Dignity for all
New UF center aims to improve palliative care, help people at every stage of illness
By April Frawley Lacey
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.
“We want to eliminate the disease burden and optimize quality of life for humans and animals who have serious illnesses, and their caregivers,” said Wilkie, who came to UF in 2015. “I am really excited about this because we are helping different professionals get the tools they need to meet the needs of the patient and family and to do research to make sure that care is optimized.”
End-of-life care and palliative care are often thought of as interchangeable terms, but palliative care actually focuses on helping people share what is important to them — their goals of care — and manage their symptoms, stress and the side effects of living with a serious condition. For one person, that might mean help managing chronic, unrelenting pain. For another, it might mean getting help with depression from being sick or wanting spiritual guidance.
Although the availability of palliative care in hospitals across the country has grown in recent years — about 67 percent of hospitals have palliative care teams — as many as 1 million people still aren’t getting the care they need each year, according to a national report card produced by the Center to Advance Palliative Care and the National Palliative Care Research Center in 2015.
By bringing together experts from a variety of disciplines across UF, the center aims to change statistics like these. And it starts with better science to not only validate the effectiveness of palliative care, but also discover new ways to offer people care.
“The notion that we need better science to improve palliative care is really important,” Wilkie said. “That science needs to come from many disciplines, not just nursing and medicine. We need all the disciplines bringing their perspectives together so we can improve care for the people who need it. We need to meet the patient where the patient is. We need to work together to help the patient and family.”
Partners in discovery
Mindy C. Miller
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.
“Spiritual care plays a large part in people’s therapy and how they respond,” said Keri Merchant, administrator for UF Health’s Palliative Care Program, which is working with Wilkie on the project.
Soon, Wilkie’s team will begin collaborating with researchers in Turkey to expand her research on an internet-pain assessment tool. The tool allows cancer patients to rate their pain using an online self-assessment tool on a tablet. The information is then provided to nurses and doctors to help them better treat the patient’s pain.
“People who are receiving surgery for lung cancer can develop severe pain that lasts the rest of their life. We need to better understand that pain so we can give them better pain control. In Turkey, this is a big problem,” she said. “We want to make sure this tool is culturally appropriate for people in Turkey.”
Through the expertise of Miriam Ezenwa, Ph.D., R.N., the center is also working to shed light on sickle cell disease, an often-overlooked condition, and the children and adults who live with it every day.
About 100,000 people in the United States have sickle cell disease, which predominantly affects African-Americans. Compared with other rare disorders, such as cystic fibrosis, sickle cell disease is less studied by researchers and often less understood by health care providers. A 2009 article in the journal Pediatrics showed patients with sickle cell disease often have less access to comprehensive, multidisciplinary care than those who have hemophilia or cystic fibrosis.
Sickle cell disease is much less rare in Nigeria, where Ezenwa grew up. When she was a child, one of her neighbors who had the disease passed away during a pain crisis. After becoming interested in researching health disparities while in nursing school, she delved deeper into studying sickle cell disease to honor his memory.
Jesse S. Jones
“I thought maybe this is what I can do for him and for people like him, I can help people here and help people in my home country,” said Ezenwa, an associate professor of nursing and former NIH Sickle Cell Scholar.
With Wilkie, Ezenwa is leading two studies examining relaxation therapy as a way to help patients manage sickle cell pain, both while admitted in the hospital and as outpatients. She’s also working on a study comparing the pain experiences of African-American patients with cancer and those with sickle cell disease.
“We know people with cancer receive lots of empathy, but no one talks about sickle cell disease,” she said. “People with sickle cell disease have pain all their lives.
Some providers don’t believe the amount of pain they say they have. Many providers don’t understand pathology of disease. They have to fight all the time, which makes their pain worse, because when you get angry, your stress hormones rise.”
Laurie Duckworth, Ph.D., ARNP, the UF Health Shands director of clinical research and an associate professor of nursing, is also working to help improve care for sickle cell disease, specifically for children and adolescents transitioning into adult care.
“This is a population that is not well-served,” she said. “In pediatric intensive care units, working with kids admitted for pain crisis, I could see there is a lot of misunderstanding because you cannot see their pain. You can adopt opinions they are seeking drugs. That became a real issue for me.”
Duckworth and her colleagues are working to improve ways to screen children with sickle cell for asthma. Kids with both conditions are more likely to die of acute chest syndrome and often experience more acute pain. One goal of hers, she said, is to coordinate the pulmonology screenings into the checkup with the patient’s hematologist.
“Instead of making the child and their family go to another place, another appointment, let’s screen them right there,” she said. “This will allow us to aggressively manage asthma and provide a lot of education for staff and family.”
Duckworth and her colleagues also are working on a grant for an app to help children with sickle cell disease and asthma track their symptoms. Their goal is to have this information sent to a nurse navigator who can monitor them closely and pinpoint when someone’s breathing is troublesome.
“We have to make our system better,” she said. “We have to have a system that can make it easier for patients and families to get the care they need.”
One way the center is helping researchers collaborate and come up with innovative projects is by bringing together everyone on Fridays to discuss studies being developed, Duckworth said. Duckworth, who has a dual role with the college and UF Health Shands Hospital, often helps her research colleagues find partners in the hospital to help recruit patients for studies.
“It’s about connecting the right people,” she said. “There are about 15 of us in the meeting right now. It’s nice because we also include students who want to learn process, research and study design.”
The next generation
Over the summer, nursing students Lucy Schneider and Caitlin Lach visited UF Health Shands Hospital every week with a bag of shawls, each one knit by hand, to comfort a patient. By the end of the summer, they’d given 80 shawls to patients and their families receiving care from the UF Health Shands Palliative Care Program. But they received so much more in return, say the students, who are part of the college’s Comfort Shawl Project.
“It’s teaching me so much about communications, not only with other health providers, but also with patients and families,” Schneider said. “From an emotional perspective, I have learned how culture and spiritual needs matter. Being involved in these tough experiences of pain and death will shape how I practice.”
Toni Glover, Ph.D., GNP-BC, ACHPN, an assistant professor of nursing, started the project in 2014 after reading about a similar program. A researcher focused on aging, pain and palliative care, Glover was interested in creating more ways for students to experience working with patients receiving palliative care.
“You can teach nurses about death and dying in a didactic way, but it is so different when you care for a dying patient,” she said. “These experiences cannot be taught in a book.”
Since its inception, the Comfort Shawl Project has given a small group of students an immersive view into palliative care each year. The students partner closely with UF Health’s Palliative Care Team, taking part in daily meetings, where the team helps select patients to receive the shawls. The students then meet with the patients and help them pick out a shawl, which are all unique. About 100 volunteers throughout the community knit the shawls provided to patients, Glover said.
“Sometimes nursing education is so much about skills, we don’t focus on how important it is to make a therapeutic alliance with patients,” Glover said.
“When students gift the shawls, they don’t have to do anything but be present and to communicate with patients.”
Schneider remembers walking into a room where the patient was unresponsive, but the family was there. She and Lach explained to the family who they were and offered to let them pick out a shawl for their loved one.
“Immediately one of the family members started crying. It really meant something to her,” she said. “It felt just amazing to be a part of this and sit down and make them feel good, to give them a distraction.”
Glover and her team are studying what students learn from the experience and she hopes to eventually find ways to create opportunities for more students to get similar experiences.
“The results are encouraging,” she said. “This project is making students feel more at ease with death and dying and helping patients with that.”
Last year Glover and Jeannie P. Cimiotti, Ph.D., R.N., FAAN, an associate professor of nursing and the Dorothy M. Smith Endowed Chair and director of the Florida Blue Center for Health Care Quality, led a course for UF Honors students about end-of-life, advance care planning and the differences between palliative and hospice care. The course was popular and they ended up with almost twice as many students as planned.
“Eventually, this may be a course we could do for all nursing students,” she said. “It would be a way to discuss palliative care and end of life with the whole class.”
Goals for the future
When Wilkie imagines what things will be like five years from now, she sees an endowed center, named for someone committed to improving care for people and animals with serious illness and their caregivers. She hopes the number of principal investigators working on funded research will be multiplied, too.
“I’d like to see a number of endowed professors and chairs,” she said. “I’d like to see endowed scholarships to help undergraduate students engage in research during school breaks and funding for Ph.D. students.”
For today, her goals are to tackle projects that can help move palliative care knowledge into practice immediately. She’s looking for funding to help update a toolkit developed in concert with the Robert Wood Johnson Foundation. The toolkit, which simply needs a technology upgrade, is designed to help educators and learners get all the information they need about palliative care and end-of-life issues.
“This program is extensive, and it is one of the premier educational programs on end-of-life and palliative care,” she said. “All it needs is a technology update. That is a tangible thing that can be done tomorrow.”
Information courtesy of the Center to Advance Palliative Care
In addition to developing new ways to better care for patients with serious illness and training the next generation of providers, Wilkie hopes the center can help make inroads on changing how we talk about death, dying and palliative care, too.
“We need to get more comfortable with it,” she said. “We will all die. Death is part of life, but we want it to be with dignity and comfort and on the terms of the individual. You should be able to make the decisions that are important to you.’’
But mostly, her goals for the center all come back to one thing: helping people get the care they need. No one should live in pain, she said.
“For those whose friends, loved ones or pets died without the kind of comfort and peace they wanted, I want to make sure that does not happen to anyone else,” she said. “Everyone deserves dignity and comfort.”
