Literature Review

Provider perspectives on implementation of adult community-based palliative care: A scoping reviewMedical Care Research and Review; Nicole Dussault, Dorian Ho, Haripriya Dukkipati, Judith B. Vick, Lesley A. Skalla, Jessica Ma, Christopher A. Jones, Brystana G. Kaufman; 1/25While community-based palliative care (CBPC) programs have been expanding, there remain important obstacles to widespread use. Since provider perspectives on CBPC remain underexplored, we conducted a scoping review to summarize provider perspectives regarding barriers and facilitators to implementation of adult CBPC in the United States. At the provider level, barriers included misperceptions of palliative care (PC) by referring providers and poor communication, while facilitators included multidisciplinary teams and referring provider education. At the organizational level, time constraints were barriers, while leadership buy-in and co-located clinics were facilitators. At the external environment level, limited PC workforce and inadequate reimbursement were barriers. Our findings suggest that efforts aimed at scaling CBPC must address factors at the provider, organizational, and policy levels.

The Alliance celebrates the Dole Act becoming law, protecting burial benefits for veteransNational Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 1/7/25 The National Alliance for Care at Home (the Alliance) issued the following statement in response to President Biden signing S. 141, the Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act, into law on Thursday, January 2. This landmark legislation includes Section 301, Gerald’s Law, which addresses a critical gap in benefits for Veterans. Gerald’s Law ensures that families of terminally-ill Veterans receiving Veterans Affairs (VA)-furnished hospice care—whether at home, in a nursing home, or in another non-VA setting—retain access to their full VA burial allowance. “We are deeply grateful for the bipartisan support of Gerald’s Law and its inclusion in the Dole Act,” said Dr. Steve Landers, CEO for the Alliance. “This legislation ensures that Veterans and their families can choose hospice care in the setting that best meets their needs without risking the loss of crucial burial benefits. We thank Senators Moran, Tester, and Hassan, Representatives Ciscomani, Bost, Brownley, and Takano, and many others for their leadership, as well as President Biden for signing this important bill into law.”

Family advocates for hospice care, says it doesn't always mean end-of-life: Highlights case of the late Former President Jimmy Carter who spent nearly 2 years in hospice CBS WTKR 3, Hampton Roads | Northeast NC; by Jay Greene; 12/20/24 Dana Romano's mom, Marilyn, headed home from the Dozoretz Hospice House of Hampton Roads in Virginia Beach on Monday evening after spending a few days in respite care while her family was out of town. "The whole reason not to have my mom in a facility is we want her with us. But when you're doing long periods of time, every once in a while, you need a break, so having a place where you know they're going to take care of her and treat her like, almost like family," Dana said. "We kind of look at this more like a resort than a hospice." ... When at home Marilyn receives hospice care, but it's not because she needs care, the Romano's said. It's because she needs supervision. ... The family told News 3's Jay Greene this is a case where hospice does not mean end-of-life. It actually helped alleviate some stress. ... The Romano's told News 3's Jay Greene hospice ["has no time limit"] is all about extending life as comfortably as possible, citing Former President Jimmy Carter who died at the age of 100 this weekend.Editor's note: These misunderstandings by the family about hospice care is both alarming and expected. Throughout Jimmy Carter's extended hospice Length Of Stay (LOS), far too many hospice organizations misused messaging for its marketing purposes. We have addressed this discrepancy in a dozen posts throughout the year. Click here for the CMS "Face-to-Face Requirement Affecting Hospice Recertification." Disclaimer: We do not specifics about what this hospice communicated with this family. We simply refer readers to this as publicly reported news story.

Now open: VITAS Healthcare inpatient hospice unit in Fort Worth South Florida Hospital News and Healthcare Report; by cfelixcpa; 1/3/25Easier access to compassionate end-of-life care is now available for patients and families in Fort Worth and surrounding communities. The new freestanding VITAS Healthcare Inpatient Hospice Unit (IPU), located within five miles of the medical district, provides high-quality hospice services in a homelike environment for patients nearing the end of life. The IPU is expected to care for more than 500 patients each year, particularly those whose pain and symptoms cannot be managed effectively at home. A grand opening celebration was held to commemorate the addition to the Fort Worth community. 

Current challenges in neurocritical care: A narrative reviewWorld Neurosurgery; Safa Kaleem, William T. Harris II, Stephanie Oh, Judy H. Ch'ang; 1/25Neurocritical care as a field aims to treat patients who are neurologically critically ill due to a variety of pathologies. As a recently developed subspecialty, the field faces challenges, several of which are outlined in this review ... [including confusion around] brain death testing or the diagnosis of brain death itself ... Given these difficult scenarios encountered in the neuro-ICU, conversations with patients’ decision-makers are often done with the assistance of palliative care services ... the most common reasons for palliative care consultation in the neuro-ICU were discussing prognosis, eliciting patient and family values, understanding medical options, and identifying conflict. Collaboration with hospital chaplains and palliative care services can be helpful, but cultural humility also needs to be a priority for neurocritical care providers to be able to navigate difficult conversations.

Jimmy Carter delivered a positive message about hospice care Atlanta Journal and Constitution; by Shelia Poole and Ariel Hart; 1/1/25Hospice advocates said the end-of-life journey of former President Jimmy Carter was a “powerful” message to terminally ill patients and their families about the benefits of hospice care. Carter, the nation’s 39th president, died Sunday at his home in Plains after being in home hospice care for 22 months. “It’s pretty remarkable that he got to celebrate his 100th birthday, he got to vote and, as I understand, it was important to him that he was able to do these things with the support of hospice,” said Dr. Vicki Jackson, president of the board of the American Academy of Hospice and Palliative Medicine. “It was powerful.”A day after Carter’s death was announced, Jackson said it was helpful to have someone as notable as a former president to be open about his hospice care during the later stages of his life. During his almost two years of home hospice care, Carter helped raise awareness about the service, which focuses on comfort of the patient and support for both the patient and the family.Notable mentions: Dr. Vicki Jackson, president of the board of the American Academy of Hospice and Palliative Medicine; Jacqueline Lopez-Devine, Gentiva’s chief clinical officer; Megan Friedman, Gentiva spokesperson; Rev. Tony Lowden, Carter’s personal pastor; Amy Tucci, president of the Hospice Foundation of America; Dr. Tammie E. Quest, director for Emory University’s Palliative Care Center and a professor at Emory University’s School of Medicine; Dr. Folashade Omole, the chair of the Department of Family Medicine at the Morehouse School of Medicine; Ben Marcantonio, the National Alliance for Care at Home.

[Cure] Top palliative care stories from 2024 Cure; by Alex Biese; 12/28/24 This year, CURE® worked to provide education and insight that underscored the importance of palliative care in cancer treatment. Early integration of palliative care, whether through in-person visits, telehealth or ongoing emotional support, can make a significant difference in a patient's quality of life. Here are some of the top articles on the topic of palliative care from 2024.

Muslim community-engaged research highlights Muslim Americans' end-of-life-healthcare gaps and needs WisconsinMuslimJournal.org; by Sandra Whitehead; 12/20/24 Few Muslim Americans use hospice care, despite its posited benefits. A multi-sectoral team of academicians and community leaders in southeastern Wisconsin decided to find out why. ... Muslims are one of the fastest-growing religious communities in the United States, numbering between 3 to 5 million, with projections it will double by 2050. “With an aging Muslim population, there is a growing need for specialized healthcare services like hospice and palliative care,” the team’s research explains. ... Through a qualitative descriptive study with a Muslim patient and 10 family caregivers, the research team identified their perceptions of hospice care, ethical concerns and experiences. Among their varied perceptions, many saw it as useful only in the last hours of life. Participants also had ethical concerns about the use of sedative medication and with cessation of feeding terminally ill patients. Some had concerns about how hospice care might lead to unnecessary interventions or even hasten death. ...  The team is developing an informational resource, Islamic Bioethical Considerations for the End of Life: A Guide for Muslim Americans, to help Muslims who struggle when thinking about death and dying. 

Congress extends hospice telehealth flexibilities Hospice News; by Jim Parker; 12/21/24 Congress has extended the pandemic-era telehealth flexibilities through March 14, 2025. Early Saturday, legislators approved a continuing resolution to fund the government and avoid a shutdown. The bill contained language to extend the flexibilities, which includes the ability to perform face-to-face recertifications via telehealth. They were originally slated to expire on Dec. 31. The extension is a win for health care providers, including hospices, who have come to rely heavily on virtual services during the past five years.   

House of Goshen makes history as Chicago’s first black-owned independent inpatient hospice house G20 News Today, Flossmoor, IL; 12/21/24 House of Goshen, a state-of-the-art inpatient hospice facility and the first Black-owned independent hospice center in the Chicago Southland area, is now officially accepting patients. Located at 19810 Governors Highway in Flossmoor, the center represents a pivotal advancement in equitable, compassionate end-of-life care in Chicagoland, the South Suburbs and beyond. The 14,000-square-foot facility offers 14 private suites designed to provide comfort, dignity, and peace for patients and their families. ... “Our goal is to create a sanctuary where every patient and family member feels supported, seen, and cared for,” said Sade Bello, co-founder of House of Goshen. “Being the first Black-owned hospice center in the region comes with immense pride and responsibility. We are committed to setting a standard of care that reflects the diversity and humanity of the communities we serve.”

Palliative care, mental health services underutilized in pancreatic cancer Healio; by Jennifer Byrne; 12/19/24 Individuals with pancreatic cancer underutilized palliative care and mental health services, according to a retrospective analysis. ... Researchers from Saint Louis University used electronic health record data from Optum’s Integrated Claims-Clinical Data set to identify 4,029 patients with newly diagnosed pancreatic cancer. The investigators then used ICD-9/10 codes to identify subsequent diagnoses of anxiety and depression, as well as palliative care consultations. ... Results showed higher prevalence of anxiety (33.9% vs. 22.8%) and depression (36.2% vs. 23.2%) among patients who had palliative care consultations than those who did not have documented consultations. ... Healio: Did any of your findings surprise you? Divya S. Subramaniam, PhD, MPH: It was unexpected to see that palliative care consultations, despite identifying higher levels of anxiety and depression, did not increase treatment rates for these mental health conditions. This suggests mental health might not yet be a central focus in palliative consultations, which often concentrate on managing physical symptoms.

National Alliance for Care at Home and Transcend Strategy Group publish Rural American Hospice Insights Report National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 12/19/24The National Alliance for Care at Home (the Alliance) and Transcend Strategy Group published the results of new research exploring perceptions of hospice care among rural and small-town communities. This survey of 400 people is part of the Alliance’s commitment to health equity and to breaking down barriers to accessing hospice and home care through knowledge sharing, data collection, and collaborative discussion. Along with key research findings, the Rural American Hospice Insights report offers recommendations for hospice providers to help increase understanding of hospice care and help overcome barriers to access. Key findings and recommendations include:

Congress finalizes sweeping bill to help veteran caregivers Military Times; by Leo Shane III; 12/16/24 House lawmakers on Monday finalized a sweeping veterans bill to expand caregiver benefits for elderly and infirm veterans and update medical options for veterans outside the department’s health care system, sending the legislative package to the White House to become law. The legislation was originally passed by the chamber last month but had to be reapproved this week after technical changes were added by the Senate last week.