Literature Review

Contextualizing attitudes toward medical aid in dying in a national sample of interdisciplinary US hospice clinicians: hospice philosophy of care, patient-centered care, and professional exposurePalliative Care and Social Practice; Todd D Becker, John G Cagle, Cindy L Cain, Joan K Davitt, Nancy Kusmaul, Paul Sacco; 12/24Findings suggest that contextual factors-namely, the environments in which hospice clinicians practice-may shape attitudes toward MAID [medical aid in dying]. Unanticipated results indicating that hospice professionals' adherence to hospice values was not significantly associated with attitudes toward MAID underscore the need for further research on these complex associations, given previous theoretical and empirical support.

How innovative designs can help ease ethical tension in good dementia caregiving and decision-makingAMA Journal of Ethics; Emily Roberts, PhD; 12/24The European dementia village is a pioneering health care site: 4 acres of integrated housing and amenities that include large exterior walkways around gardens, restaurants, and shops. A US-based conceptual model is the dementia friendly city center [DFCC], which integrates health care service delivery into adaptive reuse and urban revitalization. Separately and together, we can work to deliver new interventions that can make a difference for those living with dementia and their families. Further exploration of the DFCC model is required to address possible financial and regulatory constraints that accompany the development of necessary public health infrastructure.

Our unrealized imperative: Integrating mental health care into hospice and palliative careJournal of Palliative Medicine; Susan Block; 12/24The field of Hospice and Palliative Medicine (HPM) has its roots in the principles, promulgated by Dame Cicely Saunders, that patient and family are the unit of care and that comprehensive integration of physical, psychological, social, and spiritual care is necessary to address suffering in all its dimensions. Although we aspire to provide comprehensive care for our patients, most hospice and palliative care (HPM) physicians lack basic competencies for identifying and managing patients with psychological distress and mental health distress and disorders, a growing segment of our clinical population. I propose strategies to address these challenges focused on enhancing integration between psychiatry/psychology and HPM, changes in fellowship education and faculty development, addressing the stigma against people with mental health diagnoses, and addressing system and cultural challenges that limit our ability to provide the kind of comprehensive, integrative care that our field aspires to.

Caring for emotional and spiritual needs of ICU families Medical Xpress; by Regenstrief Institute; 12/10/24 Family members of intensive care unit (ICU) patients often experience psychological and spiritual distress as they deal with serious illness and potential death. A new paper authored by a national team of experts at the intersection of health and spirituality highlights the critical role of the spiritual care provided by chaplains in supporting family members of ICU patients. ... "Our model describes three important ways that chaplain care supports ICU family members and helps them when faced with difficult decisions," said study co-author and chaplain-researcher George Fitchett, DMin, Ph.D., professor of religion, health and human values at Rush University Medical Center. "Chaplains provide family members with spiritual and emotional support. They also facilitate conversation with the medical team and help family members process the information from those conversations. Significantly, our study highlights the care provided by chaplains to ICU patient families and its impact on important outcomes." Editor's note: Click here for Improving Outcomes for for ICU Family Members: The Role of Spiritual Care, published in the Journal of Palliative Medicine, Oct 2024.

[China] Psychological resilience and frailty progression in older adultsJAMA Network Open; Bo Ye, PhD; Yunxia Li, MPH; Zhijun Bao, PhD; Junling Gao, PhD; 11/24In this cohort study of community-dwelling older adults, a longitudinal association between PR [psychological frailty] and frailty progression was found. The results suggest that monitoring changes in PR can help forecast future frailty trajectories, particularly highlighting the need to support individuals facing declines in resilience. Targeted interventions that prioritize enhancing PR have potential to prevent and ameliorate frailty.

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.”

Resuscitation attempt and outcomes in patients with asystole out-of-hospital cardiac arrestJAMA Network Open; Junki Ishii, Mitsuaki Nishikimi, Kazuya Kikutani, Shingo Ohki, Kohei Ota, Tatsuhiko Anzai, Kunihiko Takahashi, Masashi Okubo, Shinichiro Ohshimo, Taku Iwami, Nobuaki Shime; 11/24This cohort study analyzed data from a nationwide prospective OHCA [out-of-hospital cardiac arrest] registry in Japan ... presenting with asystole, ... the proportion with a favorable neurological outcome at 30 days was substantially low, and no prehospital ALS [advanced life support] procedure was associated with a favorable neurological outcome. These findings suggest that discussions regarding implementation of a termination of resuscitation rule for such patients are warranted.