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Welcome to Hospice & Palliative Care Today, a daily email summarizing numerous topics essential for understanding the current landscape of serious illness and end-of-life care. Recent TCN Talks podcasts / videos reviewing Hospice & Palliative Care Today monthly content available: January 2024; February 2024; March 2024.
Saturday newsletters focus on headlines and research - enjoy!
Social Model Hospice: Providing hospice and palliative care for a homeless population in Salt Lake City, Utah
Journal of Hospice & Palliative Nursing; by Francine Bench Jensen, PhD, RN; Deborah Thorpe, PhD, APRN; 4/24
Abstract: Health care for the homeless population is a complex challenge and represents a significant gap in care, particularly for those at the end of life. Hospice care may be desired but is rarely an option for people without residences, social support, and payment sources. Social model hospice is a unique paradigm of care delivery that offers a viable solution to make hospice and palliative care possible for this population. ... Recommendations for establishing social model hospices are made: key strategies include identifying stakeholders dedicated to alleviating end-of-life homelessness needs, doing a formal needs assessment to identify community resource deficits, and forming mentoring relationships with established programs.
Shocked at end-of-life: An educational video for hospice workers about Implantable Cardioverter-Defibrillators
Journal of Pain and Symptom Management; by Sarah Godfrey, MD, MPH; Christine L. Chen, MD; Melanie S. Sulistio, MD; Sharika Kumar, MD; and Kelley Newcomer, MD; 2/24
Introduction: Hundreds of thousands of patients with implantable cardioverter-defibrillators (ICDs) die yearly. Though ICD shocks can be lifesaving, they can also be severely painful. One third of ICD patients are shocked in the last day of life irrespective of DNR status. Over 97% of hospice programs admit patients with ICDs, yet only 10% have deactivation policies and less than 50% of hospice patients have their ICD deactivated. ...
Conclusion: Hospice personnel have limited knowledge about ICDs, prohibiting best care of patients with these devices at EOL. A short educational video increased knowledge and may serve as a helpful tool. Improving ICD knowledge amongst hospice personnel is essential to ensuring the unique needs of hospice patients with ICDs are met.
The spectrum of end-of-life experiences: A tool for advancing death education
Omega; by Shared Crossing Research Initiative; 3/24
Abstract: Studies on end-of-life experiences (ELEs) suggest that caregivers and loved ones of dying patients also have ELEs, though these are rarely explored. This article introduces the Spectrum of End-of-Life Experiences (SELE) as a descriptive list of types of ELEs reported by all members of the care unit, including dying patients, their caregivers, and their loved ones. We applied SELE towards identifying ELEs reported by 143 caregivers and loved ones and successfully identified every experience. Interviews revealed that participants viewed their ELEs as profound communicative events, yet a substantial minority also reported struggling to name and process these experiences. We propose that SELE be included in death education to raise awareness about ELEs that can occur within the care unit, and we suggest that SELE has additional applications, including use as a prognostic aid in end-of-life care and as a therapeutic aid for bereavement support.
Home care clinicians' perspectives on Advance Care Planning for patients at risk for becoming incapacitated with no evident advance directives or surrogates
Journal of Hospice & Palliative Nursing; by Landau, Aviv Y. PhD, MSW; Venkatram, Chinmayi BA; Song, Jiyoun PhD, AGACNP-BC, APRN; Topaz, Maxim PhD; Klitzman, Robert MD; Shang, Jingjing PhD; Stone, Patricia PhD; McDonald, Margaret MSW; Cohen, Bevin PhD; 4/24
Abstract: ... This qualitative descriptive study elicited perspectives of home health nurses and social workers regarding barriers and facilitators to creating advance care plans in home health settings, with particular attention to patients with few familial or social contacts who can serve as surrogate decision-makers. ... Participants reported a multitude of barriers to supporting patients with advance care planning at the provider level ... Participants noted that greater socialization and connection to existing educational resources regarding the intended purpose, scope, and applicability of advance directives could benefit home care patients.
Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians
Cambridge University Press; by Eran Ben-Arye, Noah Samuels, Yael Keshet, Miri Golan, Erez Baruch, and Jama Dagash; 4/8/24
Objectives: The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients’ unmet needs and quality of life (QoL)-related concerns.
Conclusions: While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.
What's in the Black Box of a successful nurse and social worker team palliative telecare intervention (ADAPT)? (RP317)
Journal of Pain and Symptom Management; by Lyndsay DeGroot, PhD, RN, CNE; Kevin Wells; Brianne Morgan, BSN; Michelle Upham, MSW, LICSW; David B. Bekelman, MD, MPH; 5/24
Key Message: A nurse and social worker palliative telecare team provided structured symptom management, psychosocial care, and individualized medical changes to improve quality of life, depression, and anxiety for patients with COPD, HF, and ILD.
Impact: A nurse and social work palliative telecare team used collaborative care to tailor recommendations to the unique needs and symptoms of each patient, thereby improving quality of life.
Nonphysical Suffering: An under-resourced and key role for hospice and palliative care social workers
Journal of Social Work in End-of-Life & Palliative Care; by Maxxine Rattner & Cheryl-Anne Cait; 11/10/23
... Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients’ nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients’ nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients’ needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients’ nonphysical suffering due to the psychosocial focus of their role.
When a parent dies: A scoping review of protective and risk processes for childhood bereavement
Death Studies; by Rebecca Hoppe, Marcia A. Winter, Chelsea D. William, and Irwin Sandler; 4/15/24
Abstract: The death of a parent can have profound effects on child development. ... A scoping review was conducted in samples of parentally bereaved children to identify key processes, synthesize results, and determine research gaps. This scoping review identified 23 studies (mainly from the United States), published between 1990 and 2023, that reported child (ages 3–22 years) individual and/or environmental protective and/or risk processes that contributed to bereavement outcomes. Findings can be used to apprise clinicians, families, and policymakers of the unique nature of childhood bereavement and to identify malleable processes to target in interventions designed to prevent problematic outcomes in bereaved children.
Funding: This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development through the Ruth L. Kirschstein National Research Service Award [F31HD110247].
An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing
International Journal of Palliative Nursing; by Mandy J Brimble, Sally Anstey, Jane Davies, Catherine Dunn; 4/17/24
Aim: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents.
Findings: Three overarching, cross-cutting themes were identified—purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction.
Substance use disorders in hospice palliative care: A narrative review of challenges and a case for physician intervention
Cambridge University Press; by Lauren Rudy and Emilie Lacroix; 2/29/24
Objectives: Substance use disorders (SUDs) are frequently encountered in hospice palliative care (HPC) and pose substantial quality-of-life issues for patients. However, most HPC physicians do not directly treat their patients’ SUDs due to several institutional and personal barriers. ...
Results: ... Recommendations for physicians and training environments to address these challenges include developing familiarity with standardized SUD assessment tools and pain management practice guidelines, creating and disseminating visual campaigns to combat stigma, including SUD assessment and intervention as fellowship competencies, and obtaining additional training in psychosocial interventions.
Association between opioid use disorder and palliative care: a cohort study using linked health administrative data in Ontario, Canada
Canadian Medical Association Journal (CMAJ); by Jenny Lau, Mary M. Scott, Karl Everett, Tara Gomes, Peter Tanuseputro, Sheila Jennings, Rebecca Bagnarol, Camilla Zimmermann and Sarina R. Isenbergl; 4/29/24
Background: People with opioid use disorder (OUD) are at risk of premature death and can benefit from palliative care. We sought to compare palliative care provision for decedents with and without OUD.
Conclusion: We identified important differences in palliative care provided at the end of life between people with and without OUD. People with OUD were less likely to receive palliative care despite accessing palliative care earlier, which may reflect their end-of-life illness trajectories and underlying structural vulnerability that may prompt them to receive palliative care primarily in acute care. Health care providers should receive training in palliative care and addiction medicine to support people with OUD.
I wanted to run. I wanted to fly. I was cryin’. I wanted to tell the whole world who he was and what we had done with him, you know, and he was our horse. Other than when my four children and my grandchild was born, I’ve never been happier. You want to see the greatest, and the greatest of all races is the Kentucky Derby. That is the race, the Kentucky Derby, the Run for the Roses. - John Sosby, former manager of Claiborne Farm
Editor's Note: Happy 150th Derby Day, from Louisville, KY! (Home of Joy Berger, Editor-in-Chief)
The Fine Print:
Paywalls: Some links may take readers to articles that either require registration or are behind a paywall. Disclaimer: Hospice & Palliative Care Today provides brief summaries of news stories of interest to hospice, palliative, and end-of-life care professionals (typically taken directly from the source article). Hospice & Palliative Care Today is not responsible or liable for the validity or reliability of information in these articles and directs the reader to authors of the source articles for questions or comments. Additionally, Dr. Cordt Kassner, Publisher, and Dr. Joy Berger, Editor in Chief, welcome your feedback regarding content of Hospice & Palliative Care Today. Unsubscribe: Hospice & Palliative Care Today is a free subscription email. If you believe you have received this email in error, or if you no longer wish to receive Hospice & Palliative Care Today, please unsubscribe here or reply to this email with the message “Unsubscribe”. Thank you.