t the end, there was peace. As he lay dying, the man was free of the pain of his cancer and from not being able to eat anymore. His wife was calm. His children were by his side where his grandchildren were playing. All were making memories.
It was at this moment, taking care of this man and his family, that Diana Wilkie, Ph.D., R.N., FAAN, knew death could be different. That helping people deal with pain could and should be different. That it wasn’t just about treating a person’s condition but also treating how they experienced it.
“I became a volunteer hospice nurse so I could take care of him,” remembered Wilkie, the Prairieview Trust-Earl and Margo Powers Endowed Professor at the UF College of Nursing. “He wanted to die at home so we asked for a hospice referral, but no one could take him. So, I trained to be his nurse. That experience let me see that dying could happen in a different way. His wife was not afraid to give him the medicines he needed. He had total comfort.”
Now an international expert in pain management and palliative care, Wilkie is leading a new interdisciplinary center at the University of Florida that aims to give this type of experience to any patient — human or animal — living with a serious or life-threatening illness.
Everyone deserves not to just be treated for their health conditions, but to also have their symptoms and pain managed and to have their wishes respected, Wilkie said. Through the Center for Palliative Care Research & Education, Wilkie and colleagues across UF hope to transform care for people living with serious conditions, not only through research but also through training the next generation of palliative care providers and public education.
With 37 members — and counting — and close partnerships with UF Health’s palliative care team and the UF Health Cancer Center, the center is already home to projects that could improve care for patients.
In September 2016, Wilkie and two other co-principal investigators at Northwestern University and Rush University Medical Center received a $3 million grant from the National Cancer Institute and the National Institute of Nursing Research to study dignity therapy at six sites in the U.S.
“Dignity therapy involves trying to help people take stock of their lives,” Wilkie said. “At all stages we want to take stock, what we’ve we accomplished, what are our goals, what are our regrets? Do we need to say I’m sorry? Do we need to share words of love? Pain control is highly desired by 95 to 100 percent of patients, but patients with cancer say being at peace with God is even more important to them than being free of pain.”
The study seeks to find out who should lead this therapy, nurses or chaplains, and will also examine what role dignity therapy has on patient outcomes.