Literature Review

Kim Mooney-Doyle awarded nearly $500,000 to study communication needs in families of seriously ill childrenThe Elm of the University of Maryland, by Mary Therese Phelan; 2/15/24Kim Mooney-Doyle, PhD, RN, CPNP-AC, assistant professor at the University of Maryland School of Nursing (UMSON), has been awarded a two-year R21 grant of $460,000 from the National Institute of Nursing Research (NINR) to research how understanding family communication during serious pediatric illness, from the perspective of adolescent siblings and parents, provides opportunities to prevent long-term distress.

Palliative sedation: ethics in clinical practice guidelines - systematic reviewBJM Supportive & Palliative Care, by Martyna Tomczyk, Cécile Jaques, Ralf J Jox; 8/23Effective cooperation between palliative care clinicians and ethicists should be encouraged, in order to integrate in particular the crucial ethical issues of continuous deep sedation until death when developing or updating clinical practice guidelines on palliative sedation.

Perspectives on transfusions for hospice patients with blood cancers: A survey of hospice providersJournal of Pain and Symptom Management, by Helen P Knight, Caitlin Brennan, Susan Lysaght Hurley, Anna J Tidswell, Melissa D Aldridge, Kimberly S Johnson, Edo Banach, James A Tulsky, Gregory A Abel, Oreofe O Odejide; 1/24We received 113 completed surveys (response rate = 23.5%). Of the cohort, 2.7% reported that their agency always offers transfusions, 40.7% reported sometimes offering transfusions, and 54.9% reported never offering transfusions... Most respondents (76.6%) identified lack of transfusion access in hospice as a barrier to hospice enrollment for blood cancer patients. The top intervention considered as "very helpful" for increasing enrollment was additional reimbursement for transfusions (72.1%).

Alzheimer's Disease and Related Dementias: Caregiver perspectives on hospice re-enrollment following a hospice live dischargeJournal of Palliative Medicine, by Stephanie P Wladkowski, Susan Enguídanos; 10/23Three-quarters of participants (n = 16) would consider re-enrolling their loved one in hospice. However, some believed they would have to wait for a medical crisis (n = 6) to re-enroll, while others (n = 10) questioned the appropriateness of hospice for patients with Alzheimer's disease and related dementias if they cannot remain in hospice care until death.

Patient Focus: When Should People With Heart Failure Who Were Admitted to the Hospital Think About Palliative or Hospice Care? An Explanation of “Factors Associated with Mortality and Hospice Use Among Medicare Beneficiaries With Heart Failure Who Received Home Health Services”Journal of Cardiac Failure, by Spencer Carter, MD; Jennifer T. Thibodeau, MD, MSCS; 12/23Hospital stays for patients with heart failure are serious events that mean that the heart may be sicker. Some people with heart failure who are in the hospital are at higher risk of dying within 6 months after their hospital stay. This study describes differing characteristics of people who might be at higher risk of death and who may benefit from palliative or hospice care to better support them.Publisher's note: Also see https://onlinejcf.com/article/S1071-9164(23)00922-3/abstract. 

Saturday NewslettersResearch literature is the focus of Saturday newsletters - enjoy!

Attending to the moral meaning of painPain Management Nursing, by Esther I Bernhofer; 2/24In addition to a physical and emotional experience, pain is also a morally infused experience with deep, often subconscious, meaning for many sufferers. Whether justified or not, for many people, pain may represent loss, judgement, unworthiness, abandonment, punishment, and even existential suffering and thoughts of death... Yet the moral meaning of pain is rarely discussed and is often overlooked when establishing a relationship with and a treatment plan for a person with pain.

Participant safety in multisite, randomized, double-blind, placebo-controlled clinical trials in hospice/palliative care: Data from the contracted studies of the Australian National Palliative Care Clinical Studies CollaborativeJournal of Palliative Medicine, by David C. Currow, Belinda Fazekas, Linda Brown, Slavica Kochovska, Katherine Clark, Meera R. Agar; 1/24Controversies surround conduct of phase III clinical trials in palliative care... These studies are safe for participants and generate knowledge to support informed patient decision making.

A comparison of hospice care utilization between rural and urban children in Appalachia: A geographic information systems analysisAmerican Journal of Hospice and Palliative Care, by Radion Svynarenko, Guoping Huang, Jessica Keim-Malpass, Melanie J Cozad, Kerri A Qualls, Whitney Stone Sharp, Deb A Kirkland, Lisa C Lindley; 3/24Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia... State-level policies should be developed to reduce driving times from hospice providers.

Hospice capacity to provide General Inpatient Care: Emergency Department utilization and live discharge among cancer patientsAmerican Journal of Hospice and Palliative Care, by Kyusuk Chung, M Courtney Hughes, Sara Rahmanian Koushkaki, Mia Richelle Risberg, Michelle Alcantara, Jennifer M Amico; 1/24Our results suggest that hospices capable of providing GIP care have lower live discharge rates than their counterparts. However, the fact that GIP care tends to be provided too close to death limits its effectiveness in preventing avoidable emergency department use.

Hospice care experiences among Medicare decedents with and without COVID-19, 2020–2021Journal of Pain and Symptom Management, by Ann Haas MS, MPH; Rebecca Anhang Price PhD; Marc N. Elliott PhD; Joan M. Teno MD, MS; Maria DeYoreo PhD; 2/24COVID-19, the third leading cause of death in the U.S. in 2020–2021, affected hospice care for all patients and their caregivers in many ways; patients with COVID-19 faced additional restrictions on visitations as well as direct effects of the disease. Using CAHPS Hospice Survey data from 3274 hospices nationally, we found that caregivers of Medicare decedents without COVID-19 diagnoses in 2020–2021 reported slightly worse hospice care experiences than caregivers prior to the pandemic. However, experiences for decedents with COVID-19 early in the pandemic (Quarters 2–4 of 2020) were 3.2 to 4.3 points lower than for decedents without COVID-19; these are medium-to-large differences, and larger than observed among any of the 20 most common primary diagnosis groups for the 2 overall assessments of care.

Study testing new strategy for spotting, managing pain in dementia patients McKnights Long-Term Care News, by Kimberly Marselas; 2/1/24Up to 80% of dementia patients living in nursing homes also experience pain, but many struggle to communicate their symptoms. A new, $2.1 million study aims to test recently revised guidelines for staff members tasked with detecting and managing that pain. ... Barbara Resnick, PhD, RN, professor and associate dean for research at the University of Maryland School of Nursing, will lead the project at 12 nursing homes over the next five years.

Coming to terms : Female veterans' experience of serious illnessJournal of Hospice & Palliative Nursing, by Varilek, Brandon M. PhD, RN, PCCN-K, CCTC, CNE, CHPN; Varilek, Brandon M. PhD, RN, PCCN-K, CCTC, CNE, CHPN; Isaacson, Mary J. PhD, RN, RHNC, CHPN, FPCN; 1/16/24Female veteran populations are growing internationally and are more likely than men to develop certain serious illnesses, including some cancers. In the United States, fewer than 50% of eligible female veterans sought care at Veteran Affairs facilities. In addition, female veterans are not well represented within palliative care research, and little research exists that explores the female veteran experience of living with a serious illness. The purpose of this study was to explore female veterans' experiences of living with a serious illness.