Literature Review

'Dear God, I need help on this one': How a prayer from Hildegard House's founder was answered ABC News WHAS-11, Louisville, KY; by Doug Proffitt; 2/27/25 Up from the dirt of an 1800's camelback style house on Story Avenue, in Louisville’s Butchertown neighborhood, Karen Cassidy has a plan. "We’re standing on the original dirt floor of the house, that’s the way they built things," she said. She's the former nurse who founded the Hildegard House 11 years ago. Hildegard is a place for the terminally ill to die in peace. With three private bedrooms and around the clock care, it’s a peaceful haven for people who have no home, or loved ones to care for them, so that they may die with dignity.  ... It is funded successfully and solely by both private donations and foundations. Now, in the new space, the plan is to build a refuge called the "Center for Care Giver Education" at the Story Avenue location. “This is for caregivers that are at home trying to maintain their loved ones at home," Cassidy said. ... At the new center they will teach families the basics. ... The owners of the historic Story Avenue house helped by cutting her a deal. She says they told her they would sell it to her $100,000 less than what they put it on the market for. Donations from foundations helped her buy the house with cash. But then, she got estimates for the renovation and restoration totaling $450,000. “I said 'dear God, I need help on this one,'” Cassidy said. Then God, from that prayer, appeared in a most modern way. ... “Two weeks later I got an email from an attorney who said, ‘Can you meet me for lunch? Somebody has left their estate to Hildegard House,'" she told WHAS11 News. "It was $450,000. That did it!” The out-of-the-heavens donation means they are funding the renovation, top to bottom with cash. Nothing will be owed. Cassidy later learned why that money came her way. “We had cared for someone’s mother and they were so grateful,” she said. Editor's note: I am honored to serve on the Board of Directors of the Hildegard House. I continue to be amazed at the profound care and superb systems envisioned, implemented and moved forward by Karen Cassidy, her staff, 80+ volunteers, the Board, and community support.

Hospice of the Piedmont offers discount book, conversation starters for family and friends Augusta Free Press, Waynesboro, VA; by Crystal Graham; 2/26/25 Hospice of the Piedmont has your ticket to discounts at restaurants, theaters, wineries and breweries as well as advice for starting a meaningful conversation with loved ones. ... The printed coupon book offers buy-one-get-one-free entrees, free theater tickets and half price wine tastings. It also includes thoughtful conversation starters designed to spark meaningful discussions with family and friends about life and its final journey. “So much of life happens around the dinner table, at a winery with friends or on a night out at the theater,” said Jenn Downs, chief marketing and development officer at HOP. “We wanted to give people a way to enjoy those experiences while encouraging people to have the kinds of conversations that truly matter.” Editor's note: Applause to Hospice of the Piedmont for this creative, engaging integration of community partnerships (with restaurants, theaters, etc.), hospice fund-raising, and catalyst for meaningful, potentially life-changing dialogues.

Risk factors for and health status of socially isolated adultsJAMA Network Open; Tarun Ramesh, BS; Kushal Kadakia, MSc; Marcela Horvitz-Lennon, MD, MPH; Joshua Breslau, PhD, ScD; Hao Yu, PhD; 1/25In 2023, the Surgeon General issued an advisory on the epidemic of loneliness and social isolation, calling for more research and policy interventions to address these challenges. The overall prevalence of social isolation in our study was 3%, which is lower than other determinants of health, such as smoking, poverty, and inadequate health insurance. Our results indicate 3 broad and likely interrelated populations at risk for social isolation, including racial and ethnic minority groups, those with financial insecurity (ie, unemployed, uninsured, lower income), and those with chronic health conditions, with depression being a large factor. We also found that the socially isolated adults reported worse health status compared with those without social isolation.

Over a quarter of adolescents, young adults with cancer who want to die at home do not Healio; by Jennifer Byrne; 2/20/25 More than one-fourth of adolescents and young adults with cancer who wished to die at home did not attain this goal, according to research published in JAMA Network Open. Researchers conducted a retrospective cohort study that included adolescents and young adults (AYA; age range, 12 to 19 years) with cancer who died between 2003 and 2019. The cohort included patients treated at Dana-Farber Cancer Institute, Kaiser Permanente Northern California or Kaiser Permanente Southern California. ... Healio spoke with Odejide about the rationale for the study, the importance of the findings, and strategies oncologists can employ to ensure more goal-concordant end-of-life care for AYA patients with advanced cancers. [Click here for Helio's discussion with the lead researcher, Oreofe O. Odejide, MD, MPH, associate professor of medicine at Dana-Farber Cancer Institute.]  Editor's note: Examine this JAMA article, which we posted in our Saturday Research issue, 1/18/25: "Preferred and actual location of death in adolescents and young adults with cancer."

Hospice of the Chesapeake Advanced Cardiac Care Program seeks to reduce hospital visits Southern Maryland News Net; Press Release; 2/20/25Hospice of the Chesapeake, in collaboration with the American Heart Association (AHA) and the National Partnership for Healthcare and Hospice Innovation (NPHI) announces the Advanced Cardiac Care Program to address one of the nation’s largest killers of Americans – heart disease. Each year, more Americans die from heart disease than any other condition, including cancer. Heart disease is also a leading cause of hospitalization: patients with congestive heart failure alone account for more than one million inpatient admissions annually. "By offering heart disease patients the right educational resources, we empower them to take control of their health,” Hospice of the Chesapeake Vice President of Medical Affairs & Hospice Medical Director Dr. Sonja Richmond said. “The resources available through the Advanced Cardiac Care Program can help patients and caregivers better manage their condition, reducing the likelihood of hospital visits and improving their quality of life.” ... Carole Fisher, President of NPHI [said,] “Far too many die alone in a hospital or nursing facility, when instead our hospice teams could care for them wherever they reside and they could enjoy a far higher quality of life surrounded by loved ones.”Editor's note: Links to Hospice of the Chesapeake; AHA'sHospice Care" webpage; NPHI's Advanced Cardiac Care Program.   

3 bold and disruptive strategies to retain top-performing leaders Forbes; by Dr. Cheryl Robinson; 2/19/25 ... The Global Leadership Forecast 2025 by DDI reveals a concerning trend: leaders are burning out at unprecedented rates. With 40% of leaders contemplating resignation due to burnout, top talent is either stepping down or disengaging, leaving organizations vulnerable to performance decline and talent gaps. The stakes are high. ...

[UK - St. Christopher's Hospice] Woman with rare brain disease dances with husband for first time in yearsReposted in Daily Journal from Talker News, Tupelo, MS; by Isobel Williams; 2/20/25 This is the touching moment an elderly woman living with a rare brain disease slow danced with her husband - for the first time in years. Constance Bartholomew, 69, has progressive supranuclear palsy (PSP), a neurological condition which has left her struggling to walk. The disorder - which is estimated to affect around 4,000 people in the UK - can cause problems with balance, movement, vision, speech and swallowing. Constance began physiotherapy at St. Christopher's Hospice in Sydenham, south-east London in September last year - at which point husband Dennis, 72, joked he would pay a million pounds to dance with her again. Upon hearing the remark, rehab assistant Ralitsa Angelova ... made it her mission to make it happen.  ... “She is unable to walk, to articulate, her eyesight has failed. It’s a terrible condition. I wouldn’t wish it on anyone. But she is fully aware. There is absolutely nothing wrong with her memory or comprehension. ..." The video has been released as hospices in London come together to change perceptions of hospice care and highlight the vital importance of gifts in wills to their holistic palliative care services for adults and children in their communities. The hospices are taking part in the This is Hospice Care campaign, a national collaboration of 143 hospices across England, Scotland and Wales, brought together by Hospice UK.Editor's note: St. Christopher's Hospice--founded by Dame Cicely Saunders--is the home for modern day hospice care.  Click here for a YouTube video of Constance and Dennis. Click here for the article we posted on 2/21 about the UK's "This Is Hospice Care" initiative.

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

New ACS research finds low uptake of supportive care at the end-of-life for patients with advanced cancer EurekAlert! - American Association for the Advancement of Science (AAAS); Peer-Reviewed Publication by American Cancer Society; 2/21/25  Despite considerable efforts to improve the quality of end-of-life care in the United States, a new retrospective study led by American Cancer Society (ACS) researchers revealed that close to half of patients with advanced cancer received potentially aggressive care at the end-of-life at the expense of supportive care. The findings are out today in the Journal of the American Medical Association (JAMA) Health Forum. ... Study results showed only one-quarter of patients diagnosed with advanced cancer received any palliative care in the last 6 months of life, and those who received it did so mainly in the month of death. Overall, 45% of decedents experienced any indicator of potentially aggressive care. There was an increase in the mean number of acute care visits (from 14.0 to 46.2 per 100 person-months), hospice use (from 6.6 to 73.9 per 100 person-months), palliative care (from 2.6 to 26.1 per 100 person-months), and advanced care planning (from 1.7 to 12.8 per 100 person-months) over the last 6 months of life. ... Editor's note: Click here for the research article, "Contemporary Patterns of End-of-Life Care Among Medicare Beneficiaries With Advanced Cancer."

Shareholder payouts among large publicly traded health care companiesJAMA Internal Medicine; Victor Roy, MD, PhD; Victor Amana, MPH; Joseph S. Ross, MD, MHS; Cary P. Gross, MD; 2/25There is growing concern that a large proportion of US health care spending appears to be directed to corporate shareholders rather than enhancing affordable access, improving quality of care, or advancing research and development. Total shareholder payouts from S&P 500 health care companies have more than tripled in the past 20 years. Payouts were concentrated among a small number of companies, with the pharmaceutical, biotechnology, managed care, and health care equipment and supplies subindustries distributing the largest amounts. Given greater health care affordability challenges for US households and the major role of federal and state governments in financing the health care sector, shareholder payouts have critical implications for stakeholders, especially patients. Increasing capital distributions to shareholders of publicly traded companies may be associated with higher prices and may not be reinvested in improving access, delivery, or research and development.

Patients’ trust in health systems to use artificial intelligenceJAMA Network Open; Paige Nong, PhD; Jodyn Platt, PhD; 2/25This analysis found low trust in health care systems to use AI responsibly and protect patients from AI-related harms. General trust in the health care system, but not health literacy or AI knowledge, was associated with these perceptions. Low trust in health care systems to use AI indicates a need for improved communication and investments in organizational trustworthiness.

Associations between end-stage ALS care and specialty palliative care: A hypothesis-generating studyMuscle and Nerve; Christi M Lero, Annabelle Yang, Elyse Everett, Kyle A Pitzer, Kelly McCoy Gross, Karla T Washington; 2/25Amyotrophic lateral sclerosis (ALS) care is typically delivered via a multidisciplinary approach that may include specialty palliative care (SPC). Patients who received SPC (59%), had lower mean forced vital capacity ... , and more often used respiratory support ... , participated in goals of care conversations ... , reported a healthcare proxy ... , and enrolled in hospice ... than patients who received standard care alone. No differences between groups were found in duration of illness (mean = 51.7 months), use of assistive feeding, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) scores, ... documentation of a healthcare proxy, length of hospice stay (mean = 47.3 days), or location of death.

Development of an interprofessional clinician training in pediatric serious illness communicationJournal of Palliative Medicine; Danielle D DeCourcey, Rachelle Bernacki, John Carozza, Sithya Lach, Andrea Wershof Schwartz; 2/25Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians in ACP communication. We developed an interactive, skills-based three-hour synchronous online clinician training program using Kern's Six-Step Curriculum Design, incorporating didactic and simulated patient encounters with a trained actor. Following training, 97% of participants were highly satisfied with training quality, and 100% endorsed that they would recommend it to colleagues. Additionally, clinician self-reported comfort discussing fundamental elements of ACP significantly increased following the training.