Literature Review
NHPCO hosts final Annual Leadership Conference, welcomes evolution to National Alliance for Care at Home
09/23/24 at 02:00 AMNHPCO hosts final Annual Leadership Conference, welcomes evolution to National Alliance for Care at Home NHPOC / National Alliance for Care at Home; by Elyssa Katz; 9/20/24 The National Hospice and Palliative Care Organization (NHPCO) hosted its annual leadership conference (ALC2024) in Denver, Colorado September 14–18, 2024. This conference is the final conference that legacy NHPCO is hosting as it joins with the National Association for Home Care and Hospice (NAHC) to become the National Alliance for Care at Home (the Alliance). NAHC will host its final conference on October 20-24, 2024, in Tampa, Florida. Over 1,000 attendees and exhibitors joined for the in-person program which included action-packed days of keynotes, concurrent education sessions, networking opportunities, award presentations, and celebrations. ... Thanks to the generous support of attendees [at Tuesday evening's Gala], the National Hospice Foundation, NHPCO’s fundraising affiliate, raised over $200,000 throughout the evening. All funds will support the Lighthouse of Hope fund to help fulfill patients’ last wishes. ... As NHPCO celebrates the lasting impact its member have had since 1978 and looks ahead to the Alliance, ALC2024 also served as an opportunity to recognize, celebrate, and honor the many leaders from across the nation who played critical roles in shaping the hospice and palliative care community.
Viral video of brother's last days in hospice bring smiles to family after his death
09/23/24 at 02:00 AMWoman explains viral video of brother with hospice nurses before he died ABC News - GMA; Shafiq Najib; 9/20/24 Marcella Brown's little brother, Omar Mamoe, died of appendix cancer at 34. A woman explained the story behind the viral video of her brother going on a walk and having fun with the nurses during his final days in hospice before his death. In an Instagram video shared by Marcella Brown of Austin, Texas, recently, her late brother Omar Mamoe can be seen sitting in a wheelchair as he was about to exit his room accompanied by the nurses who entertained him by rapping to a song, "It Was a Good Day," by Ice Cube. The clip, which has garnered over 5 million views, was taken eight days before Mamoe died, showing how he kept his spirits high and brought smiles to those around him. Speaking to "Good Morning America," Brown said she shared the video last month because she was feeling sad at the time, thinking about her late brother. "The video came up, and it just made me feel happy, and it just reminded me that towards the end of his life, like there were these little moments that were good," she said. [Click on the title's link to view the video and read more.]Editor's note: Omar's care was provided by Hospice Austin's Christopher House. Click here (and scroll down) for a different, beautiful video story about Omar and his family.
Frailty in Medicare Advantage beneficiaries and Traditional Medicare beneficiaries
09/22/24 at 03:55 AMFrailty in Medicare Advantage beneficiaries and Traditional Medicare beneficiariesJAMA Network Open; Sandra M. Shi, MD, MPH; Brianne Olivieri-Mui, PhD, MPH; Chan Mi Park, MD, MPH; Stephanie Sison, MD, MBA; Ellen P. McCarthy, PhD, MPH; Dae H. Kim, MD, ScD; 8/24In this nationally representative cohort study of 7063 community-dwelling individuals aged 65 years and older, compared with traditional fee-for-service Medicare beneficiaries, Medicare Advantage beneficiaries had higher levels of frailty at baseline but similar levels of frailty change over 1 year. These findings suggest that enrollment in Medicare Advantage plans is not associated with altered frailty trajectories compared with Traditional Medicare, and more work is needed to better understand the health services needs of older adults with frailty.
End-of-life care demand for dementia patients set to surge, study warns
09/22/24 at 03:50 AMEnd-of-life care demand for dementia patients set to surge, study warns Jersey Evening Post, United Kingdom; by UK News; 9/16/24 [United Kingdom] The number of people living with dementia who require end-of-life care is set to “substantially increase” in the coming years, according to a study. ... Researchers said: “Previous projections of the number of people with dementia who will have palliative care needs in England and Wales were based only on the number of people who died with dementia, and did not take into account people living with dementia. Thus, it is likely that the prevalence of palliative care needs among people with dementia in England and Wales has been considerably underestimated. Our analysis shows that even if dementia incidence declines between 2018 and 2040, the number of people living with dementia in England and Wales who have palliative care needs will increase substantially by 2040, reaching levels far greater than previous estimates based on mortality data.”Editor's note: How do these projection processes in the UK compare or contrast with the USA data you use? For more immediate information about current resources:
The persistent stigma attached to dementia encourages denial
09/22/24 at 03:45 AMThe persistent stigma attached to dementia encourages denial InForum; by Carol Bradley Bursack; 9/14/24 Dear Carol: ... At age 70, I was diagnosed with mild cognitive impairment (MCI). Theoretically, that diagnosis means that I have a few more memory glitches than normal for my age. A percentage of people with MCI will develop Alzheimer’s disease, but not all. Yet, some family members treat me like I shouldn’t make decisions beyond what I want for dinner. ...Dear Al: The stigma attached to mental illness, cognitive decline, and even aging, illustrates widespread ignorance of facts. The more people like you speak up the better the future will be for others. ... For now, work on educating your family about MCI. ... Here's a start:
CMS teases new cybersecurity policies for third-party vendors
09/22/24 at 03:40 AMCMS teases new cybersecurity policies for third-party vendors Modern Healthcare; by Bridget Early; 9/13/24 The Centers for Medicare and Medicaid Services is planning oversight of third-party healthcare vendors in the wake of the Change Healthcare cyberattack, said Jonathan Blum, the agency's principal deputy administrator. Blum, who also serves as chief operating officer for CMS, said at Modern Healthcare's Leadership Symposium Thursday that the agency is working to determine what levers it can pull to ensure severe disruptions in care like those linked to the cyberattack on the UnitedHealth Group subsidiary aren’t repeated. ... Almost 133 million individuals were affected by healthcare data breaches last year, more than double the number of those affected in 2022 and a number equivalent to about 40% of the U.S. population.
Final HOPE materials released
09/22/24 at 03:35 AMFinal HOPE materials releasedNAHC email; 9/17/24Hospices will begin completing the Hospice Outcome & Patient Evaluation (HOPE) on October 1, 2025. The final HOPE item sets – HOPE Admission v1.00, HOPE Update Visit (HUV) v1.00, HOPE Discharge v1.00 and HOPE ALL Item v1.00 – and accompanying HOPE Guidance Manual v1.00 were released on September 16. These documents can be accessed from the downloads section on the Centers for Medicare & Medicaid Services (CMS) HQRP HOPE webpage.[Accessing full article may require membership login.]
What is hospice?
09/22/24 at 03:30 AMWhat is hospice?JAMA Patient Page; by Vanessa Wagner, Adam Marks; 9/11/24Hospice is a specialized model of medical care for people with terminal illness. The goal of hospice is to provide compassionate care to maximize a person’s comfort and quality of life during the natural dying process. Hospice care teams are composed of doctors, nurses, social workers, chaplains, and other individuals who work together to address the physical, emotional, social, and spiritual needs of people with a terminal illness and to support their families. This generally includes alleviating symptoms (such as pain, shortness of breath, or anxiety), establishing a comfortable and peaceful environment, and facilitating meaningful time with loved ones.Publisher's note: Written by two physicians and appearing in JAMA, this "hospice introductory piece" might be helpful for new employee orientation or community outreach.
More nonprofit hospices consolidating amid economic, regulatory pressures
09/22/24 at 03:25 AMMore nonprofit hospices consolidating amid economic, regulatory pressures Hospice News; by Jim Parker; 9/12/24 As M&A in the for-profit space continues its two-year slump, nonprofits are consolidating in rising numbers. Recent years have seen an uptick in consolidation activity among nonprofits in the hospice space. Increasingly, nonprofits are pursuing acquisitions and affiliations, as well as forming regional collaboratives. In addition, some nonprofits have also been acquired by for-profit companies. Driving this trend are reimbursement and regulatory pressures, as well as a need to compete with larger, well-capitalized for-profit entities, according to Mark Kulik, senior managing director for the M&A advisory firm The Braff Group. [Click on the title's link to continue reading this significant article.]
Honoring National Hispanic Heritage Month
09/22/24 at 03:20 AMHonoring National Hispanic Heritage Month CMS.gov - CMS Office of Minority Health Menu; for 9/15-10/15 September 15 through October 15 is National Hispanic Heritage Month, a time to honor the 63.7 million Hispanic people living in the United States. This month, the Centers for Medicare & Medicaid Services Office of Minority Health (CMS OMH) would like to raise awareness of the health disparities that impact Hispanic Americans and highlight efforts to reduce gaps in health care. Hispanic Americans are at greater risk of various health conditions due to a lack of preventive care and health insurance, as well as language barriers. In 2022, almost 28% of Hispanic adults didn’t have health insurance compared to Black (13.3%), White (7.4%), and Asian (7.1%) adults. Resources:
Breaking the barriers in information sharing: Changing the discussion from legal risk to C-suite opportunity
09/22/24 at 03:15 AMBreaking the barriers in information sharing: Changing the discussion from legal risk to C-suite opportunity N2K; by Rick Howard; 9/16/24 In the evolving landscape of cybersecurity, sharing information among institutions is critical to bolster defenses against increasingly sophisticated threats. Cooperation between organizations can strengthen everyone’s defenses, but such an approach requires openness and transparency, something that many organizations have been reluctant to do. ... The C-suite – comprising top executives such as the CEO, CFO, CIO, CISO, and others – plays a critical role in shaping an organization's approach to cybersecurity. In the context of information sharing, the C-suite's role is pivotal in driving the cultural and operational changes necessary to transition from a risk-averse stance to one that recognizes the strategic value of collaboration and information exchange. One of the most successful initiatives that C-suite leaders can champion is participation in industry-specific Information Sharing and Analysis Centers (ISACs). ... [Following discussions include:] The business case for information sharing ... Enhanced risk management ... Cost savings and resource efficiency ... Compliance and legal benefits ... Innovation ... Professional Development ... Challenges to information sharing ... Legal and regulatory complexities ... Risk of exposure and misuse ... Trust issues among organizations ... Technical barriers ... Cultural and organizational obstacles ... Sharing information ... Categorize information by sensitivity ... Assess recipients ... Vet the data ... Monitoring and oversight ... Engaging in industry-wide collaboration ... Real world examples - Health-ISAC and the faulty CrowdStrike update ... The path forward ... [Click on the title's link for the full article and a whitepaper.]
Simon Boas’ ‘inspirational’ book A Beginner’s Guide to Dying is published posthumously
09/22/24 at 03:10 AMSimon Boas’ ‘inspirational’ book A Beginner’s Guide to Dying is published posthumously Jersey Evening Post; by Rod McLoughlin; 9/13/24 Friends and family of the late Simon Boas gathered ... to celebrate the posthumous publication of his book, A Beginner’s Guide to Dying. The former Jersey Overseas Aid chief executive – who died from throat cancer on 15 July at the age of 47 – spent his last months developing into a book ideas first explored in articles for the Jersey Evening Post. Described by the Daily Mail as “an inspirational paean to the joy of life”, Mr Boas’ words reached a huge audience after they were reprinted in the national press and broadcast on the BBC’s Today programme. A proportion of the proceeds are being donated to the African Palliative Care Association and the International Children’s Palliative Care Network. Mr Boas’ inspiring writings in the face of his terminal diagnosis saw him awarded the Bailiff’s Silver Medal in May. Shortly before his death, he also received a personal letter from the King and Queen ahead of their visit to Jersey.Editor's note: This follows up the inspirational story we posted on July 8, 2024, 'I'm as happy as I've been in my life,' says aid worker Simon Boas as he faces death. This book is available on Amazon in book, Kindle, and Audible formats.
Bayada Home Health Care settled nurses’ wages class action lawsuit for $13.5 million
09/22/24 at 03:05 AMBayada Home Health Care settled nurses’ wages class action lawsuit for $13.5 million Head Topics - Daily Botique; 9/13/24 The settlement, if approved by a judge, will cover nearly 11,000 Bayada nurses in Pennsylvania. Bayada Home Health Care Inc., one of the nation’s largest home care providers, agreed to settle a class-action lawsuit in Philadelphia alleging the company failed to pay nurses for time spent updating the incoming nurse or caregiver on a patient’s condition and for time spent in mandatory training sessions the $13.5 million Philadelphia Court of Common Pleas settlement.Editor's note: Additional information is behind a paywall at the Philadelphia Inquirer.
Today's Encouragement
09/22/24 at 03:00 AMA fool is known by his speech; and a wise man by silence. ~Pythagoras [Greek philosopher and yes, the Pythagorean theorem guy!]
Sunday newsletters
09/22/24 at 03:00 AMSunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!
The 9 college majors that lead to the most fulfilling careers ... [Music therapy]
09/22/24 at 03:00 AMThe 9 college majors that lead to the most fulfilling careers ... [Music therapy]NBC 7 San Diego, CA; by Kamaron McNair; 9/14/24 If you want your degree to help you land a fulfilling job, consider studying music therapy. The medical and therapeutic fields are among the college majors helping graduates get jobs that make the world a better place, according to graduates surveyed in a recent Payscale report.24/7 San Diego news stream: Watch NBC 7 free wherever you are Alumni with bachelor's degrees in music therapy are most likely to do this kind of fulfilling work, with 95% of degree-holders saying their work makes the world a better place, Payscale finds. Music therapy programs cover coursework in music, music therapy, science and psychology, according to the American Music Therapy Association. ... Music therapists may work in traditional settings, offering services to clients working through physical disabilities or mental health issues. People in hospice care, substance abuse programs and cancer treatment centers have also benefited from music therapist visits, according to the AMTA.Editor's note: Click here for facts and descriptions about "Music Therapy in Hospice Care," by the American Music Therapy Association (AMTA). To recruit a certified music therapist for hospice (or other setting), visit AMTA's Job Hotline.
As families searched, a Texas medical school cut up their loved ones
09/22/24 at 03:00 AMAs families searched, a Texas medical school cut up their loved ones NBC News, Dallas, TX; by Mike Hixenbaugh, John Schuppe, Susan Carroll, Catherine Allen, Bryan Gallion, Liz Kreutz and Nigel Chiwaya; 9/16/24 ... In the name of scientific advancement, clinical education and fiscal expediency, the bodies of the destitute in the Dallas-Fort Worth region have been routinely collected from hospital beds, nursing homes and homeless encampments and used for training or research without their consent — and often without the approval of any survivors, an NBC News investigation found. ... For months as NBC News reported this article, Health Science Center officials defended their practices, arguing that using unclaimed bodies was essential for training future doctors. But on Friday, after reporters shared detailed findings of this investigation, the center announced it was immediately suspending its body donation program and firing the officials who led it. The center said it was also hiring a consulting firm to investigate the program’s operations.Publisher's note: And a "dishonorable mention" story we ran this week and that has been featured on national news. This story provoked me to explore more about what happens after a person dies - particularly the "unbefriended", those without family or friends. How does your hospice ensure the honorable and respectful care for people after they die when there are no family or friends to take such responsibility?
Today's Encouragement
09/21/24 at 03:55 AMYou cannot do a kindness too soon, for you never know how soon it will be too late. ~Ralph Waldo Emerson
Using AI and social media to understand health disparities for transgender cancer care
09/21/24 at 03:40 AMUsing AI and social media to understand health disparities for transgender cancer careJAMA Network Open; Augustine Annan, PhD; Yeran Li, PhD; Jingcheng Du, PhD; Yezhou Sun, MS; A. I. Asante-Facey, MD; Xiaoyan Wang, PhD; Matthew Monberg, PhD; 8/24Transgender individuals experience lower health care use and higher health care discrimination rates. This qualitative study revealed 3 barriers in transgender cancer care: lack of awareness, access issues, and clinical challenges. The consistent reporting of clinical challenges indicates the need for tailored medical guidelines and gender-affirming support systems. Addressing these disparities requires enhanced clinician education, evidence-based guidelines, policy reforms, and inclusive health coverage. Despite potential biases and limitations in the representativeness of social media data, this study may offer valuable insights to guide future initiatives toward achieving equitable health care for transgender individuals.
Hidden From sight - From the closet to the paywall: A rapid evaluation of restricted and monetized access to LGBTQ+ inclusive palliative, end-of-life, and bereavement care research
09/21/24 at 03:35 AMHidden From sight - From the closet to the paywall: A rapid evaluation of restricted and monetized access to LGBTQ+ inclusive palliative, end-of-life, and bereavement care researchJournal of Pain and Symptom Management; by William E Rosa, Donna Wakefield, Hannah M Scott, Debbie Braybrook, Richard Harding, Katherine Bristowe; 9/24Health and social care professionals and policy makers rely on access to high quality evidence to inform their work. Failing to make articles related to the needs of LGBTQ+ people and populations OA risks further marginalisation and worsened inequities. Innovative journal policies and funding are needed to enable access, particularly for research that foregrounds the needs of marginalised communities. Where articles are currently behind paywalls, there is a need for accessible summaries or policy briefs to inform inclusive policy and practice.
Racial differences in palliative care and hospice among adults with chronic obstructive pulmonary disease
09/21/24 at 03:30 AMRacial differences in palliative care and hospice among adults with chronic obstructive pulmonary diseaseRespiratory Medicine; by Natalia Smirnova, Sarah H Cross, Amanda Light, Dio Kavalieratos; 9/24Individuals with COPD often experience frequent hospitalizations and high-intensity care at the end-of-life (EOL). Although people with COPD experience a higher symptom burden and worse functional status than patients with other serious illness such as cancer, people with COPD are less likely to receive specialty palliative care (PC) or hospice and more likely to die in the hospital or the intensive care unit (ICU). Furthermore, evidence of inequities within COPD exist. For example, Black individuals and those with lower socioeconomic status are likelier to experience COPD exacerbations and have worse quality of life than White individuals and those with higher socioeconomic status.
Racial disparities in palliative care at end-of-life in children with advanced heart disease in the South
09/21/24 at 03:25 AMRacial disparities in palliative care at end-of-life in children with advanced heart disease in the SouthJournal of Pediatrics; by Harrison Turner, Elizabeth S Davis, Isaac Martinez, Shambihavi Anshumani, Santiago Boresino, Susan Buckingham, Caroline Caudill, Chen Dai, Erika Mendoza, Katie M Moynihan, Lucas A Puttock, Raba Tefera, Smita Bhatia, Emily E Johnston; 8/24We performed a retrospective study from electronic health records of children (≤21 years at death) who died with advanced heart disease at a single institution between 2012 and 2019 (n=128). The main outcome was specialty pediatric palliative care (SPPC) consult; we assessed clinical and sociodemographic factors associated with SPPC. The median age at death was 6 months (IQR=1-25 months) with 80 (63%) ≤1 year... Twenty-nine children (22%) received SPPC. Children ≤1 year at time of death and Black children were less likely to receive SPPC. SPPC was associated with death while receiving comfort-focused care, do not resuscitate orders, and hospice enrollment (no children without SPPC care were enrolled in hospice) but not medically intense EOL care (ICU admission, mechanical ventilation, hemodialysis, or CPR) or death outside the ICU. Children dying with advanced heart disease in Alabama did not have routine SPPC involvement; infants and Black children had lower odds of SPPC. SPPC was associated with more comfort-focused care.
Racial disparities in cancer stage at diagnosis and survival for adolescents and young adults
09/21/24 at 03:20 AMRacial disparities in cancer stage at diagnosis and survival for adolescents and young adultsJAMA Network Open; Kekoa Taparra, MD, PhD; Kaeo Kekumano, BS; Ryan Benavente, BS; Luke Roberto, BS; Megan Gimmen, BS; Ryan Shontell, PhD; Henrietta Cakobau; Neha Deo, MD; Connor J. Kinslow, MD; Allison Betof Warner, MD, PhD; Curtiland Deville, MD; Jaimie Z. Shing, PhD, MPH; Jacqueline B. Vo, PhD, MPH, RN; Manali I. Patel, MD, MPH; Erqi Pollom, MD, MS; 8/24This cohort study of AYA [adolescent and young adult] patients suggests that stage at diagnosis and survival varied across races for the 10 deadliest AYA cancers. ... the risk of late-stage diagnosis was significantly higher for Asian, Black, and Native Hawaiian or Other Pacific Islander patients compared with White patients. However, compared with White patients, the risk of death was significantly higher for American Indian or Alaska Native, Black, and Native Hawaiian or Other Pacific Islander patients but lower for Asian patients. These results support the need for tailored interventions and informed public policy to achieve cancer care equity for all races.
Research involving the recently deceased: ethics questions that must be answered
09/21/24 at 03:15 AMResearch involving the recently deceased: ethics questions that must be answeredJournal of Medical Ethics; by Brendan Parent, Olivia S Kates, Wadih Arap, Arthur Caplan, Brian Childs, Neal W Dickert, Mary Homan, Kathy Kinlaw, Ayannah Lang, Stephen Latham, Macey L Levan, Robert D Truog, Adam Webb, Paul Root Wolpe, Rebecca D Pentz; 8/24Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria-or 'research involving the recently deceased'-can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor's legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.
Caregiver and employee experience among big hospices - ranking of the largest US hospices by three quality indicators
09/21/24 at 03:10 AMCaregiver and employee experience among big hospices-ranking of the largest US hospices by three quality indicatorsAmerican Journal of Hospice & Palliative Care; by Jason Hotchkiss, Emily Ridderman, Brendan Hotchkiss; 9/24Caregiver and employees had better experiences with non-profits than for-profits. Anger and frustration was expressed toward large, for-profit providers more focused on admissions, profiteering, and paying dividends than actual care. The CAHPS appears to draw more satisfied caregivers. Whereas, online reviewing provides open-ended, real-time voicing of care quality concerns. Even with distinct methods, CAHPS survey and review sentiment analysis converge on caregiver satisfaction, yet CAHPS paints a much rosier picture of hospice quality than online reviews.