Literature Review

Death literacy is fostering positive conversations about the end Counterpunch; by Caren Martineau; 5/30/25 “[D]eath literacy is defined as the knowledge and skills that make it possible to understand and act upon the end-of-life and death care options,” according to a 2024 article in the journal Palliative Care and Social Practice, and its four foundational pillars: knowledge, skills, experiential learning, and social action. ... The U.S. Census named 2024 as the start of “Peak 65,” a period that will last through 2027. Around 4.1 million Americans are expected to turn 65 each year from 2024 to 2027 (approximately 11,000 a day). By 2030, all baby boomers will be 65 or older. Implications of “Peak 65” include:

Alive welcomes local healthcare leader as new CEO Alive Hospice; Press Release; 6/4/25 Alive, Middle Tennessee’s only nonprofit provider of hospice, palliative care and end-of-life services, today announced Amir Hamad as the organization’s new president and chief executive officer. He will begin his new role on June 30. A healthcare executive with more than 20 years of experience, Hamad comes to Alive from Ascension Saint Thomas Hospital West where he served as Vice President and Chief Nursing Officer overseeing over 1,800 employees and managing operations for one of the state’s top acute care hospitals. Hamad’s hiring comes as the beloved organization is gearing up to celebrate its 50th Anniversary in November. Alive was the first hospice established in America’s heartland and the third in the nation in 1975. 

A World War II hero is facing his final battle - with Medicare | PennLive letters PennLive Patriot News; by PenLive Letters to the Editor; 6/5/25 “Is this how one treats a 100-year-old World War II Army veteran?” I am such, having defended my country in the Philippines and then as one of the first GIs to step on Japan’s shores when it surrendered. Today, I am a widower, living alone under hospice care in the same small, comfortable home my wife and I cherished for so many years. My health condition has deteriorated dramatically, due to the ravages of ESRD, bladder cancer, anemia, high blood pressure, depression, and loss of balance. I am mostly bedridden, waiting for the inevitable. And yet, just now, I have received a Notice of Discharge from hospice because of an “extended prognosis,” literally meaning in lay terms that, “I’m living too long for hospice and Medicare purposes.” They argue that I’m now able enough medically to make it on my own without hospice care! ... I know I have only weeks, perhaps a month to live, but their rejoinder is simply, “Thank you for your service, but get out of our sight.”Editor's note: Click here for a similar related article and my editor's note, Dementia patient discharged from hospice over Medicare requirement. Here’s why it happened. (One of our "most read" Sunday posts.) These cases are too common. Basic communication, information, and coordinated care planning can mitigate much of the distress and pain. How does this dynamic play out with the patients and families you serve?

10 Signs death is near for dementia patients The Healthy; by Dr. Patricia Varacollo, DO; 6/2/25 For families and caregivers, recognizing the final stages of dementia can be difficult, but understanding the signs can help ensure comfort and dignity in a loved one's last days. Dr. Koncilja highlights these key indicators that may suggest the end of life is near:

Hope Hospice Center celebrates in Missoula ahead of July openingKPAX News; by Jill Valley; 6/3/25After an eight-year journey marked by community support, the Hope Hospice Center held a dedication and ribbon-cutting ceremony Tuesday ahead of its July opening. The state-of-the-art facility is only the second of its kind in Montana... The dream of the Hope Hospice Center began in 2017 as community leaders and healthcare professionals recognized the need for specialized end-of-life care in the region... The $15.4 million project was supported 100% by philanthropic giving.

MLN Fact Sheet: Creating an effective Hospice Plan of CareCenters for Medicare & Medicaid Services, Medicare Learning Network (MLN); 5/10/25 The hospice plan of care (POC) maps out needs and services given to a Medicare patient facing a terminal illness, as well as the patient’s family or caregiver. CMS data shows that some hospice POCs are incomplete or not followed correctly. This fact sheet educates on creating and coordinating successful hospice POCs. The primary goal of hospice care is to meet the holistic needs of an individual and their caregiver and family when curative care is no longer an option. To support this goal:

Ethics talk: Are private equity investments really different from other ownership structures in health care?AMA Journal of Ethics, Podcast May 2025; by Robert I. Field, PhD, JD, MPH; 5/30/25Dr. Robert I. Field joins Ethics Talk to discuss whether and to what extent private equity firms’ increasing presence in health care deserves our scrutiny and what policy makers, clinicians, and patients should know about responding to private equity ownership stakes in the organizations where they work and where they go for health services. 

Hospices facing a US caregiving ‘crisis’ Hospice News; by Holly Vossel; 6/2/25 Family caregivers in the United States are being challenged by a swelling aging population inneed of greater support and stronger policy infrastructures. Much room for improvement exists at both state and federal levels when it comes to recognizing the important roles that family caregivers play, according to Steven Lee, co-founder and CEO of ianacare, a Boston-based patient and caregiver resource company. More innovative care models and disease-specific reimbursement options have widened pathways for hospice providers to improve family caregiver support, Lee said in a recent Hospice News Elevate podcast. But these fall short of addressing the diverse scope of practical, emotional and financial needs, he stated. Editor's note: This article has an excellent map of US states with caregiver categories for "Well-Supported," "Safe for Now," "High Risk," and "Critical" (courtesy of Otsuka America Pharmaceutical). Additionally, our sponsor Hospice Analytics provides the National Hospice Locator, for caregivers/families to find hospices that serve in each US county, and sorted by their quality scores. And, our sponsor Composing Life equips hospice organizations with caregiver/family video libraries that span the continuum of serious illness, hospice, and grief care. 

Research study participation, 5/31/25

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

A strategic path forward for hospice and palliative care: A white paper on the potential future of the fieldPalliative Medicine Reports; by Ira Byock; 6/5/25The field of hospice and palliative care in the United States is experiencing serious problems and faces an uncertain future. Quality of hospice care is highly variable. Unethical hospice business practices are common in some regions. Palliative care’s integration within American health care has stalled, despite demonstrating that much better care for seriously ill and dying people is both feasible and affordable... Efforts must start with zero tolerance of fraudulent business and clinical practices that harm vulnerable patients. The four components of this strategic approach are:

Online dialectical behavioral therapy for emotion dysregulation in people with chronic pain-A randomized clinical trialJAMA Network Open; Nell Norman-Nott, BPsychSc; Nancy E. Briggs, PhD; Negin Hesam-Shariati, PhD; Chelsey R. Wilks, PhD; Jessica Schroeder, PhD; Ashish D. Diwan, MD, PhD; Jina Suh, PhD; Jill M. Newby, PhD; Toby Newton-John, PhD; Yann Quidé, PhD; James H. McAuley, PhD; Sylvia M. Gustin, PhD; 5/25Chronic pain, defined as pain persisting beyond 3 months,1 affects 20% to 30% of the population. Beyond its sensory experience, chronic pain is an intrinsically emotional experience associated with heightened negative emotions, including anger, worry, and low mood, alongside a diminished capacity to regulate emotions. Dysregulated emotions contribute to comorbid psychological disorders; symptoms of anxiety and depression, which are present in 50% to 80% of people with chronic pain; and worsening pain intensity. One emotion regulation–focused intervention being adapted for chronic pain is dialectical behavioral therapy (DBT). In DBT skills training, emotion regulation is improved by encouraging emotion recognition, emotion expression, and reaction evaluation. Results of small in-person trials of DBT for people with chronic pain show promise to improve emotion dysregulation, depression, anxiety, and pain intensity.

Naming the pain: Grief-ism, grief-ist, and the linguistics of lossIllness, Crisis & Loss; Laurel E. Hilliker, Bob Baugher; 5/25This article introduces two new terms, Grief-ism and Grief-ist, to expose some of the behaviors, actions, inactions, and unrealistic expectations of others (from individual support persons to societal institutions) towards bereaved individuals. In this article, we provide examples of subtle prejudice, discrimination, and marginalization involving those adjusting to significant loss. As well, this work draws attention to the medicalization and policing of the process of grief by well-meaning others. We believe these actions accumulate over time, weigh down those who are grieving loss, and tend to make the grief feel unsupported. As a result, people coping with the loss of a loved one may experience feelings of isolation and, in some cases, a lengthening of the grief process.