Literature Review

A scoping review of dementia interventions in home-based primary careJournal of the American Medical Directors Association; by Jeffrey D. Weiner BA, Bruce Leff MD, Christine S. Ritchie MD, MSPH; 6/24Home-based primary care (HBPC) provides interdisciplinary, longitudinal, comprehensive care at home to homebound older adults. The prevalence of dementia among HBPC recipients is approximately 50%... Despite high prevalence of dementia among homebound older adults receiving HBPC, there are a dearth of studies on HBPC-specific dementia interventions. Future studies should consider adapting and testing interventions found to be effective in other settings to HBPC.

Nursing Home Star Ratings and end-of-life care quality: Lessons learned from the Veterans Health AdministrationJournal of the American Medical Directors Association; by Joan Carpenter, Daniel Kinder, Dawn Smith, Mary Ersek, Melissa Wachterman, Joshua Thorpe, Donald R Sullivan, Jennifer Bailey, Scott Shreve, Ann Kutney-Lee; 6/24Our findings suggest that the current [VA nursing homes, known as Community Living Centers (CLCs)] star rating system is not sufficient to assess the quality of EOL care. [The VA's Bereaved Family Survey (BFS)] scores, or a comparative EOL quality of care measure, should be integrated into CLC quality rating systems.Publisher's Note: If the VA is integrating an EOL quality measure into their NF Star Rating, should Medicare?

Palliative care for patients with cancer: ASCO guideline updateJournal of Clinical Oncology; by Justin J Sanders, Sarah Temin, Arun Ghoshal, Erin R Alesi, Zipporah Vunoro Ali, Cynthia Chauhan, James F Cleary, Andrew S Epstein, Janice I Firn, Joshua A Jones, Mark R Litzow, Debra Lundquist, Mabel Alejandra Mardones, Ryan David Nipp, Michael W Rabow, William E Rosa, Camilla Zimmermann, Betty R Ferrell; 7/24Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions... The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care. Additional information is available at www.asco.org/supportive-careguidelines. 

End-of-life care needs in cancer patients: a qualitative study of patient and family experiences BMC Palliative Care; by Mario López-Salas, Antonio Yanes-Roldán, Ana Fernández, Ainhoa Marín, Ana I Martínez, Ana Monroy, José M Navarro, Marta Pino, Raquel Gómez, Saray Rodríguez, Sergio Garrido, Sonia Cousillas, Tatiana Navas, Víctor Lapeña, Belén Fernández; 6/21/24  Results: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4) needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.

Patient experiences of specialty palliative care in the perioperative period for cancer surgery Journal of Pain and Symptom Management; by Laura M Holdsworth, Rachel Siden, Anna Sophia Lessios, Mae Verano, Elizabeth Rickerson, Bridget Fahy, Fabian M Johnston, Brittany Waterman, Rebecca Aslakson; 6/19/24 online ahead of print  Context: Though patients undergoing treatment for upper gastrointestinal (GI) cancers frequently experience a range of sequelae and disease recurrence, patients often do not receive specialty palliative care soon after diagnosis and it is unknown in what ways they may benefit.  Results: We found five themes that characterized patient experiences and perceptions of specialty palliative care. Patients typically had limited prior awareness of palliative care (theme 1), but during the study, came to understand it as a "talking" intervention (theme 2). Patients whose concerns aligned with palliative care described it as being impactful on their care (theme 3). However, most patients expressed a focus on cure from their cancer and less perceived relevance for integration of palliative care (theme 4). Integrating specialist palliative care practitioners with surgical teams made it difficult for some patients to identify how palliative care practitioners differed from other members of their care team (theme 5).

The two phases of hospice—Declining Phase and Terminal PhaseJournal of Palliative Medicine; by Roy Zagieboylo, MD; 6/24I propose that hospice care should be identified as Declining Phase or Terminal Phase hospice care. ... In the Declining Phase, patients will usually have a gradual deterioration in function requiring more and more care. ... As many patients progress and their bodies fail, they may enter the Terminal Phase of hospice care. This phase is identified by the patient and family and is that time when the quality of life is so poor, there is no goal to increase the number of days alive. ... If, upon referral to hospice, a doctor was routinely asked “Is this a Declining Phase or Terminal Phase referral?” it would encourage discussion, education, and possibly a better understanding of the full scope of hospice care. If the nomenclature became widespread, it would also help patients and families better understand, appreciate, and accept earlier hospice referrals.

The presence of implantable cardioverter defibrillators is rarely addressed during code status changeAmerican Journal of Hospice and Palliative Medicine; by Namratha Seetharam Meda, MBBS, Watipa Makhumalo, MD, Hunter Groninger, MD, Clint Pettit, MD; 6/24Implantable Cardioverter Defibrillators (ICDs) are used to prevent sudden cardiac death, but they may provide unwanted shocks during end-of-life care. We aimed to study the frequency at which Do Not Resuscitate (DNR) discussions address ICD preferences in high-risk patients. ... ICD discussions were rarely documented in our high-risk population, highlighting a potential need for better in-chart visibility of ICDs and for focused education of clinicians who care for these patients at end of life.

Telemedicine and e-Health: May issue Telemedicine and e-Health; Editor-in-Chief Charles R. Doearn, MBA, FATA and Executive Editor Karen Rheuban, MD, FATA; published monthly The leading peer-reviewed journal for cutting-edge telemedicine applications for achieving optimal patient care and outcomes. [Relevant titles include the following. These are included in this current May's print edition, many were previously published "online ahead of print."]

Hospital nurse staffing variation and Covid-19 deaths: A cross-sectional studyInternational Journal of Nursing Studies; by Karen B. Lasater, Matthew D. McHugh, Linda H. Aiken; 6/24During the Covid-19 pandemic, Covid-19 mortality varied depending on the hospital where patients were admitted, but it is unknown what aspects of hospitals were important for mitigating preventable deaths. Patients with Covid-19 admitted to hospitals with adequate numbers of RNs caring for patients, a workforce rich in BSN-qualified RNs, and high-quality nurse work environments (both prior to and during the Covid-19 pandemic) were more likely to survive the hospitalization. Bolstering these hospital nursing resources during ordinary times is necessary to ensure better patient outcomes and emergency-preparedness of hospitals for future public health emergencies.Publisher's Note: Also see related KFF Health News article Chronically Understaffed US Hospitals Saw More Covid Deaths, Data Indicate.

Adapting the Serious Illness Conversation Guide for dementia careAmerican Journal of Hospice and Palliative Care; by Charlotte E Berry, Sophie H Montgomery, Robert Santulli, Amelia Cullinan; 8/24Advance care planning (ACP), a critical component of quality dementia care, is underutilized due to lack of clinician comfort and the challenging nature of ACP in this context. The Serious Illness Conversation Guide (SICG) is a well-validated clinician-facing tool, developed with patient and clinician input, to facilitate ACP. The aim of this project was to adapt the SICG for dementia for the first time to promote high-quality ACP.

Parental history of memory impairment and β-amyloid in cognitively unimpaired older adults JAMA Neurology; by Mabel Seto, PhD; Timothy J. Hohman, PhD; Elizabeth C. Mormino, PhD; Kathryn V. Papp, PhD; Rebecca E. Amariglio, PhD; Dorene M. Rentz, PsyD; Keith A. Johnson, MD; Aaron P. Schultz, PhD; Reisa A. Sperling, MD; Rachel F. Buckley, PhD; Hyun-Sik Yang, MD; 6/17/24 Objective: To characterize maternal vs paternal history of memory impairment in terms of brain Aβ-positron emission tomography (Aβ-PET) and baseline cognition among a large sample of cognitively unimpaired older adults. Conclusions and Relevance  In this study, maternal history (at any age) and paternal history of early-onset memory impairment were associated with Aβ burden among asymptomatic older individuals. Sex-specific parental history may help inform clinicians on likelihood of Aβ burden in offspring and help identify high-risk individuals at the earliest stages of disease for prevention.Editor's Note: We posted a descriptive, less data-oriented article that was about this research on 6/21/24, "Alzheimer’s history on maternal side linked to higher disease risk, study finds"

Understanding adult hospices caring for children in California, 2018-2021Heather A. Davis, PhD1, Meaghann S. Weaver, PhD, MD, MPH2,3,Christy Torkildson, PhD, RN, PHN, FPCN, HEC-C4,5, andLisa C. Lindley, PhD, RN, FPCN, FAAN6AbstractIn areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children.Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices inCalifornia that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies andHospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects ofhospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristicswere measured via the California utilization data using descriptive statistics. Service area was measured via latitudeand longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the studyhad distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities withpredominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for childrenbetween 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staffcomfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into thecharacteristics of adult hospices in California providing care for children and has important policy implications.

Narrating final memories from spousal loss: The role of place and quality of deathAmerican Journal of Hospice and Palliative Medicine; by Emily L Mroz, Susan Bluck; 8/24Personal memories of the death of a spouse can guide bereavement adjustment. Place of death and quality of death are end-of-life factors that are likely to influence death experiences and formation of subsequent personal memories. The current study employs narrative content-analysis to examine how place and quality of death relate to affective sequences present in older adults' final memories from the death of their spouse. ... Final memories are carried with the bereaved long after their loss. Positive final memories appear to stem from witnessing a comfortable, medically appropriate death outside of a hospital setting. End-of-life 'that is' between care and aligned with patients' values for place and treatment may be critical for spouses' formation of constructive final memories and bereavement adjustment.Editor's Note: Per Yale press release: Emily Mroz, PhD, postdoctoral fellow in the Yale Department of Internal Medicine’s Section of Geriatrics, recently received the Association for Death Education and Counseling (ADEC) Edie Stark-Shirley Scott Early Achievement Award. The honor is presented annually to a woman in the initial years of a career in thanatology—the study of death, dying, and bereavement—who has distinguished herself through activity in scholarship, service, research, clinical practice, or social action.