Engagement of Hispanic/Latino caregivers to inform outpatient dementia care approaches
American Journal of Hospice & Palliative Medicine; by Tais Moreira Protasio, Liliana Ramirez Gomez, Ilian Mino, Heily Chavez Granados, Laura C Hanson, Christine S Ritchie, Stacy M Fischer, Caroline Rivers, Molly Lynch, Hillary D Lum; 11/26
Alzheimer's Disease and Related Dementias (ADRD) disproportionately affect Americans who identify as Hispanic/Latino and their family caregivers. Existing dementia care approaches may have limited responsiveness to their cultural needs. In conclusion, through this community engagement process, we illustrated the importance of outpatient dementia care approaches that are linguistically accessible, culturally relevant, and attentive to input from Hispanic/Latino caregivers to address palliative care needs in the context of dementia.

Patient experiences of disrespectful or judgmental language in medical records
JAMA Network Open; by Natasha Steele, Amrapali Maitra, Zhiyong Dong, Deborah Wachenheim, Vishnu Nair, Alfredo Reyes-Guzman, Aditya Narayan, Erika Schillinger, Preetha Basaviah, Jason Hom, Sigall K. Bell; 10/26
The 21st Century Cures Act made clinical notes broadly accessible to patients. In this survey study, 1 in 6 US adults reported DJL [disrespectful or judgmental language] in medical records (or in health care experiences for nonportal users), disproportionately affecting those with low income or chronic pain, and DJL was associated with diminished clinician documentation trust. Patient-anticipated consequences such as diminished intent to return to clinician suggest important quality of care and system-level implications. Realizing the promise of health information transparency will require concurrent reform in respectful language in clinical documentation and health care encounters.
Assistant Editor's note: I was shocked and saddened to read this study about so many people that have felt disrespected by health care professionals. This serves as a strong reminder that we must be careful to remain objective and non-judgmental when serving patients and documenting in their medical records. And we can look at these findings in another way as well. If I am a patient, and act disrespectfully to a health care worker, it could cause that health care worker to want to retaliate, and to write nasty statements in my medical record!

Using hospital mortality data to inform creation of an acute care Inpatient GIP Hospice program led by an academic palliative care team
Journal of Palliative Medicine; by John Liantonio, Zachary Klock, Katie Mechler, Gillian Love, Margaret Kreher; 10/26
Acute Care General Inpatient (GIP) Hospice within hospital systems is becoming more common nationally. Palliative care teams are often involved in programmatic planning. A retrospective chart review [showed that] the majority (79%) of patients died on comfort care, with 61% dying within minutes to hours of decision to transition to comfort care, often associated with terminal extubation, while 39% of patients lived greater than 12 hours with an average time from comfort care to death of 72 hours. Palliative care was consulted on 46% of patients prior to death. Hospice was consulted on 17% of all mortalities. Understanding patient volumes and demographics is essential for operational planning and to ensure high-quality care can be delivered.

Using community-engaged approach to develop culturally informed study materials in palliative care
Journal of Pain & Symptom Management; by Jyotsana Parajuli, Zhuo Job Chen, Regine M. Smith, Savannah Norris, Liliana M. Hernandez, Sarah Rutledge, Grant Williams, Marie A. Bakitas; 10/26
Cultural values and beliefs of individuals may affect their healthcare decision-making including their preferences and readiness for palliative care – especially among under-represented populations. Community-engaged research approaches can help investigators to better understand older adults with cancer and their family caregivers’ cultural preferences regarding their palliative care needs and readiness for palliative care services. Using a community-engaged approach, we formed and worked with a racially/ethnically diverse advisory board of older adults with cancer and their family caregivers to develop culturally informed recruitment flyers and the semi-structured interview guides for a palliative care readiness (PALCARE) tool development and validation study. Partnering with community members helped ensure that the PALCARE tool development/validation study materials were culturally responsive for the target population.

Early palliative debriefing to mitigate grief and burnout in hematology/oncology fellows: A pilot study
Journal of Palliative Medicine; by Cameron Oswalt, Richard F Riedel, Andrea Sitlinger, Anthony Galanos; 11/26
Oncology providers are regularly exposed to grief, contributing to rising rates of burnout in practicing oncologists and trainees. Improved supportive interventions to combat grief are necessary. This pilot study aimed to evaluate how debriefing sessions led by a palliative care physician helped fellows cope with burnout and grief. Thirty-eight respondents (88.4%) reported that debriefing sessions provided time and space to discuss grief, with 79.1% indicating benefit after the first session. All respondents reported the desire for debriefing sessions to continue.These findings suggest the importance of adopting similar palliative care-led practices throughout fellowship training programs and at other levels.

Enhancing culturally sensitive care for critically ill Native American patients and families: An educational initiative and resource guide for nursing and medical teams
American Journal of Hospice & Palliative Medicine; by Rachel M. Wiste, Valerie DeCora Guimaraes, Cole L. Nevel, Teresa Goddard, Caila Rinker, Lindsey Randall, Callina Johnmeyer, Mei-Ean Yeow; 10/26
Native American (NA) patients experience persistent inequities in advance care planning (ACP) and often present to tertiary centers with critical illness ... we created (1) an “Honoring Your Choices” (HYC) communication card with culturally sensitive prompts for serious illness conversations and (2) a quick reference guide (QRG) outlining key cultural considerations and unit-specific resources. Prior to the session, >80% of respondents reported being not or only slightly confident discussing end-of-life issues with NA patients/families; post-session surveys demonstrated increased self-reported confidence in recognizing when cultural beliefs may influence care and in conducting end-of-life discussions. This initiative demonstrates how culturally congruent approaches to serious illness conversations may support more meaningful engagement with NA patients and families.

Engaging community advisors to adapt remote Me & My Wishes: Perspectives from persons living with dementia, care partners, and nursing home leaders
Geriatric Nursing; by Shinduk Lee, Hyosin Kim, Roxanne Geurin, Linda S. Edelman, Gail L. Towsley; 10/26
Me & My Wishes, is a video recording approach for documenting, viewing, listening, and discussing nursing home (NH) residents’ preferences for daily and end-of-life care. While challenges exist in facilitating GOC [goals of care] conversations, the use of structured communication protocols and remote technologies, such as remote Me & My Wishes, may overcome these barriers. ... virtual GOC discussions continue to offer meaningful opportunities to increase engagement among individuals experiencing time constraints and geographic barriers. The current study offers important insights for optimizing remote delivery of these vital conversations. Leveraging remote care conferences may better engage participants and foster meaningful discussions about end-of-life preferences.

Trends in location of death for individuals with primary ocular cancer in the United States
Ophthalmic Epidemiology; by Rochan Ramesh, Rohit Mantena, Urvish Jain, Bhav Jain, Anthony Rios, Edward Christopher Dee, Geoffrey Tabin; 10/26
In our analysis, patients who died of OC revealed significant disparities for the place of death based on age and race. Compared to deaths from all causes, patients with OC [ocular cancer] die nearly twice as often at home and far less often in nursing facilities. In contrast to other cancer sites, older patients with OC were more likely to die at their preferred location of home (54.6%). For example, a study using the National Lung Cancer Audit found that only 29% of lung cancer decedents died at home. Other literature using data from CDC WONDER has shown that 44% of bone cancer decedents and 40% of lung and brain cancer decedents also died at home. Moreover, our findings suggest that older patients have lower rates of dying in hospitals, compared to younger individuals.

The role of specialty pediatric palliative care in pulmonary hypertension: A case series
Journal of Palliative Medicine; by Sandra Aziz, Joshua Roy, Elise Whalen, Nidhy Paulose Varghese, Jill Ann Jarrell; 10/26
Comprehensive care of pediatric Pulmonary Hypertension (PH) patients may include multiple subspecialty and supportive services, including specialized pediatric palliative care (PPC). PPC is interdisciplinary, patient- and family-centered care that supports the physical, emotional, and spiritual well-being of children with serious illnesses to promote quality of life. We present a case series of three patients that highlight several of the unique approaches used by specialized PPC in pain and symptom management, assessing patient and caregiver coping, advance care planning, care coordination, complex medical decision-making, end-of-life care, and grief and bereavement support. Our aim is to define the role of PPC in the longitudinal care of PH patients and to initiate discussions on best practices and optimal outcomes in this population.

[Brazil] Laboratory testing at the end of life in patients with cancer: A systematic review of utilization, costs, clinical utility, and patient burden
Journal of Hospice & Palliative Medicine; by Michele Renata Zimolo Varasquim, Alberto Cardoso Martins Lima; 10/26
Laboratory tests can identify reversible causes of distress near the end of life, but how often they are ordered does not by itself show whether they improve care. Associations with palliative care services varied by model and setting, whereas timely advance care planning was more consistently associated with lower utilization. Hospice and palliative models often reported lower laboratory use or costs. Few studies linked test results to management changes, symptom benefit, or patient experience. Conclusions: Laboratory testing is common near the end of life in cancer, but evidence is stronger for patterns of use and cost than for patient benefit. Testing decisions should be guided by a clear clinical question, a plausible effect on management, and the patient’s goals of care.

[Netherlands] Expert agreement on palliative reasoning and monitoring in heart failure: International Delphi study
Journal of Pain & Symptom Management; by Jeanine C.B. De Leeuw, Yvonne M.J. Goërtz, Roman Rolke, Cosimo Chelazzi, Sigita Glaveckaite, Donata Kurpas, Dorota Stefanicka-Wojtas, Cristina Monforte-Royo, Pier Jaarsma, Catarina Letras, Amitava Banerjee, Carlo Leget, Geert-Jan Geersing, Everlien de Graaf, Hans-Peter Brunner-La Rocca, Daisy J.A. Janssen, on behalf of the RAPHAEL consortium
Palliative reasoning aims to support the integration of palliative care (PC) into heart failure (HF) management and includes multidimensional monitoring of symptoms, wishes, and needs. This Delphi study established expert agreement on the steps of palliative reasoning and the content of a multidimensional monitoring instrument. These findings provide a shared foundation for earlier, more person-centered and coordinated PC, while allowing national adaptations.

Happiness is when what you think, what you say, and what you do are in harmony. ~Mahatma Gandhi