A meta-analysis of studies involving 33,541 cancer patients evaluates the relationship between advance care planning and aggressive vs. comfort-focused end-of-life care. The study, led by Kristin Levoy, PhD, MSN, RN, of the Regenstrief Institute and Indiana University School of Nursing, found a general trend toward less aggressive and more comfort-focused end-of-life care among cancer patients who had engaged in advance care planning, compared to those who did not do so.
Advance care planning is a dynamic process to help prepare people for future decision-making with the goal of ensuring that individuals receive care at the end of life that is consistent with their preferences. Rather than a simple process of providing forms to be filled out and never reviewed, the research team noted the importance of the communication that takes place as a part of the ongoing approach to advance care planning across disease trajectories.
“Our findings demonstrated that efforts to directly engage patients and caregivers in the communication components of advance care planning were a crucial aspect of improving the end-of-life care that patients with cancer received,” said Dr. Levoy.
“You could think of advance care planning as similar to having car insurance,” she added. “The idea of advance care planning is that you’re protecting yourself for future eventualities that may or may not occur, and you’re documenting what your healthcare preferences would be if you were to lose decision-making capacity and were unable to speak for yourself. The intention is that any healthcare we deliver should be patient-centered, that is, guided by the patients’ preferences and goals and consistent with their values.”
Cancer often is characterized by a protracted chronic illness with fairly high levels of functioning and a steep decline in capabilities and increase in symptoms in the last six months of life. Patients generally have time to prepare for the end of life and can do so in the form of advance care planning to later inform decisions.
“Advance care planning works in this illness population,” Dr. Levoy noted. “We found it positively impacted the decision of patients and caregivers facing cancer to avoid hospital and intensive care unit admissions and to complete do not resuscitate orders at the end-of-life. So, it worked. Compiling findings from studies involving tens of thousands of patients with cancer allows us to understand the value that advance care planning provides for patients and caregivers across the disease trajectory.”
Cancer patients who engaged in advance care planning were 50 percent more likely to complete do not resuscitate orders than those who did not.
The meta-analysis found advance care planning also was associated with significantly lower odds of various indicators of “aggressive” end-of-life:
- intensive care
- hospital admissions
- delayed hospice referrals
- hospital death
The meta-analysis revealed the following outcomes were not impacted by advance care planning:
- hospice use
- cardiopulmonary resuscitation
- emergency department admissions
- mechanical ventilation
End of life preferences are highly individualized. The study authors note that evidence suggests that persons with serious illnesses generally prefer comfort-focused care and desire to avoid aggressive interventions.
“This meta-analysis is important because it provides clear evidence that advance care planning helps patients with cancer receive goal concordant care,” said Regenstrief Institute Interim President and Chief Executive Officer Susan Hickman, PhD, a study co-author and an expert on advance care planning. “While there is still a lot of work that needs to be done to improve advance care planning implementation, our findings confirm that ongoing conversations about goals, values, and preferences are essential to help prepare patients and their caregivers for end-of-life decision-making.”
“Don’t Throw the Baby Out with the Bathwater: Meta-Analysis of Advance Care Planning and End-of-life Cancer” is published in the peer-reviewed Journal of Pain and Symptom Management.
Authors and affiliations
Kristin Levoy 1 , Suzanne S. Sullivan 2 , Jesse Chittams 3 , Ruth L. Myers 4 , Susan E. Hickman 5 , Salimah H. Meghani 6
1 Department of Community and Health Systems; Indiana University School of Nursing; Indianapolis, IN; United States; Indiana University Center for Aging Research; Regenstrief Institute; Indianapolis, IN; United States; Indiana University Melvin and Bren Simon Comprehensive Cancer Center; Indianapolis, IN; United States.
2 School of Nursing; University at Buffalo; State University of New York; Buffalo, NY; United States.
3 BECCA (Biostatistics, Evaluation, Collaboration, Consultation & Analysis) Lab, Office of Nursing Research; University of Pennsylvania School of Nursing; Philadelphia, PA; United States.
4 Department of Community and Health Systems; Indiana University School of Nursing; Indianapolis, IN; United States.
5 Department of Community and Health Systems; Indiana University School of Nursing; Indianapolis, IN; United States; Indiana University Center for Aging Research; Regenstrief Institute; Indianapolis, IN; United States; Indiana University Melvin and Bren Simon Comprehensive Cancer Center; Indianapolis, IN; United States.
6 New Courtland Center for Transitions and Health, Department of Biobehavioral Health Sciences; University of Pennsylvania School of Nursing; Philadelphia, PA; United States; Leonard Davis Institute of Health Economics; University of Pennsylvania; Philadelphia, PA; United States.
During the conduct of this study, Dr. Levoy was supported, in part, by a Future of Nursing Scholars Award from the Robert Wood Johnson Foundation, a Doctoral Degree Scholarship in Cancer Nursing (131753-DSCN-18-072-SCN) from the American Cancer Society, and a National Institutes of Health’s National Institute of Nursing Research’s Ruth L. Kirschstein National Research Service Award program (T32 NR009356). Dr. Sullivan was also supported, in part, by a NIH/NINR Ruth L. Kirschstein Predoctoral Individual National Research Service Award (F31 NR016394), the National Library of Medicine National Institute of Aging Institutional Grants for Research Training in Biomedical Informatics (T15 LM012495), and an NIH/NIA award R03 AG067159. Dr. Hickman is currently supported by NIH/NIA awards R33 AG057353, R01 AG057733, and R01 AG056618. Dr. Meghani is currently supported by NIH/NINR award R01 NR017853 and NIH/NCI award R01 CA270483.
About Kristin Levoy, PhD, MSN, RN
In addition to her role as a research scientist in the IU Center for Aging Research at Regenstrief Institute, Dr. Levoy is an assistant professor at IU School of Nursing and a researcher at the IU Melvin and Bren Simon Comprehensive Cancer Center.
About Susan Hickman, Ph.D.
In addition to serving as interim president and CEO of the Regenstrief Institute and leading the IU Center for Aging Research at Regenstrief Institute, Susan Hickman, PhD, is a professor at Indiana University School of Nursing, a professor and Cornelius and Yvonne Pettinga Chair of Aging Research at IU School of Medicine, and the co-director of the IUPUI Research in Palliative and End-of-Life Communicating and Training (RESPECT) Signature Center.
About Regenstrief Institute
Founded in 1969 in Indianapolis, Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the globe.
Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.
About IU School of Nursing
Indiana University School of Nursing was established in 1914 with the opening of Long Hospital in Indianapolis, Indiana. The School unites into a core structure with three campus locations: Bloomington, Indianapolis (IUPUI), and Fort Wayne. Almost 23,000 alumni across the globe are leaders in clinical practice, research, education, and innovation. The Master’s and DNP programs were named to the 2023 U.S. News & World Report Best Graduate Nursing Schools and in 2023 U.S. News & World Report Best Online Programs ranked the Master’s #10 in the nation. The National League for Nursing has designated the School as a Center of Excellence in Nursing Education in two areas. Academic programs include three tracks in the undergraduate program, nine tracks in the master’s program, post-master’s options, a post-masters DNP, and a PhD. The School is known for a robust program of research focused on quality of life in chronic illness, nursing education, and cancer prevention and control.