Our Suncoast Hospice story began in 1976 when a small group of Pinellas County residents met in Clearwater and led with hearts and determination to bring compassionate care and comfort for the dying and their families. This specialized model of care is known as hospice.
The new book, A Caring Sanctuary: Suncoast Hospice Forty Years of Caring, is co-written by Mary Jean Etten, Ed.D, APRN, CMP, FT, the longest-serving volunteer and a founder of Suncoast Hospice, and Betty Oldanie, RN, BSN, MS, a former, longtime executive and a previous president and CEO of Suncoast Hospice. Both women continue to serve on our board of directors today.
The book highlights our evolution to one of the largest and most highly-esteemed nonprofit hospices in the U.S. This extraordinary mission of care for all in need is supported by our volunteers, staff and the community as part of the Empath Health network.
Read part one of our talk with co-author Dr. Mary Jean Etten:
How did the book come together?
Many years ago I got an idea that it would be important to save and document our history. I wrote a small section and got together with Kathy Roble (retired volunteer services director). She got some volunteers who spent a lot of time going through our newsletters and helped us outline categories.
I thought our 40th anniversary (2017) was an especially good time for this to happen. I thought Betty Oldanie was a perfect person for this project. We had a wonderful time doing it together. She’s a very special person. And I don’t know what we would have done without the other staff who helped us.
Why did you want to create hospice care in Pinellas County?
In those days, the care of the dying was terrible. In 1968 at grad school and St. Petersburg College teaching, I saw clinical care and people dying in hospitals. They were kept at the end of the hall after death.
I was a nun for 17 years. Our nuns had beautiful deaths. They had excellent pain and symptom control and fabulous care. They never died alone and we went to their funerals. It was very much like hospice care.
How did the founding group start?
I got a call to attend a meeting at Unitarian Universalist Church in Clearwater and I had a heck of a time finding the place. All these people came together. Bunny Flarsheim (a founder) was grieving the loss of her son and her daughter. And the others had professional or personal experiences of deaths that were negative. It was the right time in this community.
Who were your greatest influencers in the movement?
Elisabeth Kübler-Ross, M.D. (On Death and Dying author) was our biggest influencer. Kübler-Ross was an expert on death and loss and helped acquaint the community with knowledge. She came down at the request of Bunny.
Some of our early people, too. Keith Irwin was our first chairman and a wonderful man. Bunny was more of the mechanics of our organization. And some of our early founders nationally and internationally. I met Cicely Saunders (a developer of the first modern-day concept of hospice care in England) at the first national hospice conference and she spoke and was wonderful.
I think about our CEOs. Mary Labyak (late CEO) came on and was the perfect person to lead us in those beginning days. Mary was well-known and highly-respected. I think Rafael Sciullo (President and CEO of Empath Health since 2013) is excellent for this next period of time because we are well-founded now.
What was it like starting a hospice organization?
Hospice was brand new in this country. Not knowing a lot about what that work was, I think every effort was taken to learn and to do things right. Three of us went to a workshop with Hospice of Marin and New Haven Hospice (first U.S. hospice). They gave us their wisdom.
There were tremendous challenges. It was hard in the beginning because some people in health care didn’t trust us and thought, do they want to take our business? We had no money and didn’t start accepting patients in the first few years. It was hard to pay anybody. At one time our board had to make guarantee notes to help pay people a little bit. We had to do car washes.
The big thing that helped us is when HEW (U.S. Department of Health, Education and Welfare Services) offered grants for hospices to determine the benefits and economics of hospice care. Leo Gamow (head of board) and our group wrote a grant, and that really helped us take off because we were reimbursed for care.
As time went on we created materials and education about what hospice was and we did many innovative programs. So many hospices are small and just do hospice, but our hospice was so responsive to the community’s needs and that created a uniqueness about us. More people saw the effects of this really good and total medical, psychosocial and spiritual care. Love is at the center of it all. It is a very deep love for the concerns of other people. What a beautiful thing.
What does hospice care mean to you today and for the future?
It means serving people at one of the most important times in our life. From birth to death, this is one of the most important milestones. I’ve had friends who have had hospice care and lots of people that I meet and a lot of my students have had family members that have had hospice care, and they all speak very highly about it.
Nowadays it’s very distressful to see how people come to hospice at the end. I think that these become crisis situations. Hospice wasn’t founded to be a crisis situation, we were to be there over time to follow people’s needs. But even in a short time you hear from people whose families were cared for by us, and they are so appreciative. And there’s the after-care of the bereavement support.
We are such an extraordinary organization. Our grassroots founding is so spectacular. We have served so many people with needs and we have developed programs to help them. We have stayed true to our mission, and that’s important. The patients and families were always at the center of it all. That was the main focus of our care and still is. And we must continue to be responsive to the community’s needs and create new approaches to end-of-life care.
What are your next projects?
I’m writing the seventh edition of the textbook, Change in Aging.
What impacts and interests you personally?
I grew up in Wisconsin in a town of about 600 people. We had a big Catholic church. It was a very close, little community. We used to go to dances in dance halls and had a really good time. I love people. I got that from my dad. He had a shop in our garage and was a hunter and a fisherman. He was a great storyteller.
I love to work. I have an obligation to give back. I deeply believe that’s so enriching in life. I teach a Death and Dying class with about 40 students at USF (University of South Florida). I do a lot of processing with them. Those are delightful experiences to be part of people’s lives like that.
In my spare time, I’m into music. I sing at St. Petersburg College in the choir and I cantor. I exercise. I like to kayak.
Is there anything else you’d like to add?
It has been the greatest privilege in my life to have been associated with this hospice all these years and all the wonderful people here. They are the best. It’s a tremendous gift.
Check back this month for part two of our talk with co-author Betty Oldanie.
Support our care
Purchase your Kindle or print copy of A Caring Sanctuary: Suncoast Hospice Forty Years of Caring on Amazon. Proceeds benefit Suncoast Hospice.
Visit our Suncoast Hospice Facebook page to enter the last two giveaways of signed copies of the book.