Literature Review

The Alliance commends introduction of legislation to extend hospice telehealth flexibilities  National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 2/28/25 The National Alliance for Care at Home (the Alliance) is pleased to support the reintroduction of the Hospice Recertification Flexibility Act in the House of Representatives. This bipartisan legislation, H.R.1720, would extend telehealth flexibilities for hospice face-to-face (F2F) recertification. The F2F encounter is performed by a physician or nurse practitioner to evaluate the patient and collect clinical information used in determining continued eligibility for hospice. Introduced by Representatives Carol Miller (R-WV) and Jared Golden (D-ME), the bill would extend the F2F recertification flexibility for providers until December 31, 2027. Beginning January 1, 2026, the legislation also includes important guardrails to ensure appropriate use and requires the Centers for Medicare & Medicaid Services (CMS) to create a modifier to collect data on when the F2F encounter is conducted via telehealth. The Alliance, then through its legacy organizations, worked with lawmakers to ensure continued care transformation and access to care for high-quality providers. [Click on the title's link to continue reading.]

Hospice of the Piedmont offers discount book, conversation starters for family and friends Augusta Free Press, Waynesboro, VA; by Crystal Graham; 2/26/25 Hospice of the Piedmont has your ticket to discounts at restaurants, theaters, wineries and breweries as well as advice for starting a meaningful conversation with loved ones. ... The printed coupon book offers buy-one-get-one-free entrees, free theater tickets and half price wine tastings. It also includes thoughtful conversation starters designed to spark meaningful discussions with family and friends about life and its final journey. “So much of life happens around the dinner table, at a winery with friends or on a night out at the theater,” said Jenn Downs, chief marketing and development officer at HOP. “We wanted to give people a way to enjoy those experiences while encouraging people to have the kinds of conversations that truly matter.” Editor's note: Applause to Hospice of the Piedmont for this creative, engaging integration of community partnerships (with restaurants, theaters, etc.), hospice fund-raising, and catalyst for meaningful, potentially life-changing dialogues.

Contemporary patterns of end-of-life care among Medicare beneficiaries with advanced cancer JAMA Network - JAMA Health Forum; by Youngmin Kwon, PhD; Xin Hu, PhD, MPSH; Kewei Sylvia Shi, MPH; Jingxuan Zhao, MPH, PhD; Changchuan Jiang, MD, MPH; Qinjin Fan, MS, PhD; Xuesong Han, PhD; Zhiyuan Zheng, PhD; Joan L. Warren, PhD; K. Robin Yabroff, PhD, MBA; 2/21/25Conclusions: In a contemporary cohort of older Medicare decedents originally diagnosed with advanced breast, prostate, pancreatic, or lung cancer, we found that many patients continue to receive potentially aggressive interventions at EOL at the expense of supportive care services. To make meaningful improvements in the quality of EOL care, a multifaceted approach that addresses patient, physician, and system-level factors associated with persistent patterns of potentially aggressive care will be required. Editor's note: Though published just one week ago--February 21--this journal article is already being used extensively, as demonstrated in our posts on 2/24 and 2/25.

WesleyLife at Home expands services with palliative program Hospice News; by Kristin Easterling; 2/26/25 Des Moines, Iowa-based WesleyLife at Home has launched the area’s first home-based palliative care program. The organization is the fourth-largest home health provider in the state, according to Aaron Wheeler, vice president of home and community-based services. While analyzing their home health census, the organization identified a significant number of patients with chronic medical conditions who required an additional level of care.

Home health patients, caregivers lack understanding of palliative care, researchers find McKnights Long-Term Care News; by Adam Healy; 2/25/25 Home healthcare patients, caregivers and clinicians have significant knowledge gaps surrounding palliative care, which are contributing to poorer health outcomes for sick patients, according to a new study published in Home Healthcare Now. ... Healthcare providers, including home care agencies, are partially responsible for this limited public awareness, according to the researchers. The majority of survey participants agreed that it is the responsibility of doctors and nurse practitioners to inform seriously ill patients about palliative care. However, Medicare policy may be at the heart of this issue, Ashley Chastain, the study’s lead author, said.

‘Global problem’: Numerous factors, biases contribute to overtreatment at end of life Healio; by Josh Friedman; 2/26/25 Nathan I. Cherny, MD, has worked all around the world. At every stop — from Australia to Israel, and Memorial Sloan Kettering Cancer Center in between — he has seen people with cancer receive overly aggressive treatment at the end of life. ... In a review published in ESMO Open, Cherny and a cohort of multinational colleagues highlighted numerous reasons why overtreatment occurs among patients approaching the end of life, ... They listed more than 20 contributing factors, including desire for control of the cancer, denial and anger, family pressure and hope preservation. The two factors that contribute most to overtreatment are optimism bias and the “counterphobic determination to treat,” which involves clinicians having a difficult time introducing the suggestion of palliative care revert to offering further treatments, Cherny said. ... Responsibility for decisions does not need to fall solely on oncologists, Cherny added. Palliative care physicians, social workers, chaplains and others can be part of a team to assist patients with their choices. ... The number of patients who are overtreated differs at each institution. “Each institution has its own culture of care,” Cherny said. Editor's note: This article puts forth significant insights for all palliative and hospice clinicians, interdisciplinary teams, and palliative/hospice executive leaders. Apply Cherny's to your referral sources: "Each institution has its own culture of care." Apply these findings to your own palliative and hospice services. 

Patients without family or health care proxies face overtreatment or limbo in hospitals WHYY - PBS; by Maiken Scott; 2/24/25 A program matches unrepresented patients with volunteers who can make care decisions for them during health care crises. ... [Intensive care physician David] Oxman says unrepresented patients are a small, but growing group. Some have outlived their family members, or are estranged from them. Maybe they’ve moved a lot, sometimes substance use or homelessness plays a role. The situation is especially complicated with patients who have dementia, or who can’t communicate their wishes for other reasons. ... Most states have provisions where medical guardians and medical decision makers can be appointed by a court, but that takes a long time. In the meantime, a search for relatives begins. David Sontag, director of ethics for Beth Israel Lahey Health in Massachusetts, ... created a matching program where health care professionals volunteer to represent patients, not within their own hospital systems because that could cross ethical boundaries, but at other hospitals. “This is an opportunity for us to help some of the most vulnerable members of our communities, those who have nobody to speak for them when they can no longer speak for themselves. And that allows us to respect their autonomy throughout their lives,” he said.

[Argentina] Government dismantles National Cancer Institute’s Palliative Care Program Time.News; 2/24/25 As Javier Milei’s administration embarks on a controversial agenda aimed at reshaping Argentina’s public health system, a profound and alarming shift has taken place: the dismantling of the National Cancer Institute’s Palliative Care Program. This strategic move threatens the welfare of thousands of cancer patients and poses dire implications for the healthcare system at large.

New ACS research finds low uptake of supportive care at the end-of-life for patients with advanced cancer EurekAlert! - American Association for the Advancement of Science (AAAS); Peer-Reviewed Publication by American Cancer Society; 2/21/25  Despite considerable efforts to improve the quality of end-of-life care in the United States, a new retrospective study led by American Cancer Society (ACS) researchers revealed that close to half of patients with advanced cancer received potentially aggressive care at the end-of-life at the expense of supportive care. The findings are out today in the Journal of the American Medical Association (JAMA) Health Forum. ... Study results showed only one-quarter of patients diagnosed with advanced cancer received any palliative care in the last 6 months of life, and those who received it did so mainly in the month of death. Overall, 45% of decedents experienced any indicator of potentially aggressive care. There was an increase in the mean number of acute care visits (from 14.0 to 46.2 per 100 person-months), hospice use (from 6.6 to 73.9 per 100 person-months), palliative care (from 2.6 to 26.1 per 100 person-months), and advanced care planning (from 1.7 to 12.8 per 100 person-months) over the last 6 months of life. ...

Research priorities in neuropalliative care-A consensus statement from the International Neuropalliative Care SocietyJAMA Neurology; Winnie K. Lau, MD; Corey R. Fehnel, MD, MPH; Zachary A. Macchi, MD; Ambereen K. Mehta, MD, MPH; Manon Auffret, PharmD, PhD; Jori F. Bogetz, MD; Jori E. Fleisher, MD, MSCE; Jerome J. Graber, MD, MPH; Heather E. Leeper, MD, MS; Heena R. Manglani-Terranova, PhD; Susanne Muehlschlegel, MD, MPH; Emily L. Mroz, PhD; Elizabeth J. Pedowitz, MD; Usha Ramanathan, MSc, MD; Max Sarmet, SLP, MSc; Nathan A. Shlobin, BA; Leonard Sokol, MD; Susan Allyson Weeks, MA; Jiayun Xu, PhD, RN; Helen Bundy Medsger; Claire J. Creutzfeldt, MD; Ana-Maria Vranceanu, PhD; Darin B. Zahuranec, MD, MS; David Y. Hwang, MD; 2/25The International Neuropalliative Care Society Research Committee convened an interdisciplinary panel of experts, including clinicians, scientists, people with neurologic disease, and care partners, to identify priority research areas for the advancement of neuropalliative care as a field. Three priority areas highlighted in this review include (1) patient- and care partner–centered symptoms and outcomes specific to neurologic illness and tools for their assessment, (2) development of effective neuropalliative care interventions and delivery models, and (3) methods to support the ability to foster, deliver, and measure goal-concordant care over time.

Improving quality of life and end-of-life care: Standardizing goals of care notes in EHRs EurekAlert! - American Association for the Advancement of Science (AAAS), Indianapolis, IN; Regenstrief  Institute, peer-reviewed publication; 2/19/25 ... A new study by researchers from Regenstrief Institute, the Indiana University School of Medicine and Indiana University Health presents the standardized goals of care note they developed, deployed and evaluated as a quality improvement initiative at IU Health, a large, statewide healthcare system. ... The study authors report:

Addressing overtreatment in end-of-life cancer care Medscape; by David J. Kerr, CBE, MD, DSc; 2/19/25 ... What do we mean by overtreatment? This means that many patients who are approaching the end of life receive treatments, like directed anticancer therapies, that are unlikely to provide clinically meaningful benefits and may do more harm than good. This is an expression that I use often in the clinic when I'm explaining to patients that we have reached the end of the road in active interventions, such as chemotherapeutic drugs, that will do more harm than good. It doesn't stop us from doing our very best to look after patients. We focus on improving the quality of life and maintaining that for as long as we can, while continuing to care and look after the patients. ... Overtreatment may even, one would argue, accelerate death when you consider those 1% or 2% mortality rates that can be associated with some treatments that we offer. ...

An interview with Clinical Psychologist (retired) Johanne de Montigny, M.A.Ps. ehospice; interview between Dr. Stefanie Gingras and Johnne de Montigny; 2/14/25 Ahead of her February 19, 2025 lecture entitled “What I’ve learned about accompaniment, death and bereavement: 29 years of psychological services at the heart of an MUHC care team (1986-2015)”, part of the McGill National Grand Rounds programme, Johanne de Montigny shared her thoughts with Program Director and palliative care physician Dr. Stéfanie Gingras.Dr. Stéfanie Gingras (SG): How did you first become interested in the field of palliative care?Johanne de Montigny (JdM): It was a very profound and sudden experience where I almost died that guided me in this choice. I survived a plane crash, in which 17 people (out of 24) died. After this event, I asked myself what I was going to do with my life. For me, that meant choosing a profession that would be meaningful. After returning to school to study psychology, I chose to become a palliative care psychologist. After being confronted with sudden death, I wanted to understand how people reacted when they learned that they were going to die, that they still had time, and how to live with it. ... In those moments, I remembered that before I died – because I thought I was going to die – the young flight attendant who, in the space of a minute before the crash, had managed to help us contain the shock and give us some hope. She told us, “Whatever happens, we’re together and we’re going to get through this together.” That one relational minute made all the difference. It enabled us, I believe, to survive psychically before dying physically. She was my first carer just before she died. ... As for the family, what was most striking for me was the realization that the end of life is a time of unparalleled intimacy. Editor's note: This rich life-reflection provides powerful insights in light of many recent plane tragedies.