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A research study led by Kristin Levoy, PhD, MSN, RN, from the Regenstrief Institute and Indiana University School of Nursing, analyzed the data of 33,541 cancer patients to investigate the relationship between advance care planning and end-of-life care. The study found that cancer patients who engaged in advance care planning tended to receive less aggressive and more comfort-focused end-of-life care, compared to those who did not engage in such planning.

Advance care planning involves a continuous process of preparing individuals for making decisions about their future care, with the aim of ensuring that they receive end-of-life care that aligns with their preferences. It is more than just filling out forms and is instead a dynamic process that involves ongoing communication about the individual's goals and values.

Dr. Levoy emphasized the importance of direct engagement of patients and caregivers in the communication components of advance care planning, which she and her team found to be a crucial aspect of improving end-of-life care for cancer patients. This suggests that simply providing forms for patients to fill out may not be sufficient, and that ongoing communication and involvement in the planning process are essential for ensuring that end-of-life care aligns with patient preferences.

Dr. Levoy's analogy of advance care planning being similar to car insurance emphasizes the importance of preparing for potential future events, such as end-of-life decision-making. By documenting their healthcare preferences, patients ensure that their care is consistent with their values and goals, even if they are unable to communicate their wishes themselves. The ultimate goal is to provide patient-centered care that aligns with their preferences and values.

Cancer is frequently identified as a prolonged and persistent ailment that allows for a reasonable level of activity initially, but later causes a sharp decline in abilities and an escalation of symptoms during the final six months of life. As a result, patients typically have the opportunity to plan ahead for end-of-life care through advance care planning, which can aid in making informed decisions.

According to Dr. Levoy, advance care planning is effective in this group of patients with cancer. He pointed out that their research showed a positive impact on the decisions made by patients and their caregivers, including a preference to avoid hospitalization and intensive care unit admissions and to complete do not resuscitate orders as they approach the end-of-life. These findings demonstrate the usefulness of advance care planning. By analyzing data from studies that involved tens of thousands of patients with cancer, we gain a better understanding of the benefits that advance care planning can offer to patients and caregivers throughout the course of the disease.

The data suggests that cancer patients who participated in advance care planning were 50 percent more inclined to fulfill do not resuscitate orders compared to those who did not engage in such planning.

The meta-analysis found advance care planning also was associated with significantly lower odds of various indicators of “aggressive” end-of-life:

  • chemotherapy
  • 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

The study authors highlight that end-of-life preferences vary significantly from person to person and are highly personalized. However, the evidence suggests that individuals with serious illnesses tend to prefer comfort-focused care and aim to avoid aggressive medical interventions.

Susan Hickman, PhD, a study co-author and an advance care planning expert, emphasized the significance of the meta-analysis, stating that it provides compelling evidence that advance care planning contributes to patients with cancer receiving care that aligns with their goals. Although there is a need to enhance the implementation of advance care planning, the findings validate the necessity of continued discussions about values, preferences, and objectives. These conversations are crucial in preparing patients and their caregivers for making informed decisions about end-of-life care.

The article titled "Don't Throw the Baby Out with the Bathwater: Meta-Analysis of Advance Care Planning and End-of-life Cancer" has been 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.

Funding
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. Â鶹´«Ã½ & World Report Best Graduate Nursing Schools and in 2023 U.S. Â鶹´«Ã½ & 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.