Literature Review

Black caregivers' symptom management, cultural, and religious experiences with home hospice careJournal of Pain and Symptom Management, by Taeyoung Park, Danetta H Sloan, Dulce M Cruz-Oliver, Manney Cary Reid, Sara Czaja, Ronald D Adelman, Ritchell Dignam, Veerawat Phongtankuel; 8/23 Objectives: This study seeks to address this knowledge gap by applying qualitative methods to understand Black/African American caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care.

Black ownership provides a different perspective on hospice careMichigan Chronicle, by Ebony JJ Curry; 10/10/23... In essence, Black-owned hospices stand as beacons of trust, understanding, and respect within the African-American community. They have the power to transform end-of-life care for African Americans, ensuring it is a time of peace, dignity, and compassion, surrounded by providers who understand and honor their cultural context, values, and wishes.

The next best thing to being wise oneself is to live in a circle of those who are. ~C.S. Lewis

What is palliative care?Money, by Bianca Rodriguez Rojas; 1/4/24Palliative care is a healthcare approach that aims to provide comfort and improve the quality of life of people diagnosed with a serious or life-threatening disease such as cancer, heart failure or Parkinson’s.Editor's note: Interesting this appeared in Money magazine...

CDC map shows dramatic increase in illness nationwide: See where it’s worstNexstar Media Wire News / The Hill, by Alix Martichoux; 1/5/24What a difference a week can make. New data released by the Centers for Disease Control and Prevention Friday shows an 18% jump in people testing positive for influenza last week. The number of people going to the doctor with symptoms of respiratory illness — whether it be the flu, COVID, RSV, or none of the above — also continues to trend upward. Now, according to the CDC, 21 states and New York City are experiencing “very high” levels of sickness.

Hospice patient enjoys fishing adventureHickory Daily Record; 12/30/23Carolina Caring’s compassionate hospice and palliative care empowers patients to make the most of each day as they navigate serious illness. One patient, Barbara, has been under hospice care with Carolina Caring and has shared ... with her nurse, Kelly Avery, and social worker, Megan Elmore ... that her fondest memories were of fishing with her family on Lake Hickory. After being diagnosed with chronic obstructive pulmonary disease and chronic heart failure, Barbara’s symptoms were getting increasingly harder to manage. She went from fishing once a week to once a month, to not having fished in over two years. ... Thanks to multiple visits a week from her Carolina Caring care team, Barbara was able to build the confidence to once again cast her line and enjoy the great outdoors. ... Kelly and Megan coordinated with the Carolina Caring Volunteer and Foundation Departments to secure fishing licenses and gather together a spread of Barbara’s favorite foods at Dallas Park & Recreation ponds. For just the second time in the past year, Barbara left the house.

Rosalynn Carter’s impact on caregiversKevin MD Blog, by R. Lynn Barnett; 12/25/23... As caregivers, we are the voice for others, but we also need to be a voice for ourselves. ... I wasn’t prepared, as many people aren’t, for the fiscal and physical aspects of caregiving. ... The toll that caregiving can take is often underrated, understated, and under-appreciated. ... Rosalynn Carter was known as a “Steel Magnolia,” showing the same inner fortitude and mettle, combined with grace, of the main characters in the film of the same name. I think all of us caregivers become steel magnolias. It’s not that we deserve a medal for our actions; we just deserve a little peace.[Editor's Note, Joy Berger for Hospice and Palliative Care Today: Rosalynn Carter founded the Institute for Caregiving 35 years ago, preparing for the surge of Baby Boomers' aging and caregiving needs. Her memorable quote lives on: "There are only four kinds of people in the world--those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." Visit www.rosalynncarter.org for more information.]

Live and let live.Editor's note: I recently listened to an exegetical analysis of this phrase - i.e., consider the meaning of each word individually, then the first two words together, etc., until considering the entire phrase. Give it a shot...

Decision-making for hospitalized incarcerated patients lacking decisional capacityJAMA Network, by Sarah Batbold, BS; Jennifer D. Duke, MD; Kirsten A. Riggan, MA, MS; Erin S. DeMartino, MD; 12/23How does decision-making occur for hospitalized incarcerated persons lacking decisional capacity? In this qualitative study of documentation for 43 hospitalized incarcerated persons without decisional capacity, prison employees appeared to have been involved in decisions for half of the admissions, including participating in family meetings and being asked to authorize invasive procedures.

MedPAC votes to recommend home health payment rate cut, hospice update freezeMcKnights Home Care, by Liza Berger; 1/12/24Per the draft recommendations, the body agreed to put forth cutting the 2024 Medicare home health base payment rate by 7% in calendar year 2025 and freezing the update to 2024 Medicare hospice base payment rates for fiscal year 2025.Publisher's note: Also see MedPAC 1/11/24 meeting summary and presentation.

Place of death before and during the COVID-19 pandemicJAMA Network, by Ben Teasdale, MPhil; Aditya Narayan, BS; Stephanie Harman, MD; Kevin A. Schulman, MD; 1/8/24As recently as 2015, dying at home became more common than dying in a hospital. The COVID-19 pandemic interrupted these trends, as the acute clinical course of severe infection shifted deaths back inside hospitals. Beyond the direct consequence of pandemic-related mortality, indirect associations of factors, such as workforce and resource limitations, disrupted the provision of end-of-life care more broadly, even for patients who were not directly infected with COVID-19. Three years after the start of the pandemic, we investigate the national and ongoing impact of the COVID-19 pandemic and place of death among individuals in the US.

What's in This For You? What's in This For Me?: A Win-Win Perspective of Involving Study Advisory Committee Members in Palliative Care ResearchJ Patient Exp., by Juanita Booker-Vaughns, Dawn Rosini, Romilla Batra, Garrett K Chan, Patrick Dunn, Robert Galvin, Ernest Hopkins 3rd, Eric Isaacs, Constance L Kizzie-Gillett, Margaret Maguire, Martha Navarro, Neha Reddy Pidatala, William Vaughan, Sally Welsh, Pluscedia Williams, Angela Young-Brinn, Kaitlyn Van Allen, Allison M Cuthel, Rebecca Liddicoat Yamarik, Mara Flannery, Keith S Goldfeld, Corita R Grudzen; 1/24Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members' lived experiences and the impact the EMPallA study has had on members both personally and professionally. We detail the (1) benefits SAC members, specifically patients, and caregivers, have had through working on this project. (2) The importance of recruiting diverse SAC members with different lived experiences and leveraging their feedback in clinical research. (3) Value of community capacity building to ensure the common vision of the clinical trial is promoted.

Saturday NewslettersResearch literature is the focus of Saturday newsletters - enjoy!