Addressing Social Norms Influencing Receipt of Aggressive End-of-Life Care

CancerNetwork® spoke with Megan Mullins, PhD, MPH, assistant professor in the Peter O’Donnell Jr. School of Public Health, the Harold C. Simmons Comprehensive Cancer Center, and the Department of Internal Medicine at UT Southwestern Medical Center, about developments in end-of-life care for patients with advanced cancers that she believes has the potential to transform clinical practice.

Mullins expressed that an opportunity to improve end-of-life care can be generalized beyond implantable cardioverter defibrillator (ICD) use, explaining that it may employ measures that do not extend survival or improve a patient’s quality of life. She further iterated that patients often seek to convey to their relatives that they are not giving up, which results in them accepting more aggressive care, even if they would otherwise not want to receive it.

Furthermore, Mullins explained that individuals may be prone to making irrational decisions in the end-of-life care space. She further expressed that anxiety and cultural norms surrounding death and dying should be addressed to more meaningfully reduce the receipt of needlessly aggressive or low-value care for patients with terminal cancers nearing the end of their life.

Results from a retrospective analysis study published in Cancer showed that 45% of patients undergoing end-of-life care for advanced cancers with ICDs had ICD-related programming or interrogation visits, with another 26% appearing for ICD-related monitoring visits.¹ Mullins, in a news release, expressed that these visits could serve as an opportunity to discuss goals of care and device deactivation.²

The study identified 37,306 decedents with stage III or IV cancer at diagnosis, of whom 2117 (6%) had an ICD device. Furthermore, of patients with advanced cancers with an ICD, 1323 (63%) had the device prior to cancer diagnosis, and the median time from first ICD claim to death was 35.7 months (IQR, 17.5-59.2).

Transcript:

One of the biggest opportunities we have to improve end-of-life care is not necessarily specific to ICDs, but it is taking into account the fact that there is a significant amount of care delivered to people with cancer near the end of life that clinicians know is not going to extend their survival or improve their quality of life. We have social norms [such as] not wanting patients to feel abandoned. Even patients have described not wanting their relatives to think that they are giving up, so they will accept care that they do not really want. In order for us to make a meaningful dent in the receipt of low-value or aggressive end-of-life care, we have to better account for the fact that people do not act rationally in the end-of-life care space, and we have to address anxiety and cultural norms around death and dying in the United States.

References

1. Mullins MA, Wang T, Shahan K, et al. Implantable cardioverter defibrillators in people dying with cancer: A SEER-Medicare analysis of ICD prevalence and association with aggressive end-of-life care. Cancer. 2024;131(1):e35640. doi:10.1002/cncr.35640
2. End-of-life care more aggressive for cancer patients with defibrillators. News release. UT Southwestern Medical Center. January 8, 2025. Accessed January 10, 2025. https://tinyurl.com/55m4smtu