The teenage and emerging adult years are associated with beginnings — first dates, driver’s licenses, prom, graduation and career. They are a time to look to the future and dream big. They are not thought of as a time for adolescents and young adults to consider the end of their lives.
Yet, for young patients with cancer and other terminal illnesses, that’s often the reality. While their peers are getting ready for prom, they’re enduring chemotherapy. Instead of college applications, they’re having difficult conversations with doctors and loved ones. Rather than looking ahead to career, marriage and parenthood, they’re worried about making it through the next month.
Understanding adolescents’ and young adults’ acceptance of their situation and willingness to discuss it is important, both for caregivers and for family members who are often unsure of the emotional support their loved ones need.
Research conducted by the Wayne State University College of Nursing could help caregivers and families understand when adolescents and young adults with advanced or terminal cancer are ready to talk about their situation. The research is a collaboration between WSU assistant professors Cynthia Bell, Ph.D., research scientist, and Jessica Spruit, D.N.P., an acute-care nurse practitioner specializing in pediatric oncology.
“When I worked with pediatric oncology patients before going back to school, what bothered me the most were when patients were processing the fact that they were going to die and didn’t have someone to talk to and were afraid to burden their family,” Bell said. “They’re trying to protect each other from the emotional pain of death and separation.”
Moved by these discussions, Bell focused her dissertation on understanding how young patients engage in end-of-life conversations and whether those discussions help improve quality of life. Her conclusion? The conversations were not readily happening and to foster these difficult conversations, it was necessary to understand when patients were ready to discuss their illness, treatment, fears and other concerns.
“They go in and out of this open-and-closed awareness. When they are openly acknowledging their incurable disease, then they will process more emotional conversations. And when they’re in closed awareness, they want to talk more about their hopes, dreams and future and what they want to do with their life,” explained Bell
Understanding readiness
Bell and Spruit discovered that while discussions about end-of-life concerns with adolescent and young adult patients were helpful, the discussions were often not happening between patients and those around them, including medical caregivers, family and friends.
“In my D.N.P. project, we surveyed health care providers in pediatric oncology, and over 99 percent said that pediatric palliative care helps patients and families,” said Spruit. “We believe palliative care facilitates these critical conversations, yet over 50 percent of those surveyed said palliative care was ‘never’ or ‘rarely’ involved in pediatric oncology cases. We are not consistently getting these resources to the patients, so this research is filling that gap of how we talk to them and learn what their goals are. How do we empower them to live until they die?”
Bell developed a tool to measure adolescent and young adult readiness to talk. It captures concerns such as their awareness and acceptance of their life-threatening illness and their ability to talk about their condition and the associated grief and emotion with family or professional caregivers. Using an interactive, game-styled system, the young people describe whether the statements resonate with them and are applicable to their situation.
“They share their stories and that helps us see what barriers are involved and what facilitates the conversation,” said Bell. “Our goal is to develop an intervention within clinical practice that can help engage patients and health care providers in conversations to help them move along with this iterative process of becoming more prepared.”
Speaking with young patients about such sensitive topics requires empathy and an ability to understand how much they are willing to open up. The researchers use a card system where the adolescents discuss how much various statements apply to them; if there are statements that the participants are not ready to talk about, they can place them in a “stresses me out box” and choose not to discuss them.
“We’re very mindful of the ordering of the questions,” said Bell. “We sequence the questions carefully, ask permission when it gets to the sensitive items and then proceed based on their response.”
Bell and Spruit said the participants have been open and honest, often willing to discuss their concerns and fears beyond the allotted time. Spruit said that, for many participants, this is their opportunity to make a difference.
“We empower them by saying, ‘You’re the expert in this. You can teach us,’” she said. “They want to build a legacy, they want to do something and make their mark. One of the leading motivators is that people in the future will benefit from their participation. We have so much to learn from them.”
Often, Bell said, the patients are more than willing to talk; historically, it’s often been care providers who have been hesitant to bring up end-of-life issues with young patients in a desire to focus on healing and positivity. One goal of the research is to better understand patients’ willingness to talk so that nurses and other care providers feel comfortable initiating conversations.
“As health care professionals, we are so afraid that if we talk about it then we’re taking away their hope,” Bell said. “There’s this overwhelming fear that we’re going to do harm if we talk. But we’re learning that if the adolescent or young adult knows that it’s okay to talk to us, they will. It’s in the not asking that we’re left without answers.”
Spruit’s experience as a nurse practitioner has shown the need for this research firsthand. When parents, caregivers and others do not engage in these conversations with young patients, caregivers cannot always give them the best care or prepare them for difficult — literally, life and death — conversations and decisions.
“One of the most challenging situations I’ve encountered is when life support is withdrawn and we haven’t even discussed end- of-life care and wishes with the adolescent or young adult. Those stories fuel us because they continue to highlight this gap and an opportunity to enhance the care we deliver to these patients,” she said. “I’m very passionate because I see that there’s an area for improvement. Clinically, I recognize this barrier and because I know of Cindy’s work, I can help families understand what the opportunities are and help integrate that into the care we provide.”
In addition to enhancing how providers might enhance clinical care for adolescent and young adult patients, the research also demonstrates the emotional benefit these conversations might provide to patients and families by allowing them to voice their fears and hopes.
“You fight so hard for a cure — and we should — but at the same time, we should allow patients to process the emotional burden and help facilitate some of their hopes and dreams,” Bell said. “I have seen where a young person is in their hospital bed at home, dying, but their principal and others come and have a graduation service in their living room. I had one patient whose mom came to me after his funeral service and said, ‘It was just like he wanted it to be, all because we talked about it.’
“It’s all about living until you die. It’s not ‘Let’s talk about death and dying because you’re dying’; it’s ‘let’s talk about what you want out of life with the time that you have left.’”
Bringing family members into the conversation is essential — and will be a larger focus of future research. One of the reasons adolescents and young adults often don’t initiate end-of-life conversations is not because of their own reticence but because of concern for their loved ones.
“One of the items we discuss is, ‘I need to be strong for me and my family.’ When we get to that, the patients generally say ‘that’s absolutely true.’ But then the conversations go into ‘I don’t want my family to be sad’ and there are a few who say, ‘I’m doing this because I have to be strong for my family because I don’t want them to see my sadness, but it’s hard on me because I’m not sharing that,’” said Bell. “It’s figuring out if the family can handle it and if the patient knows that the family can indeed handle it, then maybe we all could be on that page.”
“As a clinician on that side of tiptoeing around things and being cautious and reluctant to talk about it, this is what I love about partnering with Cindy,” said Spruit. “I believe that she will create something that gives us all the strength to approach these conversations. I think these conversations need to happen but we don’t currently have the right tools and resources. If you can arm providers with a tool and give them a guide, I think the care we deliver will be so much better.”
A unique collaboration
Research on such a sensitive topic requires not only deft clinical care and empathy but also the ability to communicate with patients in a way that leads to conversations that further knowledge and enhance care. The College of Nursing, with its commitment to interdisciplinary research and collaboration, provides an ideal setting for this study. Not only is the college located near health care centers with renowned pediatric oncology units, but the breadth of knowledge within the college also makes a unique partnership possible.
Spruit’s clinical connections will be of assistance as the research expands. The team is currently awaiting news regarding potential funding of an NIH grant that would expand their research to include patients, clinicians and parents to gain their perspectives about readiness to engage in conversations. The research team is also collecting valuable insight from patients at the Children’s Hospital of Michigan and Karmanos Cancer Center in Detroit and Helen DeVos Children’s Hospital in Grand Rapids. In the coming months, they will also expand the project to C.S. Mott Children’s Hospital in Ann Arbor. This additional site means that data is being collected from all three freestanding children’s hospitals in the state of Michigan and provides greater access to a limited population of patients from different socioeconomic statuses.
Spruit’s clinical expertise provides a pathway to patients as Bell’s Ph.D. research provides a ground-level understanding of their patients’ needs. When dealing with persons with terminal illnesses, Spruit’s D.N.P. background is essential to assuring families and patients of the investigation’s merits and building trust between researchers and caregivers.
“Jessica provides the hands and feet to get us into this very sacred area. I feel like there are so many gatekeepers because the clinician doesn’t want their patient to be harmed. They’re already going through enough, so you don’t want just anyone coming off the street and asking questions,” Bell said. “Jessica knows I’m legit and she’s respected by her fellow clinicians, so she helps open those doors. She plays an important role in accessing the population, which is half the battle in palliative care research, especially in pediatric palliative care.”
The two work in a “head and hands” collaboration, in which Bell’s research background identifies the need and develops the questions that will help create a solution. Spruit, with her clinical background, is key to implementing the findings, working closely with nurse practitioners, patients and family members to translate the solution in a real-world setting. However, Bell is quick to acknowledge that the differences are not so clear-cut. She also has a background in clinical care, and Spruit has adapted quickly to the research side.
“What’s unique with our relationship is that Jessica wants to know how to do the qualitative analysis. She goes beyond what her role is and says ‘I want to learn, so teach me this,’” Bell said. “And when she helps code, she brings this other hat, this clinical perspective, so it becomes a very rich analysis. If these data were analyzed only by Ph.D.-prepared researchers, you wouldn’t have that piece.”
Having an “in” with the clinical arena also means the solution developed through the research can be implemented much quicker, a major benefit to patients.
“What happens traditionally with research is that it takes 20 years until you’re affecting the population,” said Bell. “It’s so frustrating and there’s such an urgency that we both feel, so with this research, it’s like real-time translation, which makes me feel like, at least for the small population in our study, that some people are benefiting already.”
A model to follow
Spruit and Bell believe this partnership could serve as a model for other nursing schools.
“It’s this really powerful collaboration that we’ve formed,” said Spruit. “I’ve learned so much from Cindy; I never thought I would learn this much. I came here to teach and coordinate a program; I had no idea I would get the chance to participate in research like this and actually make a difference in the way we care for these patients.”
The clinical connection also ensures that researchers keep human faces in mind. Both researchers are committed to caring for patients with life-threatening illnesses and their families. The next study will provide a better understanding of how to initiate and sustain developmentally appropriate end-of life and palliative care conversations across time among patients, their parents and clinicians within clinical settings. The research team will also gain valuable insight on patient, parent and family perceptions of optimal quality-of-life and end-of-life outcomes.
“We have seen the suffering and we want to make it better,” said Bell. “That passion fuels us to step out of our own traditional, standard roles that society has set for the D.N.P. and the Ph.D. This collaboration has led to exciting and unexpected clinical research opportunities.”
This story originally appeared in the fall 2018 edition of Urban Health magazine.