Those who have lost a close friend or family member know it can be one of the worst days of their lives, laden with feelings of loss, despair and deep uncertainty about the future. For most of us, it only happens a few times.
Ruth Engbers sees people in that state every day.
“It is the most gratifying experience to be able to comfort patients and families in these difficult moments, and yet it can also be the most emotionally taxing type of patient encounter,” she says.
Engbers, a doctoral student in the College of Nursing, is a home hospice nurse. She started her career in oncology, treating people who had or were at risk of developing cancer, before transitioning to palliative and end-of-life care. Both Engbers’ former job and her recent one can take an even greater mental toll on nurses than the already-high emotional price demanded of most in the profession.
“A lot of new nurses and nursing students realize for the first time that there are many times where we can’t solve our patients’ problems, we can’t alleviate their suffering and we just have to be present with them anyway,” Engbers says.
Watching other nurses and nursing students react to unfixable problems informed Engbers’ decision to build her thesis around their experiences. In April, she defended her dissertation, titled “Examining Relationships Among Nursing Students’ Views of Suffering, Positive Thinking and Professional Life,” which evaluated the relationship between nursing students’ personal views of suffering and their professional quality of life.
Working with Dr. Abir Bekhet, professor of nursing, who has published similar research into resilience science, Engbers surveyed more than 150 nursing students using scales that quantify their views on suffering, positive thinking and professional quality of life, hoping to develop strategies to prevent future nurses in high-pressure situations from burning out.
“A lot of learning to cope with these situations, in my personal experience, is just getting over the need to fix things, which is hard because that’s what people want to go into nursing for,” Engbers says. “Once you can recognize that part of your role as a nurse is just to be present with these people, that enables you to make more of a difference.”
The College of Nursing has multiple faculty members and doctoral students that have published research onpalliative and end-of-life care: two areas that overlap often but not always. Palliative care is a resource for anyone living with serious illness and is meant to enhance a person’s care by focusing on quality of life for them and their family. A patient with non-terminal cancer might receive palliative care while undergoing chemotherapy or some other form of treatment that more directly addresses the illness. Hospice, or end-of-life care, commences when attempts at treating the underlying disease have been unsuccessful and the patient is believed to have less than six months to live.
“Research is essential to improve palliative and end-of-life care and quality of life for patients, families, and caregivers in our country and around the globe,” says Dr. Susan Breakwell, chair emerita of the college’s Institute for Palliative and End of Life Care.
This distinction is especially important to Dr. Amy Newman, assistant professor of nursing, as national and international organizations recommend that all patients with life-threatening illnesses have access to palliative care. A key element of palliative care is open communication about what patients and families value most. Conversations about values and goals of care are critical to support decision making and ensuring that patients receive care that aligns with their wishes.
Newman’s research focuses on improving communication among pediatric patients with cancer, their families and health care clinicians. In her 25 years as a pediatric oncology nurse, Newman has found that proper dialogue can be just as important as proper treatment.
“When you ask patients and parents what they hope for, of course they say ‘a cure.’ We are focused on a cure, but we also need to encourage them to talk about what else it is that they hope for and what else is important to them. This helps us to better support them in many ways throughout the course of their illness,” Newman says.
Newman is working with co-investigators at several other children’s hospitals across the country on a research project funded by the National Institutes of Health to study an improved way of communicating with parents of children with cancer whose chance of survival is particularly low. The study partners physicians and nurses to talk with parents about care goals and what is important to them.
“Most often, the illness trajectory in kids is a process that takes place over the course of time,” Newman says. “As we notice patients making the transition from pursuing curative therapies to focusing on quality of life and comfort, we need to have intentional conversations about what they want the end of their lives to look like. Where do they want to be? Who do they want to be around them? What are the things they want to do before they die that are a priority to them?”
These are challenging conversations. “We as a society have definitely not done our kids and our students any favors by making death and suffering a taboo topic,” Engbers says.
Teaching nurses the best way to deal with mortality is tricky. Most students’ views on the subject are informed by their spirituality, which doesn’t always fit neatly into a nursing curriculum. However, ignoring the subject will leave students unprepared for a situation they are likely to encounter in clinical settings.
Newman and Engbers are trying to find a middle path to approach the subject; something that’s non-denominational and not too heavy-handed.
“I’m an educator and I’m not going to try to change students’ foundational, religious views of suffering,” Engbers says. “But I think one of the great findings of my research is that positive thinking…was found to be something that’s a strong predictor of someone’s professional outcome. That’s something we can start incorporating into our undergraduate education.”
“I frame palliative care as thinking holistically about the patient,” Newman says. “What are their values and preferences, and how does that guide our decision making?”
More nurses than ever will need that education. The Center for Advance Palliative Care reports that 94 percent of hospitals with more than 300 beds now have a dedicated palliative care team. There are more than 18,000 palliative care-certified nurses as of 2019, the most recent survey taken by the CAPC.
Those positions will need to be filled by nurses that display resilience, calm and empathy in the face of suffering. The research generated in Marquette’s College of Nursing offers ways to both train these nurses and make it a little bit easier for them to stay in the field.
“Palliative and end-of-life nurses have a really strong sense of self and value the profession for what it can truly bring to a patient and their family,” Newman says.