Literature Review

Key national organizations for community crisis preparation, relief, and recoveryList compiled for end-of-life care organizations and the public by Composing Life Out of Loss; 2022.American Red Cross Disaster and Emergency Preparedness and ReliefAmerican Trauma SocietyFEMA – Federal Emergency Management AgencyInternational Critical Incident Stress FoundationNational Association of State EMS OfficialsNational Emergency Management AssociationNational Voluntary Organizations Active in DisasterU.S. Department of Health & Human Services – The Medical Reserves CorpsU.S. Department of Health & Human Services – Trauma and Critical Care TeamsU.S. Department of Justice – Office for Victims of CrimeWorld Central KitchenWorld Health OrganizationEditor's note: Disclosure, Composing Life Out of Loss is a newsletter sponsor.

BREAKING NEWS 10/1/2024, 12:30pm - Medicare Program; FY 2025 Hospice Wage Index and Payment Rate Update, Hospice Conditions of Participation Updates, and Hospice Quality Reporting Program Requirements; Correction Federal Register - The Daily Journal of the United States Government; Centers for Medicare & Medicaid Services  (CMS), Department of Health and Human Services (HHS); 10/1/24 This document corrects technical and typographical errors in the final rule that appeared in the August 6, 2024 Federal Register titled “Medicare Program; FY 2025 Hospice Wage Index and Payment Rate Update, Hospice Conditions of Participation Updates, and Hospice Quality Reporting Program Requirements”.I. Background: In FR Doc. 2024-16910 of August 6, 2024 (89 FR 64202), there were a number of technical and typographical errors that are identified and corrected in this correcting document. The provisions in this correction document are effective as if they had been included in the final rule that appeared in the August 6, 2024 Federal Register . Accordingly, the corrections are effective October 1, 2024.II. Summary of Errors: ...Given these errors, we are republishing the FY 2025 Hospice Wage Index file accordingly on the CMS website at: https://www.cms.gov/​medicare/​payment/​fee-for-service-providers/​hospice/​hospice-wage-index effective October 1, 2024.

Alzheimer dementia among individuals with down syndromeJAMA Network Open; Eric Rubenstein, PhD; Salina Tewolde, ScM; Amy Michals, MPH; Jennifer Weuve, ScD; Juan Fortea, MD; Matthew P. Fox, ScD; Marcia Pescador Jimenez, PhD; Ashley Scott, MPH; Yorghos Tripodis, PhD; Brian G. Skotko, MD; 9/24In this cohort study of  ... adults with Down syndrome enrolled in Medicaid or Medicare between 2011 to 2019, 23.3% of adults had Alzheimer dementia diagnoses, and the mean age of death was 59.2 years. These findings suggest that Alzheimer dementia ... occurs at high rates ... among people with Down syndrome, and administrative claims data may offer valuable insights into improving care for this diverse population.

The death toll rises as rescue crews respond to Hurricane Helene's devastation NPR Network; by Emma Bowman; 9/29/24, 4:35pm As rescue teams continued to respond in the wake of Hurricane Helene’s destruction in the Southeast U.S. and southern Appalachia on Sunday, the death toll continued to climb. Hundreds remained missing across the region. At least 64 people were killed across Florida, Georgia, North Carolina, South Carolina and Virginia, The Associated Press reported. Many people drowned after not heeding evacuation orders; others were killed in their homes and cars by falling trees and road signs. At least two Georgians were killed when a tornado picked up their car. Large portions of the region remained in darkness with power still knocked out to more than 2 million customers in five states on Sunday evening, nearly three days after Helene made landfall in Florida’s Big Bend region.An important note from our Publisher and Editor: Click here for a real-time map of multi-state power outages spread across FL, GA, SC, NC, and VA, linked from the Asheville (NC) Citizen Times. We are looking for (and asking for) stories about how the storm impacted hospices--staff and patients--and opportunities to assist. 

New coalition launches to advance palliative cancer care Hospice News; by Jim Parker; 9/30/24 A new organization, Together for Supportive Cancer Care, launched Monday with a mission to expand access to palliative care among cancer patients. A charitable group, The Sheri and Les Biller Family Foundation, convened more than 40 member organizations, including health care providers, pharmaceutical companies, patient advocacy groups, public policy experts, employers and insurers, among others. “For decades, leaders around our country have worked to show the promise and impact of supportive care programs for people living with cancer, their caregivers and their loved ones,” said Audrey Haberman, the foundation’s CEO, in a statement. “The launch of Together for Supportive Cancer Care builds on this work and is an important step toward creating a health care system where early and ongoing access to supportive care is not a privilege, but a fundamental part of the cancer journey for everyone.” 

No matter how you feel, get up, dress up, show up, and never give up. ~Regina Brett

Featured Hospice Fund Raisers - compiled by Hospice & Palliative Care TodayCompiled from numerous hospice press releases; by Joy Berger, editor; 9/26/24As hospice and palliative care organizations wrap up summer fundraisers and move into autumn events, we have been compiling sample fundraisers, looking for themes, community engagement, success, and creativity. Typically, we post outcomes--after an event--versus promoting it prior to the event. We hope that this compilation celebrates all persons involved, and serves as a catalyst for fresh fundraising efforts. Enjoy! We welcome your thoughts on this post.   

[The Netherlands] The focus on life-prolonging anticancer treatment hampers shared decision-making in people with advanced cancer: A qualitative embedded multiple-case studyPalliative Medicine; Daisy Jm Ermers, Maartje J van Geel, Yvonne Engels, Demi Kellenaers, Anouk Sj Schuurmans, Floortje K Ploos van Amstel, Carla Ml van Herpen, Yvonne Schoon, Henk J Schers, Kris Cp Vissers, Evelien Jm Kuip, Marieke Perry; 9/24Implementing shared decision-making in oncology practice is often limited, particularly integrating the patient's context into decision-making. Four themes were identified [in this study]: shared decision-making is a dynamic and continuous process (1), in which the medical oncologist's treatment recommendation is central (2), fuelled by the patients' experience of not having a choice (3), and integrating the patient's context into shared decision-making was considered important but hampered (4), for example, by the association with the terminal phase. The prevailing tendency among medical oncologists and persons with advanced cancer to prioritize life-prolonging anticancer treatments restricts the potential for shared decision-making.

From small to tall: breed-varied household pet dogs can be trained to detect Parkinson's DiseaseAnimal Cognition; Lisa Holt, Samuel V Johnston; 10/24Parkinson's Disease (PD) is a clinically diagnosed disease that carries a reported misdiagnosis rate of 10-20%. Recent scientific discoveries have provided evidence of volatile organic compounds in sebum that are unique to patients with PD. Twenty-three canines of varying breeds, ages, and environmental backgrounds were included. For this two-year reporting period, when averaged as a group, the 23 dogs were 89% sensitive and 87% specific to olfactory distinction between PD-positive and PD-negative human donor samples. Study findings support the application of companion dogs, trained with force-free, reward-based methodologies, for the detection of PD-positive and PD-negative samples under controlled conditions.

Racial, ethnic, and socioeconomic differences in critical care near the end of life: A narrative reviewCritical Care Clinics; Katrina E Hauschildt, Judith B Vick, Deepshikha Charan Ashana; 10/24Patients from groups that are racially/ethnically minoritized or of low socioeconomic status receive more intensive care near the end of life, endorse preferences for more life-sustaining treatments, experience lower quality communication from clinicians, and report worse quality of dying than other patients. There are many contributory factors, including system (eg, lack of intensive outpatient symptom management resources), clinician (eg, low-quality serious illness communication), and patient (eg, cultural norms) factors. System and clinician factors contribute to disparities and ought to be remedied, while patient factors simply reflect differences in care and may not be appropriate targets for intervention.

Trends in location of death for individuals with pediatric cancerJAMA Pediatrics; Urvish Jain, BSc; Angelin Tresa Mathew, BSc; Bhav Jain, BS; Erin Jay Garbes Feliciano, MD, MBA; Edward Christopher Dee, MD; Leonard H. Wexler, MD; Suzanne L. Wolden, MD; 9/24Children and adolescents with cancer face unique symptomatic, psychosocial, and existential challenges at the end of life (EOL). Premature death, severe pain, and complex symptoms can be distressing for patients and families. In contrast to prior literature regarding trends on adults with cancer, in this study, the pediatric population had lower rates of death at home, potentially because pediatric patients receive more aggressive EOL treatment than adult patients. Our study found differences among racial and ethnic minority groups, who were more likely to die in hospitals, outpatient settings, and ED facilities. As such, developing capacities for palliative care teams that can reach patients across many EOL settings may be valuable for helping patients and families achieve a death congruent with their wishes, particularly because of persistent differences by race over the past 20 years paralleling findings in adult populations.

Saturday newsletters focus on headlines and research - enjoy!

Amazon Wish List from 3 hospices affected by Hurricane HeleneWe have gathered a list of items needed by each of our member organizations that were significantly impacted by Hurricane Helene.  If you are interested in donating items, please click on the links below to make a purchase.  The items will be shipped directly to the member organization(s).  Wish lists from member organizations: