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Family Communication About End-of-Life Decisions
(2025-04) Myers, Anne Louise; Goering, Elizabeth M.; Bute, Jennifer J.; Parrish-Sprowl, John; Schwartz, Peter H.
Purpose:
For adults with serious illness nearing the end of life there are difficult decisions to be made about medical care and treatment. However, persons with life-threatening illness are commonly incapacitated, leaving the responsibility for making critical end-of-life decisions to family. To date, research on end-of-life decision-making and communication has framed proxy decision-making as a role for a “key” individual, despite growing evidence that multiple relatives often make decisions together. Also, although the literature examines communication between clinicians and patients or surrogates there is little research focused on family communication and how it relates to end-of-life decisions. The objective of the current study is to move towards bridging these gaps by examining within-family communication and decision-making from the perspectives of the family members themselves.
Methods:
This qualitative study explored family communication about end-of-life decisions through in-depth family interviews (n = 22). I applied Relational Dialectics Theory 2.0, a framework used for understanding relational communication within a particular context. To examine text derived from interviews, I used contrapuntal analysis, a type of discourse analysis that facilitates identification of competing discourses.
Results:
Three competing sets of discourses were predominant: 1) families providing care versus families relinquishing care, 2) independent versus interdependent decision-making, and 3) the certainty of knowing the patient’s wishes versus the uncertainty of knowing how to honor those wishes.
Conclusions:
The results highlight three key aspects of family decision-making. First, because families perceived caring for a loved one at home as normative, relinquishing end-of-life care to hospice or long-term care was a significant source of emotional burden. Second, families engaged in collaborative decision-making rather than having a primary decision-maker acting independently. Third, even when a patient’s wishes were known to the family, decision-makers still struggled with the uncertainty of understanding how to apply those preferences to medical decisions.
Implications:
This study provides insight into the communicative needs of family decision-makers that can be used to refine communication interventions and improve end-of-life experiences for families. These findings also suggest that more support is needed from clinicians to guide decision-makers with in-the-moment decision-making.
2025 Communities of Color Index Infographic
(2025-05-20) Indiana University Lilly Family School of Philanthropy
Spooks, Saviors, and Saltwater: Counter-Narratives of Black Male Math Teachers
(2025-04) Taylor, Evan Marquise; Morton, Crystal; Hayes, Cleveland; Kazembe, Lasana; Nguyễn, Thu Sương Thị; Sumpter, Daniella Ann Cook
This phenomenological study explored the lived experiences of four Black male mathematics teachers in large U.S. urban areas, applying Critical Race Theory to examine the impact of education policies on their professional and political identities. The study aimed to contribute to the collection of narratives on the experiences of Black mathematics teachers, particularly Black men. To foreground these experiences, participant interview data is presented as a stage play in the form of instructive vignettes, centering the experiences, knowledge, and identity formation of Black male math teachers. By examining these intersecting identities across contexts, this study offers insights for policymakers and researchers to use in crafting supportive policies and practices that foster political identity development among Black men in the profession of teaching mathematics. Through interviews, the author explores participants’ relationships with mathematics, their responses to anti-Blackness in mathematics assessments, and the development of their professional identities, with each vignette serving as a counter-narrative for analysis and interpretation.
The Pharmacogenomics Global Research Network Implementation Working Group: global collaboration to advance pharmacogenetic implementation
(Wolters Kluwer, 2025) Cavallari, Larisa H.; Hicks, J. Kevin; Patel, Jai N.; Elchynski, Amanda L.; Smith, D. Max; Bargal, Salma A.; Fleck, Ashley; Aquilante, Christina L.; Killam, Shayna R.; Lemke, Lauren; Ochi, Taichi; Ramsey, Laura B.; Haidar, Cyrine E.; Ho, Teresa; El Rouby, Nihal; Monte, Andrew A.; Allen, Josiah D.; Beitelshees, Amber L.; Bishop, Jeffrey R.; Bousman, Chad; Campbell, Ronald; Cicali, Emily J.; Cook, Kelsey J.; Duong, Benjamin; Tsermpini, Evangelia Eirini; Girdwood, Sonya Tang; Gregornik, David B.; Grimsrud, Kristin N.; Lamb, Nathan; Lee, James C.; Lopez, Rocio Ortiz; Mazhindu, Tinashe Adrian; Morris, Sarah A.; Nagy, Mohamed; Nguyen, Jenny; Pasternak, Amy L.; Petry, Natasha; van Schaik, Ron H. N.; Schultz, April; Skaar, Todd C.; Al Alshaykh, Hana; Stevenson, James M.; Stone, Rachael M.; Tran, Nam K.; Tuteja, Sony; Woodahl, Erica L.; Yuan, Li-Chi; Lee, Craig R.; Medicine, School of Medicine
Pharmacogenetics promises to optimize treatment-related outcomes by informing optimal drug selection and dosing based on an individual's genotype in conjunction with other important clinical factors. Despite significant evidence of genetic associations with drug response, pharmacogenetic testing has not been widely implemented into clinical practice. Among the barriers to broad implementation are limited guidance for how to successfully integrate testing into clinical workflows and limited data on outcomes with pharmacogenetic implementation in clinical practice. The Pharmacogenomics Global Research Network Implementation Working Group seeks to engage institutions globally that have implemented pharmacogenetic testing into clinical practice or are in the process or planning stages of implementing testing to collectively disseminate data on implementation strategies, metrics, and health-related outcomes with the use of genotype-guided drug therapy to ultimately help advance pharmacogenetic implementation. This paper describes the goals, structure, and initial projects of the group in addition to implementation priorities across sites and future collaborative opportunities.
In vivo validation of the palmitoylation cycle as a therapeutic target in NRAS-mutant cancer
(bioRxiv, 2025-03-21) Decker, Matthew; Huang, Benjamin J.; Ware, Timothy; Boone, Christopher; Tang, Michelle; Ybarra, Julia; Ballapuram, Aishwarya C.; Taran, Katrine A.; Chen, Pan-Yu; Amendáriz, Marcos; Leung, Camille J.; Harris, Max; Tjoa, Karensa; Hongo, Henry; Abelson, Sydney; Rivera, Jose; Ngo, Nhi; Herbst, Dylan M.; Suciu, Radu M.; Guijas, Carlos; Sedighi, Kimia; Andalis, Taylor; Roche, Elysia; Xie, Boer; Liu, Yunlong; Smith, Catherine C.; Stieglitz, Elliot; Niphakis, Micah J.; Cravatt, Benjamin F.; Shannon, Kevin; Medical and Molecular Genetics, School of Medicine
Normal and oncogenic Ras proteins are functionally dependent on one or more lipid modifications 1,2. Whereas K-Ras4b farnesylation is sufficient for stable association with the plasma membrane, farnesylated H-Ras, K-Ras4a, and N-Ras traffic to the Golgi where they must undergo palmitoylation before regulated translocation to cell membranes. N-Ras palmitoylation by the DHHC family of palmitoyl acyl transferases (PATs) and depalmitoylation by ABHD17 serine hydrolases is a dynamic process that is essential for the growth of acute myeloid leukemias (AMLs) harboring oncogenic NRAS mutations3-6. Here, we have tested whether co-targeting ABHD17 enzymes and Ras signal output would cooperatively inhibit the proliferation and survival of NRAS-mutant AMLs while sparing normal tissues that retain K-Ras4b function. We show that ABD778, a potent and selective ABHD17 inhibitor with in vivo activity, selectively reduces the growth of NRAS-mutant AML cells in vitro and is synergistic with the allosteric MEK inhibitor PD0325901 (PD901)7,8. Similarly, ABD778 and PD901 significantly extended the survival of recipient mice transplanted with three independent primary mouse AMLs harboring an oncogenic Nras G12D driver mutation. Resistant leukemias that emerged during continuous drug treatment acquired by-pass mutations that confer adaptive drug resistance and increase mitogen activated protein kinase (MAPK) signal output. ABD778 augmented the anti-leukemia activity of the pan-PI3 kinase inhibitor pictilisib9, the K/N-RasG12C inhibitor sotorasib10, and the FLT3 inhibitor gilteritinib11. Co-treatment with ABD778 and gilteritinib restored drug sensitivity in a patient-derived xenograft model of adaptive resistance to FLT3 inhibition. These data validate the palmitoylation cycle as a promising therapeutic target in AML and support exploring it in other NRAS-mutant cancers.