“All We Wanted to do Was Say, ‘Thank you.’”

Editor’s Note
Ten years ago, GetWellNetwork crossed paths with a family whose mission was pure and whose commitment was profound. They were on a mission to recognize nurses for the extraordinary compassionate care they provide every day. It was a goal born out of their own loss. The movement started by the founders of The DAISY Foundation and The DAISY Award began as an expression of their own eternal gratitude to the nurses who cared for their son and husband during his eight-week hospital stay.

Today, on what would be J. Patrick Barnes’ 52nd birthday, we’ve asked DAISY co-founders Mark and Bonnie Barnes and Tena Barnes Carraher to share what the foundation has come to mean to each of them 18 years later, and what hopes they have for its future. In hearing from each of them, it’s clear that The DAISY Foundation’s unanticipated impact on the nursing profession has left an indelible mark on their hearts. After all, all they wanted to do was say, “Thank you.”

But first, a little background.

It is often the soft voices of hope dressed in hospital scrubs that help families through the darkest hours of their lives.

Patrick and daughter Riley Barnes, 1999

 About J. Patrick Barnes
One morning in late 1999, 33-year-old J. Patrick Barnes awoke to blood blisters in his mouth. The two-time survivor of Hodgkin’s Disease was quickly admitted to the hospital and diagnosed with Idiopathic Thrombocytopenic Purpura (ITP), a rare autoimmune disease that affects the blood’s ability to clot normally. Within eight weeks of diagnosis, Patrick lost his life to complications of the disorder. He left behind his wife Tena, their 14-week-old daughter Riley, his father Mark and stepmother Bonnie. Profoundly touched by the nursing care that Patrick received during his hospitalization, his family wanted to do something to express their gratitude for the extraordinary compassion displayed. “They truly helped us through the darkest hours of our lives with soft voices of hope and strong loving hugs that to this day, we still feel,” said Mark Barnes.

“They truly helped us through the darkest hours of our lives with soft voices of hope and strong loving hugs that to this day…we still feel.”

How do you say, “thank you?”
While discussing how to honor Patrick’s memory, his family agreed that first and foremost, they wanted to find a way to thank nurses for the gifts they give to patients and their families every day. In November 1999, within days of his passing, The DAISY Foundation was born. DAISY is an acronym for “diseases attacking the immune system.” They created The DAISY Award for Extraordinary Nurses and launched a pilot of the recognition program at the Seattle Cancer Care Alliance where nurses cared for Patrick during the last weeks of his life.

Nearly two decades later, the efforts of Patrick’s family continue to have a powerful, far-reaching effect. His spirit lives on in the movement they started. The DAISY Award provides a way for patients and families to share stories of how nurses impact their care experiences. The award not only honors the often “unsung heroes” of the nursing profession, it has become a strategic tool for nurse recruitment and retention used by healthcare facilities around the U.S. and beyond.

Pat’s positive spirit and infectious sense of humor touched everyone he met. He never turned his back on anyone in need, instead always reaching out to offer comfort. Not unlike the nurses recognized by the foundation created to honor his legacy.

GetWellNetwork: Mark, it’s been 18 years since Patrick passed away and your family started The DAISY Foundation. When you look around at all that The DAISY Foundation has accomplished in that time, is it what you and your family first envisioned for it?  

When we started the foundation, all we wanted to do was to say “thank you” to nurses. Today, that is still our focus. Nurses do extraordinary things for patients and families every day. Most of the time, I don’t think they really understand the impact they have — even the little things they do can make a great difference.

For example, I’ll never forget Pat’s night nurse, Dan. He and Pat shared a passion for sports trivia. Dan also knew that Pat struggled to sleep because his mind would spin. Each night, he stopped by Pat’s room to throw out a trivia challenge. The challenges the two of them tossed back and forth distracted Pat, and while he may not have easily fallen asleep, the banter helped ease his anxiety.

In the morning, Bonnie and I would come to Pat’s room and find him peacefully resting at last. Dan’s compassion made a big difference for Pat and for us. Pat was in great hands when Dan was his nurse and that gave us some peace of mind. It meant a lot that he took the time to know my son as a person and not just another patient.

That’s just one example. There are so many reasons why we want to continue to thank nurses. Frankly, we just didn’t realize the desire to express gratitude for all that nurses do for patients and families would be so widespread.

GetWellNetwork: Bonnie, picking up where Mark left off, tell us how The DAISY Award has grown to be more than just your family’s way of showing gratitude on Patrick’s behalf?

Well, the numbers alone are the real testament to the impact the program is having on the nursing profession. Today, over 3,000 healthcare facilities and nursing schools in all 50 states and in 17 other countries honor nurses with The DAISY Award.

Perhaps the most important number to us is how many times a patient, family member or colleague has taken the time to say “thank you” to a nurse by nominating them for The DAISY Award: over 1 million. In 2017, over 52,000 of those “thank yous” came through GetWellNetwork’s platform.

In February 2001, we presented The DAISY Award for the very first time at the University of Washington. Back then, our hope was to partner with 10 hospitals on this program. We had no idea it would provide so much meaning and value to so many — from nurses and healthcare organizations to patients and their families especially.

Nurse leaders have taught us the strategic value of The DAISY Award, and they have taken it much further than we ever imagined it would go. The program affects nurses’ job satisfaction, retention, teamwork, pride, organizational culture, healthy work environment, and more.

GetWellNetwork: Tena, tell us about the experiences you had that inspired your gratitude to nurses?

Patrick became sick just six weeks after the birth of our daughter Riley. What had been the happiest weeks of our lives quickly turned into the worst. I was torn between wanting to be with my husband in the hospital and needing to be home to care for my newborn baby.

Bonnie and Mark were at the hospital when I couldn’t be. Pat’s nurses worked with them to ensure I was involved in all of the decisions — big and small — related to Pat’s care and treatment. We had a sign on the wall in Pat’s room that I think Bonnie still has. It said, “Tena’s in charge.”

The nurses would call me, explain what was going on with Pat, and make sure the doctors talked to me. His nurses did everything they could to help me through a terrible time. It was if they were my nurses, too. So, yes, I continue to be deeply grateful to nurses for helping me as a young, new mom during a very sad time. They made an unbearable experience a little more bearable.

GetWellNetwork: It’s clear that DAISY’s work is very personal to each of you. What is your vision for the future of the foundation?

DAISY will always be a family foundation, even after Bonnie, Tena and I are gone. We have a fantastic staff and a dedicated board, and we look at them all as our family. Our dedication to expressing gratitude to nurses for their compassionate care with The DAISY Award will continue, as will our work to support nurses by keeping compassion front and center in healthcare.

As Mark said, it’s important to us that DAISY’s voice for compassionate care stays present in healthcare. The DAISY Award is a form of meaningful recognition, one of the important parts of a healthy work environment for nurses.

So, we will keep building the case for meaningful recognition, ensuring the evidence of impact is clear. We can never recognize nurses enough. They do extraordinary things every day. Recognizing them once a year during National Nurses Week just isn’t enough celebration of those in this remarkable profession.

Our vision is to make sure that no matter where nurses work around the world, they know how important they are to all of us for who they provide care. The DAISY Award is one way we show this to them.

Patrick’s story will always light our path. We know he would have loved this work, and his gratitude to nurses will live forever, as does his wonderful spirit.

We hope our daughter Riley, now 18 and a freshman at the University of Georgia, will one day join us in this mission of ours to thank nurses around the world for their extraordinary compassionate care.

GetWellNetwork: Thank you, Mark, Bonnie and Tena. Your mission is inspiring. GetWellNetwork is so proud to support your efforts. Here’s to the next 10 years together!