Autonomy in decision making for end-of-life care is an essential step to ensure that patients with advanced cancer have their wishes heard, understood, and acted upon. Patients who don’t have these important conversations—either with loved ones or their treatment teams—can receive care that is not concordant with their values or wishes and may therefore experience poorer quality of life in their final days. Unfortunately, in many cases, these conversations do not occur. “Advance care planning is critical for patients with advanced cancer, as many of them have poor prognoses and may have shorter life expectancies. Planning for preferred end-of-life care ensures that patients receive care that is consistent with their preferences (e.g., goal concordant care), yet less than 50% of patients with advanced cancer engage in advance care planning,” explained Dr. Megan Shen, an Associate Professor in Fred Hutch’s Clinical Research Division. Additionally, significant disparities exist in advance care planning. “For patients who identify as Hispanic/Latino, these rates are even lower, putting Hispanic/Latino patients with advanced cancer at a higher risk of not receiving goal-concordant treatment at the end of life,” Dr. Shen continued. Recognizing the urgent need to address this disparity, Dr. Shen, research group members Claudia De Los Santos and Sarah Yarborough, and colleagues at collaborating institutions undertook a study that sought to develop a communication strategy or intervention aimed at improving advance care planning for Hispanic and Latino patients with advanced cancer.
Their study, recently published in Cancers, outlines a resource booklet termed PLAN—Planning Your Advance Care Needs–to aid in facilitating end-of-life conversations. To ensure PLAN met the needs of Hispanic and Latino communities, the authors sought to generate culturally appropriate content that respected the beliefs and values of the patients for whom this resource was intended. To achieve this goal, they incorporated two frameworks: 1.) communication competence—communicating in a manner that focuses on cultural and social context aimed at reducing racial and ethnicity-based disparities in healthcare, and 2.) sociocultural theory—a framework for including social relationships and cultural beliefs in advance care planning. The combined effort aimed “to develop an intervention that was specifically tailored to meet the needs and communication preferences of Hispanic/Latino patients with advanced cancer to coach them in how to plan for and communicate their end-of-life care wishes to family members, loved ones, and their treatment team,” described Dr. Shen.
After developing the intervention booklet, the authors engaged a group of Latino and Hispanic patients with advanced cancer, their caregivers, and experts (clinicians and researchers who work directly with this population) to gather their insight and feedback on whether this type of communication intervention met their needs. Overall, those who reviewed the content felt it was helpful, easy to understand, and stated their preference for a paper booklet (rather than an online version) in addition to reviewing the PLAN content with another person. They suggested providing more Hispanic and Latino stories and examples in the communication content to help ensure Hispanic and Latino beliefs and values were adequately incorporated.
The patients, caregivers, and experts described how having a script to have conversations around advance care planning was a helpful tool, as was having clear descriptions of what advance care planning is and what the different options available to patients are. They also noted that the language used in the booklets needed to be more direct and less technical. Importantly, the authors then amended the booklet according to the feedback they received to create a final version of PLAN.
Going forward, Dr Shen noted that “these findings raise the question as to whether this intervention will be effective at improving patients’ engagement in advance care planning, ultimately improving end-of-life care outcomes and reducing disparities among Hispanic/Latino patients.” To this end, Shen and colleagues are currently conducting a pilot study “to examine the potential efficacy of PLAN in improving engagement in advance care planning among Hispanic/Latino patients with advanced cancers.”
Dr Shen concluded by emphasizing the importance of meeting the needs of this patient population. “Hispanic/Latino patients are one of the fastest growing patient populations most at risk of suffering disparities in advance care planning completion and end-of-life care outcomes, yet few interventions are tailored to meet their unique needs. This [the present study] is a first step towards meeting this urgent need,” she said.
This work was funded by the National Cancer Institute, the National Center for Advancing Translational Sciences, and the National Institute on Minority Health and Health Disparities.
Fred Hutch/University of Washington/Seattle Children's Cancer Consortium member Dr. Megan Shen contributed to this work.
Shen MJ, Cho S, De Los Santos C, Yarborough S, Maciejewski PK, Prigerson HG. 2023. Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer. Cancers (Basel).15(14):3623. doi: 10.3390/cancers15143623. PMID: 37509284; PMCID: PMC10377387.