Literature Review

Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversationsAmerican Journal of Hospice and Palliative Medicine; Tamiko Younge, MD, MSHS; Hailey Moore, MS; Jessica D. Thompkins, BSN, RN, CPN; Maureen E. Lyon, PhD; 7/25Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases. We identified 13 goals of care themes: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Conclusions:Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals.

Benefits of emergency department-initiated goals of care conversations and palliative care consultations among older adults with chronic or serious life-limiting illnessesJournal of the American College of Emergency Physicians Open; by Jennifer Johnson, Timmy Li, Megan Mandile, Santiago Lopez, Molly McCann-Pineo, Landon Witz, Payal Sud; 8/25Initiating goals of care (GOC) conversations and palliative care consultations in emergency departments (EDs), compared with inpatient settings, may be associated with improved outcomes among older adults with chronic or serious life-limiting illnesses. ED-initiated GOC conversations were associated with approximately 3-day shorter hospitalizations and a $2689 contribution margin increase, suggesting increased health care cost savings. ED-initiated palliative care consultations were associated with approximately 7-day shorter hospitalizations, 6 fewer excess days in acute care, 1 fewer intensive care day, and higher odds of hospice discharge. Starting these discussions earlier in the ED may help hospitals optimize resources while ensuring treatment aligns with patients’ palliative needs and care preferences.

Healthy days at home and prognosis of older adults with cancer and non-cancer serious life-limiting illnessesBMC Geriatrics; Oluwaseun J. Adeyemi, Nina Siman, Allison M. Cuthel, Keith S. Goldfeld, Corita R. Grudzen; 7/25Approximately 75% of U.S. older adults with serious life limiting illnesses visit the emergency department (ED) in the last six months of life, with three quarters of these individuals being admitted to the hospital. In this context, Healthy Days at Home (HDaH) and prognosis have emerged as important concepts for assessing and guiding care among older adults with serious life-limiting illnesses. HDaH is a patient-centered outcome measure that captures the number of days individuals spend at home without hospitalizations or ED visits. Among US older adults with serious life-limiting illnesses, worse prognosis is associated with fewer HDaH. Increasing age is associated with fewer HDaH, with substantial variability by race/ethnicity. In contrast, cancer is associated with more HDaH.Assistant Editor's note: "Healthy Days at Home (HDaH)" is such a fabulous concept, and so in keeping with the intent and goals of palliative care. Perhaps a HDaH is a quality measure that palliative care providers might consider using. 

Complications of gastrostomy tube placement in patients with dementia: A national inpatient analysisSurgical Endoscopy; Spencer R. Goble, Thomas M. Leventhal; 6/25Gastrostomy tubes have not been shown to improve long-term outcomes in patients with dementia, yet the risk of short-term complications have not been well characterized in this population. Conclusions: Gastrostomy tube placement complications do not appear to be increased in patients with dementia. However, those who undergo gastrostomy tube placement are less likely to discharge to home which has important quality of life implications.

Physician Orders for Life-Sustaining Treatment in rural VirginiaSage Open Aging; Pamela B Teaster, E Carlisle Shealy; 6/25Physician Orders for Life-Sustaining Treatment (POLST) arose in 1991 to improve end-of life-care for patients with advanced, chronic, and progressive illnesses whose death is imminent within a year. POLST attempted to address problems inherent in advance directives (e.g., poor completion rates, confusing form language, dismal communication with a surrogate). POLST exists in all U.S. states, although each is unique and uptake is inconsistent, particularly in rural areas. The purpose of this study was to investigate current practices and barriers around POLST in a rural area using an online survey and interviews with practitioners. Findings included the need for consistent funding, clarification of goals, and greater and varied opportunities for staff training.

Parental authority and the weight of assent: Navigating moral dilemmas in adolescent end of life careJournal of Bioethical Inquiry; A. L. Heifner, M. M. Ortiz, T. L. Major-Kincade, C. O’Connor; 6/25 In the current era of moral pluralism, medical decisions must account for much more than clinical considerations: they must abide by legal standards of decision-making which usually prioritize parental preferences. Conflict abounds between the parent or other legal decision-maker and healthcare team in situations where the parent prefers not to disclose the severity of the adolescent’s illness or the healthcare team believes continuing lifesaving therapies are not in the adolescent’s best interest. These dilemmas challenge how we solicit adolescents’ preferences (assent) and their options for refusal (dissent). We explore the moral distress healthcare workers face navigating conflict amongst various stakeholders involved in the adolescent’s end-of-life care. Strategies to minimize moral distress are also provided.

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.

[Canada] Electronic decision support for deprescribing in older adults living in long-term care-A stepped-wedge cluster randomized trialJAMA Network Open; Emily G. McDonald, MD, MSc; Justine L. Estey, MSc; Cody Davenport, MSc; Émilie Bortolussi-Courval, RN; Jeffrey Gaudet, MSc; Pierre Philippe Wilson Registe, MSc, MPH; Todd C. Lee, MD, MPH; Carole Goodine, PharmD; 5/25Potentially inappropriate prescribing (PIP) occurs when medications that carry a higher risk of harm than benefit are prescribed. It occurs more often among older adults in the setting of polypharmacy (taking multiple medications) and is costly and harmful. PIP and potentially inappropriate medications (PIMs) contribute to excess adverse drug events, such as falls, fractures, cognitive decline, hospitalization, and death [and] the problem is more pronounced for older adults living in nursing homes (long-term care [LTC] homes). Depending on the screening criteria used, in some studies, the prevalence ranges from 67.8% to 87.7% of nursing home residents. Electronically generated, individualized reports that contained prioritized opportunities for deprescribing in older adults were paired with preexisting quarterly medication reviews [and] this study found that electronic decision support paired with the usual workflow could render the deprescribing process scalable and effective.

Utilization of antibiotics for the treatment of urinary tract infections in end-of-life patientsAmerican Journal of Hospice and Palliative Medicine; by Abigail Thomas, Lacey Davis, Allie Dolan, Rebecca Prewett; 8/25The use of antibiotics for end-of-life patients is controversial; currently there is limited guidance on the use of antibiotics in hospice patients... The purpose of this project is to examine the utilization of antibiotics for urinary tract infections (UTIs) in hospice patients... The prescribing of antibiotics in end-of-life patients is not always appropriate regardless of the PPS. This may indicate that antibiotics are initiated in asymptomatic hospice patients, and the utilization of unnecessary medications presents the risk of adverse effects.

Video palliative care improves symptoms but not outcomes in rural hospitals, study reveals McKnights Long-Term Care News; by Donna Shryer; 7/15/25 Researchers from the University of Alabama at Birmingham recently studied whether video consultations could improve palliative care for patients age 55 and older in small hospitals lacking specialized end-of-life services. Participants had an average age of 73. The study, published in JAMA Network Open, found that culturally tailored video consultations — designed with community input to reflect patients’ cultural values and communication preferences — led to a clinically meaningful but not statistically significant reduction in symptom distress. ... [The] video consultations had little effect on hospital readmissions or emergency department visits. The research addressed a critical healthcare gap, as the study notes that only 70% of the Deep South has access to palliative care services, compared to 85-94% in other US regions. This disparity particularly affects rural communities where specialized end-of-life care is often unavailable. 

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.