Literature Review

The talk nurses don't talk about enough: Death and dying Nurse.org - Nurse Converse podcast; by "Courtney" DNP, APRN, AGNP-C; 2/11/25 ... Nursing and medical curricula extensively cover subjects such as pathophysiology, pharmacology, and anatomy, yet they often fail to provide structured training on effective communication regarding death and dying. In the podcast, the hosts recall their own educational experiences, noting that they were not equipped with the tools or frameworks necessary to engage in these sensitive discussions. One telling example from a medical course on difficult conversations revealed that when students were asked if they had received any training on the subject, not a single hand was raised. 

Death Matters: The gift of presence: Tips for visiting someone who is dying Squim Gazette, Squim, WA; by Jeanette Stehr-Green, Volunteer Hospice of Clallam County; 2/12/25 We sometimes avoid visiting friends or family members who are terminally ill. We make lots of excuses. We don’t know what to say. We don’t know how to act. We don’t want to be a bother. The hard truth is that dying, the final stage of life, can be a lonely experience without the presence of family and friends. A visit during this time can bring comfort to the dying person and their family. It can also provide an opportunity to share feelings, reminisce, and say goodbye. Visiting a dying person seems difficult because most of us lack experience. It only takes a little courage and a few ideas to create a meaningful moment. ... Editor's note: These excellent guidelines empower hospice patients' families and friends--and protect patients' vulnerable energies and emotions--in multiple settings across the trajectory of dying. How might you adapt these for your own patient/caregiver support and community outreach?

Reimagining care and research for Amyotrophic Lateral SclerosisJAMA Neurology; Suma Babu, MBBS, MPH; Joshua M. Sharfstein, MD; Eva L. Feldman, MD, PhD; 1/25Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease involving progressive motor neuron degeneration. In 2022, US Congress and the National Institutes of Health (NIH) commissioned the National Academies of Science, Engineering and Medicine (NASEM) to identify priorities to make ALS a livable disease within a decade. After extensive deliberations and input from the public, researchers, and persons with lived experience, the committee released its report, Living With ALS. To accelerate progress in patient care and therapeutics, one of the report’s major recommendations was for the National Institute of Neurological Disorders and Stroke (NINDS) to fund a clinical trials network dedicated to ALS that is distributed across diverse geographic regions and integrated within a novel hub-and-spoke system of care and research for ALS. The hubs are ALS Centers of Excellence that provide patient care and research, both basic and clinical, while the spokes represent a large number of community and regional ALS clinics that provide care and link to hubs for research. By integrating ALS clinical trials within this structure, we have the potential to transform ALS care, drive innovation in ALS therapeutic development, and pave the way for breakthroughs in other neurodegenerative diseases. 

How to help caregivers of patients with dementia Physician's Weekly; by Linda Girgis, MD, FAAP; 2/13/25 Dr. Linda Girgis discusses how physicians can assist caregivers of patients with dementia, helping these critical caretakers avoid experiencing burnout. ... As doctors, we all have witnessed caregiver burnout. Often, it was a family member who bore the brunt of the responsibility, one for whom there were no vacation days or sick time available. Whatever specialty we practice, we know patients with dementia can present a significant problem. ... How can we assist caregivers of patients with dementia?

How to live when you know you are dying Equity Atlas; 2/11/25 Living with the knowledge of impending death is an incredibly challenging and emotional experience. Whether facing a terminal illness or a life-threatening situation, the idea of living when you know you are dying can be overwhelming. However, it is possible to find peace, acceptance, and even joy in the midst of such difficult circumstances. In this article, we will explore how to navigate this journey with grace and courage. ... How does one navigate this difficult journey? We turned to professionals in the field for their insights on how to live when you know you are dying.

Bringing children home: Kentucky Children’s Hospital’s approach to pediatric end-of-life care American Hospital Association; 2/8/25 When parents have a child with a serious illness, all they want is for their child to get well. If that no longer becomes a possibility, often all they want is to bring their child home. Most — around 70% — of pediatric deaths related to illness occur in the hospital, but the Kentucky Children’s Health Pediatric Advanced Care Team offers some families the chance to transport their child home using life-sustaining technology. That’s not an easy feat; these patients are medically fragile, and the outcome can be unpredictable. A team made up of hospital administrators, hospice providers, coroner and the transportation team comes up with a plan. The child’s parents complete an informed consent procedure, recognizing that their child may not survive the journey home. The transportation team tries to ensure that the journey is as comfortable as possible, as well as planning what to do if the child’s condition deteriorates on the journey. If that happens, he or she will be supported as they pass without resuscitation efforts.

Researchers outline new research priorities in neuropalliative care UNC Health and UNC School of Medicine, Chapel Hill, NC; by Winnie K. Lau, MD and David Y. Hwang, MD2/7/25... An emerging field, termed “neuropalliative care,” has taken shape over the past few years to help provide impactful, holistic care for patients with serious neurological disease. And now, experts in the field are seeking ways to improve the overall wellbeing of their patients and loved ones through the power of research. ... A special communication in JAMA Neurology, first-authored by Winnie K. Lau, MD, a neurocritical care physician and associate professor of neurology and senior-authored by David Y. Hwang, MD, professor of neurology and division chief of neurocritical care, describes needed research that can help advance patient care, including:

New report details financial, emotional toll of Parkinson’s on family caregivers McKnights Home Care; by Foster Stubbs; 2/4/25 A new report sheds a light on the unique challenges faced by family caregivers who care for loved ones with Parkinson’s disease (PD). The report, Parkinson’s Disease Caregiving in the US, features insights from secondary analysis and supplementary interviews with 10 PD caregivers. These caregivers average 31 hours of unpaid care per week; half of interviewed caregivers exceed 100 hours each week, according to the report. The National Alliance for Caregiving (NAC), with support from The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and Arcadia University, released the report.  

No one should die alone. A Cape Fear Valley initiative aims to make that true for patients The Fayetteville Observer, Fayetteville, NC; by Lizmary Evans; 2/5/25 No one should take their last breath alone, and the mission of a new volunteer group at Cape Fear Valley Medical Center will make sure that doesn't happen. The No One Dies Alone program, an internationally recognized initiative that began in 2001 at Sacred Heart Medical Center in Eugene, Oregon, provides trained companions to sit with dying patients who do not have loved ones available during their final moments, according to a news release. ... "Sitting at the bedside of another human being, keeping awake and alert — it’s a vigil," [Mary Draughn, the hospice patient care manager at Valley Hospice House in Fayetteville] said last week. "This vigil provides comfort, meaning, resolution and peace to both the dying person and the companion."

Arizona couple pleads guilty to $1.2B health care fraud Office of Public Affairs - U.S. Department of Justice; Press Release; 1/31/25 An Arizona couple pleaded guilty for causing over $1.2 billion of false and fraudulent claims to be submitted to Medicare and other health insurance programs for expensive, medically unnecessary wound grafts that were applied to elderly and terminally ill patients. According to court documents, Alexandra Gehrke, 39, and her husband, Jeffrey King, 46, both of Phoenix, conspired with others to orchestrate the massive scheme. Gehrke ran two companies, Apex Medical LLC and Viking Medical Consultants LLC, that contracted with medically untrained “sales representatives” to locate elderly patients, including hospice patients, who had wounds at any stage and order amniotic wound grafts from a specific graft distributor. 

Defining spine cancer pain syndromes: A systematic review and proposed terminologyGlobal Spine Journal; Markian Pahuta, MD, PhD, FRCSC; Ilya Laufer, MD; Sheng-fu Larry Lo, MD; Stefano Boriani, MD; Charles Fisher, MD, MHSC, FRCSC; Nicolas Dea, MD, MSc, FRCSC; Michael H. Weber, MD, MSc, PhD, FRCSC; Dean Chou, MD; Arjun Sahgal, MD, FRCPC; Laurence Rhines, MD; Jeremy Reynolds, MB.ChB, BSc (Hons), FRCS; Aron Lazary, MD, PhD; Alessandro Gasbarrinni, MD; Jorrit-Jan Verlaan, MD, PhD; Ziya Gokaslan, MD, FACS; Chetan Bettegowda, MD, PhD; Mohamed Sarraj, MD; Ori Barzilai, MD; AO Spine Knowledge Forum Tumor; 1/25The spine is the most common site of osseous metastasis, and over one-third of patients with carcinoma or hematological malignancy will develop spinal metastases. Vertebral metastases have a negative impact on patient function and heath related quality of life (HRQoL). We consolidate the terminology used in the literature and consolidated into clinically relevant nomenclature of biologic tumor pain, mechanical pain, radicular pain, neuropathic pain, and treatment related pain. This review helps standardize terminology for cancer-related pain which may help clinicians identify pain generators.

16 states where virus activity remains high: 5 updates Becker's Clinical Leadership; by Alexandra Murphy; 1/27/25 The CDC is reporting high levels of respiratory virus activity across the U.S. While respiratory syncytial virus levels are beginning to peak in many areas of the country, flu-related emergency department visits are at very high levels and are still rising, according to the latest data. Thirteen states are experiencing "high" respiratory virus activity: Texas, Oklahoma, South Dakota, Minnesota, Florida, Georgia, South Carolina, Maryland, Pennsylvania, New York, Connecticut, Hawaii and Washington, D.C. Three states are experiencing "very high" levels: New Hampshire, New Jersey and Wisconsin. [Click here for the CDC's "Respiratory Virus Activity Levels," with more detailed data and maps for all 50 states.]