People living with heart failure or chronic obstructive pulmonary disease (COPD) often face complex symptoms, difficult treatment decisions, and emotional challenges long before they are hospitalized. A new research project led by Indiana University School of Nursing assistant professor Lyndsay DeGroot, PhD, RN, aims to bring palliative care directly to patients in their homes through a telephone-based program that could make supportive care more accessible for people living with serious chronic illness.
To support this work, DeGroot has received a NIH-National Heart, Lung, and Blood Institute (NHLBI) five-year K23 Career Development Award totaling $916,000. The award will fund her project, “Implementing Community-Based Palliative Care for Adults with Heart Failure or Chronic Obstructive Pulmonary Disease.”
DeGroot's study focuses on implementing the Advancing Symptom Alleviation with Palliative Treatment (ADAPT) program, an evidence-based telecare intervention led by nurses and social workers that provides basic palliative care, including symptom management, emotional support, and advanced care planning, through regularly scheduled telephone or video sessions. In a previous randomized clinical trial, ADAPT significantly improved quality of life, reduced depression and anxiety, and enhanced disease-specific health outcomes for participating patients compared to those who didn’t receive ADAPT.
"Nurses and social workers are uniquely equipped for this type of care and share a deep commitment to walking alongside patients and families throughout their disease journey," DeGroot said.
Inspired by patients
DeGroot’s passion for the work is rooted in her experience as an ICU nurse, where she cared for patients who could have benefited from this type of support long before they arrived at the hospital.
"Navigating a serious illness can feel like an overwhelming maze," she said. "Having people who can walk alongside you every step of the way who truly know you, understand your priorities, and can serve as 'tour guides' through the healthcare system can be so incredibly helpful. I believe all of our patients have the right to know about and have access to the type of proactive, person-centered support that palliative care provides, and decide if it's the right thing for them."
Expanding access to palliative care
One of the greatest challenges facing palliative care is workforce capacity. While many patients could benefit from additional support, there are not enough specialty-trained palliative care clinicians to meet demand, DeGroot said.
“A program such as ADAPT empowers nurses and social workers to deliver primary palliative care in a scalable way while collaborating closely with primary care, cardiology, pulmonology, and specialty palliative care clinicians to address patient needs,” she added.
The grant will allow DeGroot to study how ADAPT can be expanded to reach more patients.
"Although we know ADAPT improved quality of life, depression, and anxiety in a previous research study, implementing it in the real world is a whole different story," DeGroot said. "The K23 provides an opportunity to investigate how to implement ADAPT for patients with heart failure or COPD in partnership with several IU Health Advanced Heart and Lung Care clinics, including outpatient clinics at IU Health Methodist and IU Health Bloomington Hospitals, laying a foundation for future scaling of this program to more patients who might benefit."
Listen. Read. Learn.
Read DeGroot's findings in the Journal of Pain and Symptom Management, and listen to her Geriatrics and Palliative Care Podcast.The project builds on DeGroot's previous research examining the experiences of people living with heart failure outside the hospital. That work found that many patients face significant physical, emotional, and practical challenges long before they require acute care in the hospital. Yet palliative care is often introduced only after a hospitalization or health crisis.
"One of the next critical steps for our field is learning how to best deliver palliative care outside of an inpatient hospital stay to everyone who would benefit," DeGroot said.
She emphasized that ADAPT is not intended to replace specialty palliative care services that are provided by a specialty trained team of physicians, advanced practice providers, nurses, social workers, chaplains, pharmacists, and additional interdisciplinary team members. Instead, ADAPT is designed to complement existing care or extend the reach of palliative care to areas with limited or non-existent access—preserving specialty palliative care services for patients with the most complex needs.