last 25 years, mostly for the better. Until recently, Oklahoma City had only two inpatient hospice houses (with a few more “hospice options” scattered about the state, including The Journey Home in Bartlesville). But now, OKC is blessed to have yet another alternative for those in need. It is called Agape Road.

Agape Road Social Hospice in Oklahoma City

Agape Road opened its doors on December 17 and once I was able to make my way past all of the attendees at the open house, I got a chance to meet Julie Brown, Agape’s Executive Director.

“I started working in hospice back in 1992 and I did that for 20 years,” she said.

“And then I learned about Clarehouse in Tulsa. It was the first social model hospice in the state. Kelley Scott started this 16 years ago, from an apartment no less! She mentors people here, and all over the nation. It’s her model we are following.”

I had never heard of a social model hospice.

“After meeting Kelley, I knew immediately that God was telling me that this, Julie, is what you’re going to do next. But I wasn’t sure just how I was going to do it. After much time and prayer, I looked at my portfolio and lo and behold, I had the means to begin. The two existing hospice houses in OKC are different in that they’re paid for by Medicare. We depend on the generosity of our donors. And our services are free.”

“I want to be clear, we are not a hospice. We are not a medical facility. We collaborate with hospice. The criteria for those on hospice is that they must have a place to live and a 24-hour caregiver. But there are a lot of people out there who have neither. Therefore, they either have to go to a hospital, or a nursing home, if they can afford that.”

“So hospices refer to you for housing?” I concluded.

“Yes, and our criteria is that they must already be on hospice care. We are designed for people who have no other place to go, who have no caregiver, who may be homeless. If we accept them, hospice continues to care for them. Our [residential] services are provided by paid caregivers and trained volunteers under the direction of their local hospice.”

“So is this model the future? Are we getting closer to the Dame Cicely Saunders model of care?” I asked.

“I don’t know. As long as government continues to legislate how we die, where we die and how they will pay for it, I just don’t know how we’re ever going to get away from that.”

“Take the hospice houses we have here [in OKC]. Medicare regulations have made it harder to get accepted into a hospice house like Integris. It used to be that you could just go there to die, but not anymore. You have to have a skilled need – such as IV pain meds, or a tracheotomy, etc. And most people who are dying do not have a skilled need.”

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