ArticleThe Gerontologist2018
"End-of-Life Care? I'm not Going to Worry About That Yet." Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients.
Article in The Gerontologist, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
38 citing papers in PubMed, 4 syntheses or guidelines pooled it, 86 citations in OpenAlex.
- Associations of health literacy with self-management behaviours and health outcomes in chronic kidney disease: a systematic review.Journal of nephrology · 2023Pooled it
- Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.Palliative medicine · 2023Pooled it
- Patient Perspectives to Inform a Health Literacy Educational Program: A Systematic Review and Thematic Synthesis of Qualitative Studies.International journal of environmental research and public health · 2019Pooled it
- Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies.BMJ open · 2018Pooled it
- Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial.American journal of nephrology · 2020Trial
- The Effect of Health Literacy on a Brief Intervention to Improve Advance Directive Completion: A Randomized Controlled Study.Journal of primary care & community healthTrial
- Hemodiafiltration beyond the CONVINCE trial.Clinical kidney journal · 2026Review
- Guided Goals of Care Conversations Reveal Evolving, Personalized Priorities.Journal of pain and symptom management · 2026Article
- Decisional Conflict and Patient Experiences in Dialysis Treatment Decision-Making: A Mixed-Methods Study in a Portuguese Cohort.Healthcare (Basel, Switzerland) · 2026Article
- Exploring the Relationship Between Palliative Care Knowledge, Health Concerns, and Education Among Seriously Ill Older Adults and Their Family Caregivers Using Survey and Interview Data: A Novel Approach.The American journal of hospice & palliative care · 2026Article
- Depression and Advance Care Planning Among Japanese Patients Undergoing Hemodialysis: Japanese Dialysis Outcomes and Practice Pattern Study (J-DOPPS).Kidney medicine · 2026Article
- Tree of peaches: exploring what matters most at the end-of-life among healthy older adults in Taiwan: a qualitative study.BMC palliative care · 2026Article
- Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach.Palliative care and social practice · 2026Article
- In search of common ground - nephrologists' experiences in preparing and informing patients on the path to end-stage kidney disease.BMC nephrology · 2025Article
- Learning from experience: does providing end-of-life care support for relatives boost personal end-of-life health literacy?BMC palliative care · 2025Article
- End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland.BMJ public health · 2024Article
- Participation in Advance Care Planning Among Medically At-Risk Rural Veterans: Protocol for a Personalized Engagement Model.JMIR research protocols · 2024Article
- Advance care planning for patients with end-stage kidney disease on dialysis: narrative review of the current evidence, and future considerations.Journal of nephrology · 2024Review
- Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease.BMC nephrology · 2024Article
- Perceived Life Expectancy Among Dialysis Recipients: A Scoping Review.Kidney medicine · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
Purpose: Between 2000 and 2012, the incident dialysis population in the United States increased by nearly 60%, most sharply among adults 75 years and older. End-of-life (EOL) conversations among dialysis patients are associated with better patient-centered outcomes and lower use of aggressive interventions in the last month of life. This study examined how health literacy may affect engagement, comprehension, and satisfaction with EOL conversations among elderly dialysis patients. Design and Methods: Qualitative/descriptive study with semi-structured interviews about health literacy, EOL conversations, and goals of care with 31 elderly dialysis patients at 2 centers in Boston. Themes were interpreted in the context of Nutbeam's health literacy framework. Results: Despite high mortality risk in this population, only 13% of patients had discussed EOL preferences with physicians, half had discussed EOL with their social network, and 25% of participants explicitly stated that they had never considered EOL preferences. Less than 30% of participants could correctly define terminology commonly used in EOL conversations. Analyses yielded 5 themes: (1) Misunderstanding EOL terminology; (2) Nephrologists reluctant to discuss EOL; (3) Patients conforming to socially constructed roles; (4) Discordant expectations and dialysis experiences; and (5) Reconciling EOL values and future care. Patients had limited understanding of EOL terminology, lacked of opportunities for meaningful EOL discussion with providers and family, resulting in uncertainty about future care. Implications: Limited health literacy presents a substantial barrier to communication and could lead to older adults committing to an intensive pattern of care without adequate information. Clinicians should consider health literacy when discussing dialysis initiation.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.