When Joe went to the hospital with congestive heart failure, a nurse didn’t just ask him how he was. She also asked him who he was. Joe says that personal connection helped him cope with his mortality and terminal diagnosis.
“It was great to share my story. I enjoyed talking about my life. That way, I’m not just a number or a diagnosis… I’m a real person.”
Healthcare professionals in Colorado are now asking patients about their life stories as part of a study by Heather Coats, PhD, APRN-BC, Director of research for the Hospice and Palliative Care Nurses Association, palliative care nurse practitioner, and assistant professor at the University of Colorado College of Nursing.
“If you know the patient, then you can be a guide for them and their families in a shared decision-making process during a time when they’re making the hardest decisions of their life,” said Coats. “In palliative care, we truly think about the whole person, their beliefs, values and preferences; what matters most to them and how we can get them engaged in their own care.”
Dr. Coats knows connecting with patients works. Her research in person-centered narrative interventions and 28 years of clinical experiences caring for people suffering life-threatening and terminal illness proves it.
“We all die. So, we are here to help you think about what’s most important to you in the time you have left, to offer you support and get you the spiritual, psychological, social and even financial resources that you need,” said Coats.
Since getting to know the whole person works so well in palliative care, in 2019, Coats decided to study if it was possible to also use person-centered narrative interventions in the fast-paced, often hectic acute care environment, where she says most patients are less known.
“The person is most lost in the acute care system. They are voiceless. If we don’t incorporate the person in making decisions, then we are causing distress. We are harming people in our fragmented, dehumanizing system. That’s why there needs to be a holistic approach to care,” said Coats.
She believes healthcare clinicians need to hear patients’ narratives to make better treatment decisions and to engage them in their own health care.
“If the patient is not part of the team, they go home and say ‘I’m not going to listen to them because they didn’t ask me about me.’ How can we expect patients to adhere to medication regimens if we don’t know about them? Simple questions that put the patient first can tell a provider a lot, like if they can afford the medications being prescribed and if they have access to food to take with their meds.” Research shows that nearly 37% of prescriptions written for chronic conditions go unfilled.
Helping Patients Heal
The 2019 feasibility study found just like in palliative care, person-centered narrative interventions work in the acute care system, and help patients participate in their own healing.
In the study, healthcare workers asked patients open-ended questions such as ‘Tell me about yourself,’ and “Tell me about your illness.’ Instead of ‘What’s the matter?’ patients answered ‘What matters to you?’ After the patients reviewed and edited their stories, they were uploaded into their electronic health records for all of their clinicians to access and read.
Nurse participants in the feasibility study described the 2020 study results as ‘eye opening’ and said it gave them a deeper understanding of what their patients were going through emotionally and physically.
“When we talked about his story, and it was no longer like a checklist. It became more personal. I understood this is more of who you are—you’re not just a patient in room 300,” said one nurse after the study.
Other participating nurses described how connecting with patients expanded their care.
“Suddenly, we realize that someone has a drug or alcohol problem—you would realize that someone’s kids are not safe at home…Having his story connected the dots for me.”
Making it Personal
Now that Dr. Coats knows person-centered narrative interventions work in acute care, she is launching a new study to learn how well it works in the outpatient setting. The pilot is titled: Integration of Person-Centered Narratives in an Outpatient Palliative Care Clinic.
She presented her program of research to health care professionals around the world earlier this month during the annual National Nursing Research Roundtable at The National Institute of Nursing Research.
“My dream is that other researchers like myself say, ‘This matters.’ How can we re-humanize the way we deliver care and bring the person into the center of the healthcare team?
I want to keep this going because it’s important to deliver person-centered care,” Coats said.
Her three-year pilot study is halfway completed. Dr. Coats plans to release the efficacy results when complete.
Get to Know Heather Coats, PhD, APRN-BC
Dr. Heather Coats is an NIH/NINR funded Assistant Professor at the University of Colorado College of Nursing, where her program of research focuses on improving psychological-social-spiritual well-being for person’s and their families living with serious illness through the development of and testing of person-centered narrative interventions that are then integrated into the person’s electronic health record. For this work, she has been consistently funded by the National Institutes of Health since 2014 and in January 2020, was awarded a two-year Cambia Sojourns Scholar Award from the Cambia Health Foundation.
She is also the Director of Research for the Hospice and Palliative Care Nurses Association and is trained clinically as a Palliative Care Adult Nurse Practitioner. She has more than 28 years of clinical experience in oncology, palliative and hospice care.