Literature Review

Racial disparities in ALS progression: Time to clinical events observed in a single center Wiley Online Library; by Shanshan Chen, Demetrius Carter, Jillian Prier, JoBeth Bingham, Shital Patel, Manisha Kotay, Paula Burke Brockenbrough, Kelly Gwathmey; 3/10/25 Studies examining racial differences in ALS have previously focused on diagnostic delay and disease severity. Time to critical clinical events has rarely been investigated, despite its importance in revealing differences in ALS patients' disease courses. This study explores racial disparities in time to specific clinical events in Black and non-Hispanic White ALS patients at a single center. ... Our single-center findings demonstrate a large racial difference in time to clinical events for Black versus White ALS patients referred for NIV, AAC, hospice, and wheelchair, suggesting more advanced disease at the time of presentation or more rapid progression.

Quality of life in heart failure. The heart of the matter. A scientific statement of the Heart Failure Association and the European Association of Preventive Cardiology of the European Society of CardiologyEuropean Journal of Heart Failure; Maurizio Volterrani, Geza Halasz, Stamatis Adamopoulos, Pier Giuseppe Agostoni, Javed Butler, Andrew J.S. Coats, Alan Cohen-Solal, Wolfram Doehner, Gerasimos Filippatos, Ewa Jankowska, Carolyn S.P. Lam, Ekaterini Lambrinou, Lars H. Lund, Giuseppe Rosano, Marco Metra, Stefania Paolillo, Pasquale Perrone Filardi, Amina Rakisheva, Gianluigi Savarese, Petar Seferovic, Carlo Gabriele Tocchetti, Massimo Piepoli; 3/25 Patients with heart failure (HF) experience much worse QoL [quality of life] and effort intolerance than both the general population and people with other chronic conditions, since they present a range of physical and psychological symptoms, including shortness of breath, chest discomfort, fatigue, fluid congestion, trouble with sleeping, and depression. The importance of QoL for patients with HF is highlighted in a survey showing that 61% attached more weight to QoL over longevity, with 9% and 14% willing to trade 6 and 12 months, respectively, for perfect health and better QoL.It is for these reasons that the Heart Failure Association is developing a new score for QoL in HF, sensitive to mechanism-specific interventions and tailored to be sensitive to changes within individual patients. 

Feasibility study of using electronic patient-reported outcomes to screen patients with advanced solid cancers for palliative care needsJournal of Palliative Medicine; Tara L Kaufmann, Matthew Kearney, Dagoberto Cortez, John W Saxton, Katie Goodfellow, Carolyn Smith, Patrick Chang, Katherine Sebastian, Aaron Galaznik, Julie Scott, Elizabeth Ann Kvale, Arif H Kamal, Antonia V Bennett, Angela M Stover, Ashley M Henneghan, Michael Pignone, Gabrielle Betty Rocque; 3/25Standardized, needs-based screening and triage systems are essential to more effectively address patients' palliative care needs. We developed a 13-item ePRO [electronic patient-reported outcomes] palliative care survey to assess multidimensional palliative care needs and conducted a pilot study (n = 25) of a palliative care screening intervention using ePRO monitoring and presentation of ePRO reports to a multidisciplinary care team. Patients found the ePRO palliative survey acceptable and appropriate. Screening patients for unmet palliative needs using ePRO monitoring is feasible, acceptable, and appropriate among patients, but more work is needed to understand the perspectives of diverse patients and how to integrate ePRO palliative care screening into clinical workflows.

Evaluating performance of the Surprise Question to predict 12-month mortality in patients with end-stage liver diseaseAmerican Journal of Hospice and Palliative Care; Sarah Homann, MD; Jamie Pfaff, MD; Elizabeth Stovicek, MD; Rajiv Agarwal, MD, MSC;, Sumathi K. Misra, MD, MPH; Jill M. Pulley, MBA; Justin K. Siemann, PhD; Ashley Spann, MD, MSCAI; Stacey Tillman, MD; Cheryl L. Gatto, PhD; Mohana Karlekar, MD; 2/25ESLD [end-stage liver disease] is associated with significant morbidity and mortality. Early PC engagement has been proposed as a solution to improve the physical and psychological burden associated with ESLD. ... hepatologists were asked the SQ [surprise question]: “Would you be surprised if this patient were to die in the next 12 months?” as a prompt to consider consultation to specialty PC [palliative care]. While the SQ should not be solely used as a prognostic indicator of death, our study proves that the SQ can be utilized by hepatologists as a screening tool with good sensitivity for identifying patients with ESLD who may be at higher risk of death and therefore may benefit from PC co-management.

Perceptions of patient-clinician communication among adults with and without serious illnessJAMA Network Open; Carine Davila, Sarah Nouri, Stephanie H Chan, Brian Feltz, Anna Gosline, Zamawa Arenas, Jane Kavanagh, Joanna Paladino, Lindsay A Dow, Vicki A Jackson, Rebecca Sudore, Christine S Ritchie, Elizabeth Lindenberger; 3/25In this cross-sectional study, adults with serious illness more often had worse patient-clinician communication experiences. Compared with adults without serious illness, adults with serious illness were more likely to report leaving a visit unsure about next steps ...; being afraid to ask questions or speak up ...; believing they were talked down to or made to feel inferior...; and believing that they were treated unfairly by clinicians ... Further research is needed to better understand and develop interventions to improve perceptions of patient-clinician communication experiences for adults with serious illness.

Medical interpreters’ experiences with patients who are near end-of-life and their family membersJournal of Pain and Symptom Management; Joycelyn Howard DNP, RN, AGCNS, ACHPN ; Alexia M. Torke MD, MS; Susan E. Hickman PhD; Greg Sachs MD; Sylk Sotto-Santiago EdD, MBA, MPS; James E. Slaven MS, MA; Denise Robinson PhD, RN, FNP; 3/25In 2019 the United States Census Bureau reported 8% of the United States Population “speak English less than very well”. Ensuring individuals with a non-English language preference (NELP), previously referred to as limited English proficiency, have equitable access to healthcare includes providing high quality interpreter services. Although self-efficacy for interpreting EOL [end of life]conversations is generally high, interpreters desire education about EOL care. Interventions are also needed to address the high emotional toll of interpreting EOL conversations. Education and training about EOL care may help them to not only convey information accurately but also cope with emotional nuances characteristic of these significant conversations, ultimately elevating the quality of care for patients and family members in vulnerable and important moments.

Disparities in end-of-life symptom burden linked to complex interplay among wealth, health, and social supportJAMA Network Open; Peter A. Boling, MD; 3/25On average, US health care spending in the last year of life alone was $80,000, with 12% ($9,500) being out of pocket and mostly incurred before the final 6 months. This problem worsened in the past decade when the nonspecific diagnosis of failure to thrive was removed as a condition eligible for hospice care and more stringent definitions were applied for dementia, which became the next bubble as the hospice balloon was squeezed. Hospice care is a means of reducing symptom burden, but the Medicare payment model discourages prolonged enrollment during slowly progressing advanced chronic illness and effectively limits funding of social support during hospice care, which is particularly problematic for patients with cognitive and functional impairment and for their friends and families. Considering suffering as a medical condition warranting treatment rather than a social problem requiring support services might help with the evolution of a Medicare policy that might provide a more graduated approach to end-of-life care.

Understanding and addressing the US hospital bed shortage—Build, Baby, BuildJAMA Network Open; Alexander T. Janke, MD, MHS, MSc; Arjun K. Venkatesh, MD, MBA, MHS; 2/25In the study by Leuchter et al, they provide simple yet provocative projections for the future of hospital care. They project that national hospital occupancy will exceed 85% by 2032, a critical threshold where basic hospital operations can become dysfunctional and even unsafe. Leuchter et al begin to quantify the story already felt at the bedside in hospitals across the nation—namely, a trajectory toward inadequate supply of hospital care for the anticipated demand of the coming decade. US residents are older and more medically complex than ever. Technologically sophisticated surgical interventions and medical therapies have transformed the long-term survival rates for serious conditions, such as end-stage kidney disease, heart failure, and chronic obstructive lung disease. The US needs greater hospital bed capacity, particularly for critical care and complex care services.

The preference for acute rehospitalization scale: Evaluating preference for acute rehospitalization in pediatric hospice patientsJournal of Palliative Medicine; Kelley Newcomer, Katherine Maddox; 3/25Since the passage of the Affordable Care Act, children are able to access pediatric hospice while still pursuing life-prolonging care. This can create confusion between hospice and palliative care staff and families about current goals of care (GOC), which evolve over time. Hospice and palliative care teams created, implemented, and evaluated a five-point scale to summarize the Preference for Acute Rehospitalization (PAR) Scale for children on concurrent care hospice. Most users reported they agreed or strongly agreed the PAR Scale helped them to understand families' GOC and feel more confident giving advice with urgent questions.

Palliative care nurse specialists' perspectives on spiritual care at end of life-A scoping reviewJournal of Hospice and Palliative Nursing; Bronagh Dunning, Michael Connolly, Fiona Timmins; 3/25The research demonstrates that specialist palliative care nurses perceive spiritual care as an important element of holistic care at end of life; however, these nurses also agree that spiritual care is lacking. This deficiency results from a lack of education in spirituality; experience of the nurse; the nurses' own spiritual and religious beliefs and values, fears, and difficulties in communication; and the nurse-patient relationship. The findings demonstrate the necessity to increase the level of spiritual care education in nurse programs, educating nurses on the provision of spiritual care, and how to deal with conflicts in spiritual and religious beliefs.

The analysis of hospice trends in the United States in 2020 among Medicare beneficiariesAmerican Journal of Hospice and Palliative Medicine; Noor Chughtai, BS; Cortland Brown, MS; Jordan Shelestak, MS; Jared Nichols, DO; 3/25 While hospice care has many benefits, there is variability among the service throughout the United States. Public hospice care data from data.cms.gov were analyzed to explore these trends. Findings indicate that Medicare beneficiaries in the South and West regions of the U.S. experience longer hospice stays, and in contrast, those in the Northeast and Midwest (including Alaska) reflected reduction from this average. Notably, states with shorter hospice durations showed a higher proportion of neoplastic disorders as the primary diagnosis, while those with longer stays showed an inverse relationship with greater prevalence of circulatory system disorders and lower incidence of neoplastic diagnoses. Additionally, the analysis reveals a consistent decline in average hospice length with increasing age among patients aged 80-85 across all U.S. regions, as expected.

Using virtual reality to improve outcomes related to quality of life among older adults with serious illnesses: Systematic review of randomized controlled trialsJournal of Medical Internet Research; Bhagvat Maheta, Alexandra Kraft, Nickolas Interrante, Soraya Fereydooni, Jeremy Bailenson, Brian Beams, Christina Keny, Thomas Osborne, Karleen Giannitrapani, Karl Lorenz; 2/25Virtual reality (VR) has promise as an innovative nonpharmacologic treatment for improving a patient's quality of life. VR can be used as an adjunct or treatment for many acute and chronic conditions, including serious illnesses. Nascent evidence suggests VR's potential in mitigating pain, anxiety, and depression and improving mobility among persons with serious illnesses.

An opportunity to advance cannabis science—DEA reschedulingJAMA Psychiatry; Kevin P. Hill, MD, MHS; Anshul V. Puli, BS; 2/25In 1970, the US Congress enacted the Controlled Substances Act (CSA), establishing a scheduling system for drugs based on their medical use, abuse potential, and safety. The most restrictive classification is Schedule I; cannabis along with other drugs, such as heroin and lysergic acid diethylamide (LSD), have this classification. May 13, 2024, the Drug Enforcement Agency (DEA), the agency regulating substance scheduling, issued a Notice of Proposed Rulemaking to investigate rescheduling cannabis from Schedule I to Schedule III. This was due to a recommendation from the US Department of Health and Human Services (HHS) to reschedule based on its review of the medical and scientific cannabis research. Still, the FDA investigated HHS’ CAMU [cannabis’ current accepted medical use] claim and found some credible scientific support for treating “anorexia related to a medical condition, nausea and vomiting (eg, chemotherapy-induced), and pain.”