Literature Review

Applying natural language processing to electronic health record data—From text to triageJAMA Network Open; Grace K. Sun, BS; Andrew P. Ambrosy, MD; 11/24Most information about a patient’s clinical status, disease progression, and response to treatment lies in qualitative clinician documentation in the electronic health record (EHR). The New York Heart Association (NYHA) classification was developed to standardize functional status assessments and treatment decisions ... [but] ... due to inconsistent implementation in routine care, much of the critical information remains in unstructured EHR data that is difficult to capture and analyze. Natural language processing (NLP) is an emerging tool that uses artificial intelligence to process unstructured or semistructured free-text data, such as the embedded assessments of HF symptom status in clinician documentation. NLP, a field of artificial intelligence that focuses on understanding, interpreting, and generating human language, is capable of evaluating these data and providing large-scale insights into patient progress and treatment response, with some limitations. Overall, these findings suggest that deep learning approaches may be used to address meaningful gaps in clinician documentation.

Care of the patient nearing the end of life in the Neurointensive Care UnitNeurocritical Care; by Hanna Ramsburg, Abigail G Fischer, Meredith MacKenzie Greenle, Corey R Fehnel; 12/24Neurologically critically ill patients present with unique disease trajectories, prognostic uncertainties, and challenges to end-of-life (EOL) care. Acute brain injuries place these patients at risk for underrecognized symptoms and unmet EOL management needs, which can negatively affect their quality of care and lead to complicated grief in surviving loved ones. To care for patients nearing the EOL in the neurointensive care unit, health care clinicians must consider neuroanatomic localization, barriers to symptom assessment and management, unique aspects of the dying process, and EOL management needs. We aim to define current best practices, barriers, and future directions for EOL care of the neurologically critically ill patient.

Trends in hepatocellular carcinoma mortality rates in the US and projections through 2040JAMA Network Open; Sikai Qiu, MM; Jiangying Cai, MM; Zhanpeng Yang, MM; Xinyuan He, MD; Zixuan Xing, MD; Jian Zu, PhD; Enrui Xie, MD; Linda Henry, MD; Custis R. Chong, MD; Esther M. John, MD; Ramsey Cheung, MD; Fanpu Ji, MD, PhD; Mindie H. Nguyen, MD, MAS; 11/24Primary liver cancer imposes a substantial global disease burden, ranking as the sixth most commonly diagnosed cancer worldwide and the third-leading cause of global cancer-related mortality in 2020. In this cross-sectional study of 188,280 HCC [hepatocellular carcinoma]-related deaths, ASMRs [age-standardized mortality rates] increased from 2006 to 2022 and were projected to continue rising until 2040, primarily due to increased deaths from alcohol-associated liver disease (ALD) and metabolic dysfunction–associated steatotic liver disease (MASLD); deaths from viral hepatitis were under control and were projected to decrease. Large disparities were observed in HCC-related ASMRs by age, sex, and race and ethnicity. ...these findings may serve as a reference for public health decision-making and timely identification of groups at high risk of HCC-related death.

Patient, caregiver, and clinician perspectives on the time burdens of cancer careJAMA Network Open; Arjun Gupta, MD; Whitney V. Johnson, MD; Nicole L. Henderson, PhD; Obafemi O. Ogunleye, MEd; Preethiya Sekar, MD; Manju George, MVSc, PhD; Allison Breininger, MA; Michael Anne Kyle, PhD, RN; Christopher M. Booth, MD; Timothy P. Hanna, MD, PhD; Gabrielle B. Rocque, MD; Helen M. Parsons, PhD; Rachel I. Vogel, PhD; Anne H. Blaes, MD, MS; 11/24Cancer and its care impose significant time commitments on patients and care partners. These commitments, along with their associated burden, have recently been conceptualized as the “time toxicity” of cancer care. Patients with advanced solid tumors spend approximately 20% to 30% of their days alive with health care contact. In this qualitative analysis of patients, informal care partners, and clinicians, participants highlighted the diverse sources of time burdens, how these time burdens affected care partners alongside patients, and how the time burdens extended to the wider network around them. Time burdens had outcomes ranging from causing psychosocial distress, and “seemingly short” ambulatory appointments turning into all-day affairs. These findings will guide the oncology community to map, measure, and address time burdens for persons affected by cancer.

Palliative nursing in home health care across the lifespanAmerican Journal of Nursing; by Murali, Komal Patel; Ma, Chenjuan; Harrison, Krista L.; Hunt, Lauren J.; Rosa, William E.; Boyden, Jackelyn Y.; 12/24Primary palliative nursing in home health care (HHC) can be delivered to medically complex patients across the lifespan. Primary palliative nursing provides patient- and family-centered care for serious illness by alleviating the stress and symptoms of illness; coordinating care; and supporting the social, cultural, and psychological aspects of care. In this article, two case scenarios of patients in different phases of life serve as examples of primary palliative nursing in HHC. Key elements and challenges of delivering primary palliative nursing care in HHC are also highlighted.

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study Palliative Care and Social Practice; by Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger; 11/29/24 This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. ... The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items.

AI can’t worry about patients, and a clinical ethicist says that mattersJAMA; Yulin Hswen, ScD, MPH; Jennifer Abbasi; 11/24This conversation is part of a series of interviews in which JAMA Network editors and expert guests explore issues surrounding the rapidly evolving intersection of artificial intelligence (AI) and medicine. Today, Hull is an associate professor and serves as associate director of the biomedical ethics program at Yale, where her clinical practice focuses on echocardiography and cardiac care of patients with cancer. She spoke about ethical boundaries for using AI in the clinic in a recent conversation with Yulin Hswen, ScD, MPH, an associate editor at JAMA and the newly launched JAMA+ AI and an assistant professor of epidemiology and biostatistics at the University of California, San Francisco. Medicine is, they remind the reader, “as much art as science, as much a moral endeavor as a technical one.”

Analysis of mortality causes and locations in veterans with ALS: A decade reviewMedical Science Monitor; Meheroz H Rabadi, Kimberly A Russell, Chao Xu; 11/24Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that leads to rapid degeneration of nerves in the brain and spinal cord, with eventual loss of voluntary movements, including breathing. This retrospective study of medical record data from 105 US veterans diagnosed with ALS at the Oklahoma City VA Medical Center between 2010 and 2021 aimed to identify patient demographics, and the causes and places of death for these veterans. This study's findings are that in veterans with ALS, the main cause of death is respiratory disease (failure). The main location of death was the home, with their family members. The all-cause mortality rate among veterans with ALS was 26 times greater than for the general Oklahoma population.

Donor time to death and kidney transplant outcomes in the setting of a 3-hour minimum wait policyJAMA Network Open; Samuel J. Tingle, MBBS; Nicholas D. H. Chung, MBBS; Abdullah K. Malik, MBBS; Georgios Kourounis, MBBS; Emily Thompson, PhD; Emily K. Glover, MBBS; Jennifer Mehew, PhD; Jennifer Philip, MD; Dale Gardiner, MBBS; Gavin J. Pettigrew, PhD; Chris Callaghan, PhD; Neil S. Sheerin, PhD; Colin H. Wilson, PhD; 11/24Due to concerns regarding organ viability, most organ donation organizations internationally wait no longer than 1 to 2 hours for potential donation after circulatory death (DCD), possibly underutilizing an important organ source; UK policy mandates a minimum 3-hour wait time. In this cohort study of 7,183 DCD kidney transplant recipients, donor time to death was not associated with short-term or long-term kidney transplant outcomes. This study suggests that organ donation organizations can safely extend the minimum wait time to 3 hours to significantly increase the number of kidneys available for transplant internationally.

It gives you a really great feeling, knowing that what you are doing is making somebody's day: Provider perspectives on implementing the individualized positive psychosocial interactionPsychological Services; Cassandra Keiser, Molly Noble, Kimberly VanHaitsma, Katherine M Abbott; 11/24The Individualized Positive Psychosocial Interaction (IPPI) is an evidence-based program that supports engaging people living with dementia and their care partners in the nursing home (NH). IPPIs are brief, one-to-one, preference-based activities to improve well-being and decrease behavioral and psychological symptoms of dementia. Champions voiced that the IPPI program was cost-effective, adaptable to their local contexts, and provided training to staff to support residents experiencing distress. Overall, the IPPI program goals are aligned with nursing home organization goals, supporting staff in providing comfort to residents communicating distress, and can be feasibly implemented.

Always Politically Correct: Supporting Seriously Ill Older Populations and Their FamiliesJournal of Social Work in End-of-Life & Palliative Care; M. Courtney Hughes, Erin Vernon; 8/24We have been researching outcomes related to seriously ill individuals for over a decade, critically examining countless research articles from around the world, and extensively interviewing various stakeholders in this space, including hospital leaders, hospice leaders, lobbyists, nurses, social workers, and informal caregivers... In a world with so many dividing issues, increasing support for these vulnerable groups needing more attention should stand above the fray and become something that all leaders of any political party should support.Publisher's note: Thank you Courtney and Erin, well said.

Symptom screening for hospitalized pediatric patients with cancer-A randomized clinical trialJAMA Pediatrics; L. Lee Dupuis, RPh, PhD; Donna L. Johnston, MD; David Dix, MBChB; Sarah McKillop, MD, MSC; Sadie Cook, BA; Nicole Crellin-Parsons, BMSc; Ketan Kulkarni, MD; Serina Patel, MD; Magimairajan lssai Vanan, MD, MPH; Paul Gibson, MD; Dilip Soman, PhD; Susan Kuczynski, HBSc; George A. Tomlinson, PhD; Lillian Sung, MD, PhD; 11/24Pediatric cancer survival outcomes are excellent, but patients often require intensive therapies to achieve a cure. Pediatric patients with cancer experience severely bothersome symptoms during treatment. It was hypothesized that symptom screening and provision of symptom reports to the health care team would reduce symptom burden in pediatric patients with cancer. In this randomized clinical trial, among pediatric patients with cancer admitted to a hospital or seen in a clinic daily for at least 5 days, symptom screening with Symptom Screening in Pediatrics Tool (SSPedi) improved total symptom scores compared to usual care.

World Medical Association Declaration of Helsinki-Ethical principles for medical research involving human participantsJAMA; World Medical Association; 10/24Preamble: The World Medical Association (WMA) has developed the Declaration of Helsinki as a statement of ethical principles for medical research involving human participants, including research using identifiable human material or data. The Declaration is intended to be read as a whole, and each of its constituent paragraphs should be applied with consideration of all other relevant paragraphs. While the Declaration is adopted by physicians, the WMA holds that these principles should be upheld by all individuals, teams, and organizations involved in medical research, as these principles are fundamental to respect for and protection of all research participants, including both patients and healthy volunteers.