Literature Review

Quality indicators and patient outcome measures for palliative care in cancer patients: A systematic reviewEcancermedicalscience; Chase Peng Yun Ng, Moira Hegyi, Grant Lewison, Tania Pastrana, Eve Namisango, James Cleary, Barbara Hasties, Eric Kabisa, Helena Musau, Kathryn Spangenberg, Paola Ruiz, Zipporah Ali, Mertixell Mallafre-Larrosa, Alfredo Polo, Julie Torode, Ajay Aggarwal, Richard Sullivan, Mevhibe Hocaoglu; 6/25With the exponential rise in global cancer incidence, the surge in demand for palliative care has outstripped capacity, limiting patients' access to quality and holistic palliative care, especially in low- and middle-income countries. There is an overall lack of standardisation of QIs [quality indicators] and POMs [patient outcome measure], as well as variability in evidence of palliative care research. We recommend that stakeholders collaborate to develop a standardised repository of metrics for monitoring and evaluating palliative care services at both individual and system levels, with a particular focus on structural and process indicators. Incorporating validated, patient-centred measures and selecting key items as quality indicators will enable meaningful tracking of changes, guiding resource allocation and driving improvements in patient-centred care.

End-of-life symptoms in persons dying with advanced dementia in the community setting: Findings from IN-PEACEJournal of Pain and Symptom Management; by Kurt Kroenke, Sujuan Gao, Susan E. Hickman, Alexia M. Torke, Nina M. Johnson, Amy Pemberton, Andrea Vrobel, Minmin Pan, Laura R. Holtz, Greg A. Sachs; 8/25This article characterizes symptom burden in persons with advanced dementia dying in the community who were enrolled in a 2-year trial of home-based palliative care. Symptoms did not generally worsen from enrollment to time of death and symptom severity was similar to persons with dementia dying in a nursing home.

Palliative care education in pediatric cardiology fellowships: A survey of program directorsPediatric Cardiology; Lesje DeRose, Sarah Godfrey, Shabnam Peyvandi, Nicole M. Cresalia, Jill M. Steiner, Emily Morell; 6/25 Our survey demonstrated a wide range of PC [palliative care] educational practices among categorical pediatric cardiology fellowship programs. While most programs provided some form of PC education to their fellows, the amount and modality varied widely between programs, from very minimal PC exposure to required core PC rotations. Almost half of the participating PDs [program directors] reported dissatisfaction with the current amount of PC education in their fellowship programs. Programs such as VitalTalk (www.vitaltalk.org) and other (both in-person or virtual) modules have been utilized in other training environments with improvement in trainee comfort in PC topics, including CardioTalk for adult cardiology trainees. Didactic-based curricula in PC topics, such as mental health and ethics, have also been shown to help providers gain confidence in PC domains.

Health economic analysis of an all-virtual, at-home acute care modelJAMA Network Open; Brad Spellberg, MD; Christopher Lynch, MD; Hal F. Yee, MD, PhD; Josh Banerjee, MD; 6/25Hospital-at-home care models send staff, durable medical equipment (DME), and therapeutics (eg, intravenous infusions) to patients’ homes to provide care. In the US, Medicare requires in-person evaluations at least twice daily to receive payment for hospital-at-home services. In the UK National Health Service, virtual wards at home are increasingly being used in lieu of inpatient care. This economic evaluation of ... patients receiving all-virtual, at-home acute care ... found that the virtual program was cost-saving (due to avoided variable hospital costs) only for unfunded patients or patients with Medicaid, but was cost-losing for Medicare and commercially insured patients due to substantial lost inpatient revenue. These findings suggest that current payer rates for inpatient care financially disincentivize development and implementation of novel acute, at-home care models, but a simple reimbursement schema could enable net savings to both hospitals and payers.

Impact of spirituality in Christians with serious illness - A phenomenological studyAmerican Journal of Hospice and Pallaitive Care; Judy Lentz; 6/25Seeking support within the faith community is frequently noted in Christians with serious illness. Research interviews captured four major structures with accompanying constituent parts [including] ... sovereignty of God with unpredictability, relationship with God especially through prayer, illness-related loss with accompanying guilt for the subsequent burden created for the caregivers, and gratitude for the love and support shown to the participant by loved ones and others. The impact of the structures and constituent parts of spirituality identified by the Christians who participated in this study demonstrates the value and significance of the faith-based spiritual support received during their illness.

Hospice and palliative care experiences as expressed on the r/hospice and r/palliative subredditsAmerican Journal of Hospice & Palliative Medicine; Riley Shin, BSA; Ashley Shin, MD; Elizabeth K. Nugent, MD, MS; 6/25 Reddit, an anonymous online community forum, provides space for sharing medical information, seeking emotional support, and facilitating open communication. This qualitative study examined the most popular questions on the r/hospice and r/palliative communities on Reddit. Seven primary themes emerged from question and advice-seeking r/hospice comments: (1) the dying process (24%), (2) coping and emotional support for patients and caregivers (22%), (3) logistics of hospice and palliative care (22%), (4) medication treatments and side effects (13%), (5) negative hospice experiences (10%), (6) support for hospice providers (7%), and (7) other less related material (2%). Assessment of posts on the r/hospice and r/palliative subreddits revealed gaps in communication between patients, caregivers, and healthcare providers in several important areas, most importantly in demystifying the dying process and providing patient and caregiver support.

Home-based palliative care for cancer patients: Evaluating a decade of nursing-led interventionsAmerican Journal of Hospice and Palliative Medicine; Júnia de Oliveira Alves, RN; Eduardo Bruera, MD; Mônica Isaura Corrêa, MD; Sonia Souza, PhD; Marília Ávila de Freitas Aguiar, PhD; Ana Paula Drummond-Lage, PhD; 6/25Home-based palliative care is an effective approach for managing advanced-stage cancer patients, particularly in regions with limited healthcare infrastructure. In Brazil, the “Better at Home” Program enables interdisciplinary teams to deliver palliative care in patients’ homes, with nurses playing a central role in providing clinical and supportive interventions. Registered nurses (RNs) were responsible for complex procedures, supervision of nursing technicians (NTs), and caregiver training, while NTs performed routine clinical tasks and assisted with daily care. Notably, 99.4% of patients died at home, suggesting alignment with palliative goals of care. These findings underscore the central role of RNs in coordinating and delivering home-based palliative oncology care within a multidisciplinary framework.

Disparities in receipt of palliative-intent treatment among disaggregated Hispanic populations with breast, lung, and prostate cancer in the United StatesCancer; Shriya K. Garg BS; Khushi Kohli BA; Isha K. Garg BS; Yash K. Garg BS; Lilac G. Nguyen BS; Isabella S. Nguyen BS; Erin Jay G. Feliciano MD, MBA; Yefri A. Baez MD; Brandon A. Mahal MD; Puneeth Iyengar MD, PhD; Daniel R. Gomez MD, MBA; Kaitlyn Lapen MD; Edward Christopher Dee MD; 5/25 This study examines disparities in the receipt of palliative-intent interventions among Hispanic subgroups with advanced lung, breast, and prostate cancer. Among 945,894 total patients, disaggregated analyses revealed reduced receipt of palliative-intent interventions for patients with lung, breast, and prostate cancer of Mexican descent ... compared to non-Hispanic White patients. Receipt for patients of South or Central American descent was reduced in comparison to non-Hispanic White patients for lung and breast cancer ... Uptake of palliative interventions for metastatic lung and breast cancer was reduced for patients of Cuban descent ..., and was lower for patients of Dominican descent with breast cancer, compared to non-Hispanic White patients ... These findings demonstrate disparities in the receipt of palliative-intent interventions among disaggregated Hispanic subgroups. This study highlights the need for disaggregated research to further characterize these disparities and their drivers.

Antibiotics at end of life: Where are we now and where are we going? A narrative reviewAmerican Journal of Hospice and Palliative Medicine; by Patrick D Crowley, Francis X Whalen, Leslie R Siegel, Douglas W Challener; 8/25Antibiotics are frequently prescribed at the end of life, though the benefits and harms are not well understood. Prescribing practices vary based on individual situation and geographic location. Patients with cancer and those hospitalized receive more antibiotics than those enrolled in outpatient hospice. Urinary tract infections and pulmonary infections are the most common conditions treated with antibiotics at the end of life -most often with penicillin derivatives and vancomycin in the hospital, fluoroquinolones in outpatient, and cephalosporins in both settings. When asked, patients most often prefer limiting antibiotics to symptom management at the end of life. Physicians’ over-estimation of patient preference for antibiotics and the increased probability of misdiagnosis increases antibiotic prescription rates. Antibiotics can improve symptoms when used for specific diseases at the cost of drug reactions, resistant organisms, and delayed discharge. Antibiotic use has variable results on survival duration.

Palliative care knowledge, attitudes, and self-competence of nurses working in hospital settingsJournal of Palliative Care; Mona Ibrahim Hebeshy, PhD, RN; Darcy Copeland, PhD, RN; 6/25With the growing need to integrate palliative care into healthcare systems, nurses in hospital settings often provide care for patients with life-limiting conditions, many of whom lack formal education in palliative care. [Conclusions:] Nurses generally feel competent; however, they often lack confidence in addressing patients’ social and spiritual needs. They experienced unease when discussing death and exhibited paternalistic attitudes. Significant differences were found in educational background, nursing experience, personal caregiving experience, and practice setting. Positive correlations exist between attitudes, knowledge, and self-competence, indicating that greater knowledge and competence were associated with better attitudes toward end-of-life care.

Fireproofing the soul: Navigating fear of the afterlife among palliative care patientsJournal of Palliative Medicine; Ptr Shannon Blower, Jonathan Walker, Lucius Walker, Steven Radwany; 6/25Among palliative care patients, spiritual uncertainty about what may await them after death is a fairly common but often overlooked source of anxiety. Specifically, patients (especially those from orthodox Christian backgrounds that propound the concept of hell as a literal place) may harbor unexpressed fears about being consigned to hell due to the perceived sins they have committed in life. Such fears can be genuinely debilitating and may result in non-responsiveness to traditional palliative therapy. Here, we discuss our experiences with this phenomenon and propose some possible solutions. We offer readers suggestions for how to best identify potential sufferers, broach the subject with such patients, and reassure them.

Medicare Advantage plan disenrollment: Beneficiaries cite access, cost, and quality among reasons for leavingHealth Affairs; by Geoffrey J. Hoffman, Lianlian Lei, Ishrat Alam, Myra Kim, Lillian Min, Zhaohui Fan, Deborah Levine; 6/25Medicare Advantage (MA) is growing in popularity, but it is seeing substantial plan disenrollments among high-risk Medicare beneficiaries. Understanding and addressing factors associated with disenrollment are crucial for improving MA access and quality but are complicated by data issues, including the inability to adequately assess beneficiaries’ perceptions of access and quality in MA... Difficulty accessing needed medical care was more strongly associated with MA-to–traditional Medicare exits than MA-to-MA plan switching. Dissatisfaction with access, cost, and quality was much more common for enrollees in poor health. These findings renew concerns about access to high-quality care for high-risk and other MA enrollees.

Strengths and opportunities: Clinicians' perspectives on palliative care for Amyotrophic Lateral Sclerosis (ALS) in the United StatesMuscle & Nerve; Kara E Bischoff, Gayle Kojimoto, David L O'Riordan, Yaowaree L Leavell, Samuel Maiser, Astrid Grouls, Alexander K Smith, Steven Z Pantilat, Benzi M Kluger, Ambereen K Mehta; 6/25Half of ALS clinicians [surveyed] reported they are able to manage patients' pain (55%) and mood symptoms (52%) "very well." Fewer reported managing care partner needs (43%) and spiritual/existential distress (29%) "very well." Fifty-eight percent of pALS [people with ALS] are referred to outpatient PC and 69% to hospice at some point in the illness. ALS clinicians generally felt satisfied with PC teams' care, but PC clinicians were less confident managing motor symptoms (51% confident) and helping care partners understand how to provide care (51%) and use equipment (25%). Most clinicians felt the quality of PC provided by ALS (77%) and PC (90%) teams is good/excellent. However, qualitative comments highlighted that both ALS and PC clinicians have knowledge gaps, and collaboration between ALS and PC clinicians should increase.