Literature Review
Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study
03/02/25 at 03:55 AMInterdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study BMC Palliative Care - Part of Springer Nature, Open Acces; by Annica Lagerin, Christina Melin-Johansson, Bodil Holmberg, Tove Godskesen, Elin Hjorth, Lena Junehag, Carina Lundh Hagelin, Anneli Ozanne, Johan Sundelöf & Camilla Udo; 2/19/25... This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model. ... To emphasize the importance of ethical competence for quality patient care, particularly in PC, a combination of care ethics, clinical proficiency, relational skills and effective communication is essential. ... The potential obstacles we identified that require attention include the need for managers ... to support HCPs by allowing time for reflection, developing new routines, and providing education focused on existential conversations in PC. However, the main contribution of this study is the description of the interdisciplinary strategies HCPs used to establish meaningful, existential conversations by maintaining presence, as this paved the way for trusting conversations with patients and next-of-kin. Editor's note: Pair this with today's article, "Why being trustworthy is a leadership hack that drives success."
Risk factors for and health status of socially isolated adults
03/02/25 at 03:50 AMRisk 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.
Research priorities in neuropalliative care-A consensus statement from the International Neuropalliative Care Society
03/02/25 at 03:45 AMResearch priorities in neuropalliative care-A consensus statement from the International Neuropalliative Care SocietyJAMA Neurology; Winnie K. Lau, MD; Corey R. Fehnel, MD, MPH; Zachary A. Macchi, MD; Ambereen K. Mehta, MD, MPH; Manon Auffret, PharmD, PhD; Jori F. Bogetz, MD; Jori E. Fleisher, MD, MSCE; Jerome J. Graber, MD, MPH; Heather E. Leeper, MD, MS; Heena R. Manglani-Terranova, PhD; Susanne Muehlschlegel, MD, MPH; Emily L. Mroz, PhD; Elizabeth J. Pedowitz, MD; Usha Ramanathan, MSc, MD; Max Sarmet, SLP, MSc; Nathan A. Shlobin, BA; Leonard Sokol, MD; Susan Allyson Weeks, MA; Jiayun Xu, PhD, RN; Helen Bundy Medsger; Claire J. Creutzfeldt, MD; Ana-Maria Vranceanu, PhD; Darin B. Zahuranec, MD, MS; David Y. Hwang, MD; 2/25The International Neuropalliative Care Society Research Committee convened an interdisciplinary panel of experts, including clinicians, scientists, people with neurologic disease, and care partners, to identify priority research areas for the advancement of neuropalliative care as a field. Three priority areas highlighted in this review include (1) patient- and care partner–centered symptoms and outcomes specific to neurologic illness and tools for their assessment, (2) development of effective neuropalliative care interventions and delivery models, and (3) methods to support the ability to foster, deliver, and measure goal-concordant care over time.
Over a quarter of adolescents, young adults with cancer who want to die at home do not
03/02/25 at 03:40 AMOver 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."
Executive Personnel Changes - 2/21/25
03/02/25 at 03:35 AMExecutive Personnel Changes - 2/21/25
Hospice of the Chesapeake Advanced Cardiac Care Program seeks to reduce hospital visits
03/02/25 at 03:30 AMHospice 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.
Forget perks—leadership starts with asking employees what they need
03/02/25 at 03:25 AMForget perks—leadership starts with asking employees what they need Forbes; by Benjamin Laker; 2/25/25 Employee well-being isn’t just a perk—it’s a business imperative. As organizations struggle with high turnover, burnout, and shifting workforce expectations, leaders must rethink how they engage and support employees. Research consistently shows that investing in well-being leads to measurable gains in productivity, retention, and performance. A recent study published by BMJ Leader examined how a structured, data-driven approach to improving workplace culture can yield transformative results—using the well-being initiative at Royal Free Hospital as a case study. ... The program, which was the focus of the BMJ Leader study, incorporated systematic conversations based on the Joy in Work Framework, identifying key challenges and implementing targeted solutions. Following implementation, workplace satisfaction surged by 76%, highlighting the significant impact of addressing staff concerns directly. Employees became more engaged in organizational initiatives, fostering a culture of active participation rather than passive compliance.
3 bold and disruptive strategies to retain top-performing leaders
03/02/25 at 03:20 AM3 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. ...
Home health, hospice CEO average pay tops $400K: report
03/02/25 at 03:15 AMHome health, hospice CEO average pay tops $400K: report McKnights Home Care; by Adam Healy; 2/19/25 The Hospital & Healthcare Compensation Service’s newly released 2024-2025 Multi-Facility Corporate Compensation Report offered an in-depth look at home health and hospice executives’ average earnings. The average CEO salary at a multifacility home health and hospice firm was $403,000, with the top 10% earning $603,000 and the bottom 10% making $278,000. Average salaries varied among other C-suite executives, with chief operating officers earning $247,000, top financial executives earning $265,000, and chief medical officers earning $285,000, on average, according to the report.
[UK - St. Christopher's Hospice] Woman with rare brain disease dances with husband for first time in years
03/02/25 at 03:10 AM[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.
North Texas doctor helps parents facing infant loss deal with the unimaginable
03/02/25 at 03:05 AMNorth Texas doctor helps parents facing infant loss deal with the unimaginableCBS News - Texas; by Andrea Lucia, Lexi Salazar, Katie Standing; 2/25/25[Background story for parents Yvette and Thoms Ngo upon dealing with the news that their in-utero baby girl Zoe was diagnosed with Trisomy 13, would likely miscarry, or die soon after birth. Dr. Terri Weinman, their neonatologist offered rich palliative care interventions and support.] "When we met Dr. Weinman and her team the first time, she would say things like, 'So, what are we going to do when Zoey is here,' which changed my mindset completely," Yvette Ngo said. ... For the first time, the Ngos began to consider what Zoey's life, short as it might be, could look like. "It made us more comfortable with the situation, I mean as comfortable as you can be," Thomas Ngo said. "She just gave us hope." Zoey was born on April 18, 2024. She met her parents, her siblings and her grandparents. She was baptized. "They made us little crafts and mementos for us to take home, like footprints, really ways to help cherish Zoey's life," Yvette Ngo said. "They took her heartbeat and recorded it for us. Little things that we wouldn't necessarily think of." Zoey even had a chance to go home. But after 36 hours of life, Zoey passed away in her father's arms. The perinatal palliative care Zoey received remains rare. But for families like the Ngos, it provides a small sense of control when it's needed most. "Being able to plan so much in advance and think about all the different scenarios and how we wanted it," Yvette Ngo said. " I think, looking back on our time with Zoey..." "We wouldn't have done anything differently," Thomas Ngo said. Editor's note: Pair this with "Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing students," posted 2/24/25.
Today's Encouragement
03/02/25 at 03:00 AMThe first to apologize is the bravest. The first to forgive is the strongest. And the first to forget is the happiest... ~Unknown
New ACS research finds low uptake of supportive care at the end-of-life for patients with advanced cancer
03/02/25 at 03:00 AMNew 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."
Sunday newsletters
03/02/25 at 03:00 AMSunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!
Today's Encouragement
03/01/25 at 03:55 AMDon’t let yesterday take up too much of today. ~ Will Rogers
Shareholder payouts among large publicly traded health care companies
03/01/25 at 03:45 AMShareholder 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.
New FDA policies could limit the full value of AI in medicine
03/01/25 at 03:40 AMNew FDA policies could limit the full value of AI in medicineJAMA Health Forum; Scott Gottlieb, MD; 2/25Some experts within the [AI] field predict that in the next several years, developers may realize artificial general intelligence (AGI)—a revolutionary form of AI capable of understanding, learning, and applying knowledge across various tasks with human-like proficiency. Unlike today’s narrow AI systems that excel at tasks such as image recognition or language translation, AGI can tackle any intellectual challenge a human can, demonstrating a deep comprehension of diverse disciplines. Artificial intelligence tools with advanced analytical capabilities used in clinical practice, especially tools that synthesize complex clinical information from distinct sources, may automatically be classified as medical devices ... [by the US Food and Drug Administration]. This could deny health care clinicians access to AI tools that have the potential to transform the productivity and safety of medical care.
Patients’ trust in health systems to use artificial intelligence
03/01/25 at 03:35 AMPatients’ 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.
Challenges to video visits for patients with non–English language preference-A qualitative study
03/01/25 at 03:30 AMChallenges to video visits for patients with non–English language preference-A qualitative studyJAMA Network Open; Marianna Kong, MD; Francine Rios-Fetchko, BA; Madelyn Olmos-Rodriguez, BA; Linda Branagan, PhD; Bradley Iott, MPH, MS, PhD; Therese Chan Tack, DO, MPH; Carol Yarbrough, MBA; Kevin Grumbach, MD; Alicia Fernandez, MD; 2/25Telemedicine, or synchronous video or audio-only visits, has made clinical encounters more convenient and accessible for many patients. Prior to the COVID-19 pandemic, video and telephone visits comprised a small minority of primary care visits, but by April 2020, approximately one-half of US physicians were treating patients virtually and nonurgent telemedicine video visits increased by more than 600%. In this qualitative study, participants with NELP [non-English language preference] perceived multiple barriers to video visits, including greater communication difficulties, lower medical evaluation quality, and technical issues. These findings suggest that addressable technical challenges associated with language barriers hamper access to video visits and decrease motivation for use and that interventions are needed to increase telehealth equity.
Associations between end-stage ALS care and specialty palliative care: A hypothesis-generating study
03/01/25 at 03:25 AMAssociations 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.
Influence of culture and spiritual tradition on support for families of children dying in intensive care units
03/01/25 at 03:20 AMInfluence of culture and spiritual tradition on support for families of children dying in intensive care unitsJournal of Pediatric Nursing; Sung-Jin Jeanie Ju, Janie Ito, Aubree Lin, Dagmar Grefe, Jennifer Baird, Rebecca Ortiz La Banca Barber; 2/25Parents utilize spirituality as a means of coping during and after a child's death. Complexity of grief associated with loss of a child suggests the paramount importance of providing appropriate support for parents while experiencing their child's critical illness or end of life. Findings indicated three themes that illustrate the end-of-life and bereavement process: 1) Coping during hospitalization and the end-of-life stage; 2) coping during the bereavement stage; and 3) advice for parents and staff. To integrate the results into practice, hospital-wide education for staff on the importance of cultural and spiritual sensitivity is recommended. Additionally, collaboration with spiritual care teams, especially for patients and families facing complex diagnoses or advance care planning, will enhance the provision of culturally and spiritually sensitive care.
Development of an interprofessional clinician training in pediatric serious illness communication
03/01/25 at 03:15 AMDevelopment 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.
“You sure feel like you’re alone, kind of flailing away out there”: Family caregiver perspectives of caring for an individual with glioblastoma multiforme
03/01/25 at 03:10 AM“You sure feel like you’re alone, kind of flailing away out there”: Family caregiver perspectives of caring for an individual with glioblastoma multiformeCambridge University Press; by Christy Muasher-Kerwin, Abby Baumbach, Yujun Liu, M. Courtney Hughes; 2/25Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer... Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024... Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support... Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.
Informal caregivers connecting on the Web: Content analysis of posts on discussion forums
03/01/25 at 03:05 AMInformal caregivers connecting on the Web: Content analysis of posts on discussion forumsJMIR Formative Research; by Michelle L Foster, Chinenye Egwuonwu, Erin Vernon, Mohammad Alarifi, M Courtney HughesAbout 53 million adults in the United States offer informal care to family and friends with disease or disability. Such care has an estimated economic value of US $600 million. Most informal caregivers are not paid nor trained in caregiving, with many experiencing higher-than-average levels of stress and depression and lower levels of physical health. Some informal caregivers participate in web-based forums related to their caregiving role. This study aimed to explore how informal caregivers use easy-to-access caregiving web-based forums, including the types of information they share and seek from others... Domains identified included handling interpersonal challenges, navigating complicated systems, gathering tactical coping strategies, managing emotions, and connecting with others in similar situations... Informal caregivers play an essential role in society. Many experience multifaceted challenges related to their caregiving role, and some turn to the internet for community. Accessing web-based discussion forums is a low-barrier method for informal caregivers to connect with others who may be experiencing similar emotions and challenges. Gaining a greater understanding of the ways informal caregivers seek advice and offer support to one another provides insight into the challenges they face.
[UK] Supporting the bereaved child in the adult ICU: A narrative review
03/01/25 at 03:05 AM[UK] Supporting the bereaved child in the adult ICU: A narrative reviewIntensive Care Medicine; Annelies Rowland, Carole Boulanger, Louise Dalton; 2/25Childhood bereavement is a significant issue globally, affecting millions of children each year, with incidence rates significantly increasing following the COVID-19 pandemic. The loss of an important adult, particularly in the ICU environment, can lead to lasting psychological and behavioural challenges for children. Both families and healthcare professionals (HCPs) often feel unprepared and uncomfortable engaging in honest, supportive conversations with children about bereavement, further complicating children's grief processing. This narrative review examines the pivotal role ICU HCPs can play in facilitating child-centred bereavement support, focusing on promoting honest communication, supportive visitation practices, creating a child-friendly and humanised ICU environment, and encouraging child involvement during end-of-life care. The review also advocates for specialised training to equip ICU staff with the necessary skills to support grieving children and families.
