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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. Teleios Collaborative Network podcasts review Hospice & Palliative Care Today monthly content - click here for the current November podcast and here for all TCN Talks podcasts.
Saturday newsletters focus on headlines and research - enjoy!
Transition to hospice: how it impacts the mental health of caregivers of persons with dementia
Alzheimer's & Dementia; by Oonjee Oh, Debra Parker Oliver, Karla Washington, George Demiris; 2024
In this study, we aimed to examine caregivers’ mental health indicators and their correlation structure based on the timing of hospice transition... In the context of dementia care, our results highlight that caregivers who just entered hospice are undergoing a challenging transition that often finds them in a mentally vulnerable position. To develop and implement effective strategies for caregivers of persons with dementia, we need to understand the needs and vulnerabilities of caregivers during hospice transition and identify the best timing for the delivery of supportive tools.
“I aim to fulfill my promise”: Dementia caregiving from the perspective of spouses and partners
Journal of Applied Gerontology; Haley M. Shiff, Theresa A. Allison, Madina Halim, Kenneth E. Covinsky, Alexander K. Smith, Deborah E. Barnes, Jennie M. Gubner, Kara Zamora; 1/25
In the United States, spouses provide 17% of in-home care for people living with dementia. We found common features underlying the care provided by spouses/partners, including challenges and motivators guided by notions of loyalty and commitment. As cognition and function declined, care partners found the relationship increasingly difficult. They shared the feeling of being stuck as well as the loss of identity and freedom. This finding follows what Westrelin et al. (2024) describe in their study on spousal caregivers of partners living with dementia, in which spouses perceived changes not only in their partner but also in themselves and oscillated between their identity as a caregiver and as a spouse, highlighting the dynamic nature of caregiver identity construction within the context of caring for a partner living with dementia.
Effective solutions for caregivers of older adults: A review of systematic reviews
Journal of Applied Gerontology; Molly McHugh, Ellen Munsterman, Hannah Cho; 1/25
This umbrella review aims to describe caregiver interventions tested across populations of informal caregivers of older adults and to examine the effect of caregiver interventions on depression, burden, and quality of life across intervention types and care-recipient populations. Most commonly, interventions focused on improving outcomes for caregivers of older adults with dementia. Among the included reviews, caregiver depression was most likely to be reduced by caregiver interventions, and cognitive behavioral therapy (CBT) and mindfulness-based interventions (MBI) were most effective. The use of information and communication technologies to deliver caregiver interventions is increasingly common. Standardization of intervention classifications and transparent reports of intervention delivery details will strengthen research in this field.
Medicare to Veterans Affairs cost shifting—A challenging conundrum
JAMA Health Forum; Kenneth W. Kizer, MD, MPH, DCM; Said Ibrahim, MD, MPH, MBA; 12/24
In this issue, Burke et al highlight how costs previously paid by Medicare for VA-Medicare dual eligible enrollees are now being paid by the VA under the VCCP [Veterans Community Care Program]. Today, there is reason to be concerned whether VA health care will be adequately funded because of the rapidly rising VCCP expenditures (driven in part by Medicare to VA cost shifting) and the impact of caring for an additional 740,000 enrollees who have entered the system in the past 2 years. This has created a $12 billion medical care budget shortfall for FY 2024. The substantial budgetary tumult that has resulted from these dynamics is adversely impacting the front lines of care delivery at individual VA facilities, leading to delays in hiring caregivers and impeding access to VA care and timely care delivery, as well as greatly straining the traditional roles of VA staff and clinicians trying to manage the challenging cross-system referral processes. The intertwined issues of Medicare to VA cost shifting and the rising costs of the VCCP present a challenging policy and programmatic conundrum.
Sociodemographic disparities in the use of hospice by U.S. nursing home residents: A systematic review
American Journal of Hospice and Palliative Medicine; Christine E. DeForge, PhD, RN, CCRN; Hsin S. Ma, MPP, MA; Andrew W. Dick, PhD; Patricia W. Stone, PhD, RN, FAAN, CIC; Gregory N. Orewa, PhD; Lara Dhingra, PhD; Russell Portenoy, MD; Denise D. Quigley, PhD, MA; 1/25
Hospice can improve end-of-life (EOL) outcomes in U.S. nursing homes (NHs). However, only one-third of eligible residents enroll, and substantial variation exists within and across NHs related to resident-, NH-, or community-level factors. Studies adjusting for resident-, NH-, and community-level factors found lower hospice use among male residents, Black/Non-White residents, and residents of rural NHs, with mixed results by payor and ownership. Results were mixed for hospice referral and length-of-stay. These findings suggest complex influences on NH hospice use.
Advance care planning among diverse U.S. older adults with varied cognition levels
Alzheimer's & Dementia; by Zahra Rahemi, Swann Arp Adams; 1/25
Older adults from minority groups often experience elevated rates of chronic diseases and cognitive impairment, coupled with lower rates of engagement in advance care planning (ACP) and comfort care as they approach end of life... Our study revealed that individuals facing cognitive impairments exhibited lower rates of engagement in ACP. Notably, among the variables examined, race, ethnicity, rural residence, education, and age emerged as significant predictors of ACP in a national sample of older adults in the U.S. These findings underscore the importance of incorporating these sociodemographic factors into the design of interventional studies aimed at enhancing ACP and mitigating disparities.
Preferred and actual location of death in adolescents and young adults with cancer
JAMA Network Open; by Oreofe O. Odejide, Colin Cernik, Lauren Fisher, Lanfang Xu, Cecile A. Laurent, Nancy Cannizzaro, Julie Munneke, Robert M. Cooper, Joshua R. Lakin, Corey M. Schwartz, Mallory Casperson, Andrea Altschuler, Lori Wiener, Lawrence Kushi, Chun R. Chao, Jennifer W. Mack; 1/14/25
In this cohort study of 1929 adolescent and young adult (AYA) decedents, 1226 (63.6%) had a documented discussion about their preferred location of death, with home being most frequently desired. Among these, 224 of 317 (70.7%) who wanted to die at home were able to do so, as were 164 of 172 (95.3%) who preferred a hospital death. The fact that over a quarter of AYA patients with cancer who preferred to die at home were unable to do so suggests a need for effective interventions to improve goal-concordant end-of-life care for AYA patients with cancer.
Empowering Patient Choice: The Essential Need for a Voluntary Advance Directive Framework in Healthcare
Alzheimer's and Dementia; Stephanie Frilling; 1/25
A Medicare Voluntary Advance Directive Framework (Framework) would enable the creation, storage, and sharing of advance directive documents, ensuring end-of-life care appropriately honors the individual and their care wishes, while supporting healthcare teams and family members in making care decisions for their patients and loved ones. With Medicare enrollment reaching over 65 million beneficiaries in 2023, and Alzheimer's becoming one of the most expensive conditions - CMS policy makers have a growing responsibility to improve care quality at end-of-life.
Development and outcomes of a provider-driven, online continuing education program on integrative palliative care: Randomized controlled trial
Global Advances in Integrative Medicine and Health; William Collinge, PhD, MPH; Leila Kozak, PhD; Scott Mist, PhD, MAcOM; Robert Soltysik, MS; 1/25
While conventional medicine excels in emergency and acute care, complementary therapies are increasingly being integrated into efforts for symptom management and quality of life (QoL) in hospital, hospice and nursing home environments. The term “complementary” denotes a cooperative or collaborative relationship between conventional and unconventional modalities, and when such integration takes place, the terms “complementary” and “integrative” are commonly used interchangeably. Hospices have been early adaptors of such therapies with surveys in various states showing between 60-90% of hospices offering these modalities. This provider-driven CE/CME program led to significant positive changes in practitioners’ self-efficacy and implementation of integrative care practices in PC settings. The results indicate that CE/CME can have measurable impacts that benefit providers and may potentially impact patients, families and the culture of care.
Whom should we regard as responsible for health record inaccuracies that hinder population-based fact finding?
AMA Journal of Ethics; Kathleen M. Akgün, MD, MS; Shelli L. Feder, PhD, APRN; 1/25
EHR [electronic health record] use has revolutionized health information collection and analysis. This growth has led to opportunities to generate important reports about the health of hundreds of millions of people practically in real time. Steadfast commitment to high-quality data collection and reporting is necessary for all parties along the pathway of data generation: from EHR developers, programmers, and vendors to patients, clinicians, and epidemiologists. Pulling back the curtain on how each of these groups generate and interact with EHR data is imperative to assure measurement of accurate population-level health outcomes.
Current use and evaluation of artificial intelligence and predictive models in US hospitals
Health Affairs; by Paige Nong, Julia Adler-Milstein, Nate C. Apathy, A. Jay Holmgren, Jordan Everson; 1/25
Effective evaluation and governance of predictive models used in health care, particularly those driven by artificial intelligence (AI) and machine learning, are needed to ensure that models are fair, appropriate, valid, effective, and safe, or FAVES. We analyzed data from the 2023 American Hospital Association Annual Survey Information Technology Supplement to identify how AI and predictive models are used and evaluated for accuracy and bias in hospitals. Hospitals use AI and predictive models to predict health trajectories or risks for inpatients, identify high-risk outpatients to inform follow-up care, monitor health, recommend treatments, simplify or automate billing procedures, and facilitate scheduling. We found that 65 percent of US hospitals used predictive models, and 79 percent of those used models from their electronic health record developer.
Publisher's note: It would be interesting if hospices collected and reported similar information.
[Canada] Qualitative bereavement experiences and support in community-dwelling older adults: A scoping review
Omega-Journal of Death and Dying; Samantha Teichman, Barbara A. Mitchell, Indira Riadi, Habib Chaudhury, Albert Banerjee, William Odom; 12/24
This scoping review examines qualitative studies on bereavement experiences and support mechanisms for community-dwelling older adults. This area of research is especially timely given rapid population aging and the interplay of heightened vulnerability, cumulative losses, shrinking support systems, and the critical need for bereavement support. Such support not only acts as a preventative health measure but can also serve as a catalyst for fostering meaning-making and navigating grief in later life. Through a scoping search and synthesis of relevant qualitative studies ..., the findings reveal four key themes: the impact of grief on wellbeing, grief perceived as an individual issue, challenges in seeking and receiving support, and positive support experiences and transformations. This discussion contributes to developing targeted bereavement support strategies for community-dwelling older adults.
[The Netherlands] Family concerns in organ donor conversations: A qualitative embedded multiple-case study
Critical Care; Sanne P C van Oosterhout, Anneke G van der Niet, Wilson F Abdo, Marianne Boenink, Jelle L P van Gurp, Gert Olthuis; 12/24
Listening and responding to family concerns in organ and tissue donation is generally considered important, but has never been researched in real time. [This study found that] concerns clustered around six topics: 1) Life-event of a relative's death, 2) Dying well, 3) Tensions and fears about donation, 4) Experiences of time, 5) Procedural clarity, and 6) Involving (non-)present family. When concerns were highly charged with emotion, the clinicians' responses were less frequently attuned to families' needs. The identified concerns and the distinction between clearly and less clearly articulated concerns may prove valuable for clinicians to improve family support. We advise clinicians to engage with a curious, probing attitude to enhance the dialogue around concerns, elaborate on less clearly articulated concerns and identify the informational needs of the family.
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.