Sara L. Douglas receives $3.3 million NIH grant to study end-of-life care

A woman with gray hair cares for an elderly woman at right

Sara L. Douglas, PhD, RN, the Gertrude Perkins Oliva Professor in Oncology Nursing at the Frances Payne Bolton School of Nursing, has been awarded a $3.3 million Research Project Grant (RO1) from the National Institutes of Health (NIH) National Cancer Institute (NCI) for her research aimed at improving end of life care for patients and caregivers. Here are five questions about this grant-funded research with Dr. Douglas:

Headshot of Sarah Douglas smiling.

Name of Grant
Improving Understanding of Quality End of Life Care Using a Dyadic Approach

Amount and Time
$3,279,408 (5-year study)

Funding Agency
NIH/NCI (National Cancer Institute)

Five Questions With Sara Douglas

Please summarize your research and expected outcomes:
The aim of this study is to improve our understanding of factors that influence quality end of life care. We are examining the concept of end of life care in terms of quality care that benefits the patient as well as the caregiver. For example, care that the patient receives at the end of life that is consistent with their wishes and care that does not leave the caregiver (after death) with feelings of regret or unresolved grief.

What do you hope to accomplish with the grant funding?
We aim to enroll 300 patient-caregiver dyads over the 5-year study period and obtain data from them regarding whether the patient is receiving care that is consistent with their wishes, whether patients and caregivers assessment of clinical factors (such as goals of care) are in alignment, and post-death, whether the caregiver is experiencing regret or complicated grief related to the end of life experience for their loved one. Information from this study will help in the development of interventions for both patients and their caregivers to improve quality end of life care for the patient and post-death experiences for the caregiver.

Why are you interested in this research area?
The delivery of quality end of life care is an important component of cancer care and involves not only the patient but their family as well. Decades of research have shown that current approaches to the delivery of quality end of life care have not been successful in providing care that is consistent with patients’ wishes or in enhancing family caregivers’ post-death adjustment. It is important that we provide the needed quality care and support at the end of life for both the patient and caregiver.

What can nursing students learn from your research?
Health care providers (including nursing students) may be involved in caring for persons with life-limiting illnesses. Many in the healthcare field are uncomfortable with discussing end of life care and, as a result, do not adequately prepare patients and their families nor do they determine from the patient what their end of life care wishes are. Nursing students can learn methods of eliciting such information from patients and caregivers and can benefit from findings from this study.

Anything else you'd like to add?
I want to recognize my co-investigators for this project, including Karen Lyons, PhD, of Boston College; David Bajor, MD, of University Hospitals-Seidman Cancer Center; and Douglas Gunzler, PhD, of MetroHealth Medical Center.