Literature Review

My mother and brother have terminal cancer. I'm worried I won't feel anything when they die. Business Insider; essay by Kimanzi Constable; 3/1/25 ... My brother was diagnosed with Cutaneous T-cell lymphoma (CTCL) three years ago, and my mother found out she had stage four lung cancer a year ago. I got a call earlier this year that the cancer was spreading, and I flew to spend time with them. I knew it would be hard seeing them battling late-stage cancer, but what I walked into was my brother in the Advanced Cancer Care Center, unable to move, and my mother wanting to hold an "end of life" planning meeting. It was worse than I anticipated. It was hard to see him not moving and the nurses having to help him do everything. My mother looked like she weighed 50 pounds ... I'm worried I won't feel anything when they pass away. ... I think it might be just another day when they pass away. I've been thinking — what does that say about me? Am I a bad person for not falling on the ground and losing it for over half of my family dying? Or is this nothingness an OK feeling due to the complicated relationship we've had most of my life? ... Editor's note: Leaders, welcome to the daily world of your clinicians, especially your social workers, chaplains, and grief counselors. Read this with openness to the normalcy of this author's conflicted relationships, emotions, thoughts, and empowered actions toward "not wanting to regret how I handled this opportunity to say goodbye more healthily."

Mobile hospital-at-home pilot to deliver care to rural patients Modern Healthcare; by Diane Eastabrook; 2/26/25  Mobile medical units will deliver hospital-at-home care to patients in rural communities as part of a five-year pilot program aimed at expanding healthcare access in underserved areas. The Advanced Research Projects Agency for Health recently awarded an undisclosed amount of funding to Boston’s Mass General Brigham, University of Utah’s Huntsman Cancer Institute and Kentwood, Michigan-based Homeward Health to develop programs that will extend hospital-level care to patients in remote communities using mobile platforms.

Medicaid health plans failing to pay hospices for nursing home room and board Hospice News; by Jim Parker; 3/3/25 ... Medi-Cal, California’s Medicaid program, is among the states that shifted management of its safety net health coverage to health plans. Under this system, Medi-Cal pays the health plans who then pass payments on to the providers. However, due to confusion among managed care plans that oversee Medicaid in most states, those hospices are not getting those dollars back, according to Craig Dresang,  CEO of YoloCares. This has caused hospices to lose thousands to millions of dollars in some cases. “Managed health care plans are saying they’re denying the claims, and they’re tying them up so that they age out. So the due date has passed and we can no longer bill,” Dresang told Hospice News. [Click on the title's link to continue reading.]

Bayada Home Health Care introduces first Director of Veterans Affairs HomeCare, Pennsauken Township, NJ; 2/28/25  As part of its ongoing commitment to U.S. veterans and their families, BAYADA announced the appointment of U.S. Army Veteran Ally O’Neal to director of Veterans Affairs, BAYADA Hospice. BAYADA created this new position, with the help of O’Neal, to ensure its hospice services are tailored to meet the unique physical, emotional and psychological needs of veterans and their families. As BAYADA director of Veterans Affairs, O’Neal will work collaboratively with clinicians, clinical educators, service providers, community organizations and veteran service agencies to enhance the quality of care and support provided to veteran patients and their families, something dear to O’Neal's heart. 

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.

North Texas doctor helps parents facing infant loss deal with the unimaginableCBS News - Texas; by Andrea Lucia, Lexi Salazar, Katie Standing; 2/25/25[Background story for parents Yvette and Thoms Ngo upon dealing with the news that their in-utero baby girl Zoe was diagnosed with Trisomy 13, would likely miscarry, or die soon after birth. Dr. Terri Weinman, their neonatologist offered rich palliative care interventions and support.] "When we met Dr. Weinman and her team the first time, she would say things like, 'So, what are we going to do when Zoey is here,' which changed my mindset completely," Yvette Ngo said. ... For the first time, the Ngos began to consider what Zoey's life, short as it might be, could look like. "It made us more comfortable with the situation, I mean as comfortable as you can be," Thomas Ngo said. "She just gave us hope." Zoey was born on April 18, 2024. She met her parents, her siblings and her grandparents. She was baptized. "They made us little crafts and mementos for us to take home, like footprints, really ways to help cherish Zoey's life," Yvette Ngo said. "They took her heartbeat and recorded it for us. Little things that we wouldn't necessarily think of." Zoey even had a chance to go home. But after 36 hours of life, Zoey passed away in her father's arms. The perinatal palliative care Zoey received remains rare. But for families like the Ngos, it provides a small sense of control when it's needed most. "Being able to plan so much in advance and think about all the different scenarios and how we wanted it," Yvette Ngo said. " I think, looking back on our time with Zoey..." "We wouldn't have done anything differently," Thomas Ngo said. Editor's note: Pair this with "Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing students," posted 2/24/25.

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.

Study shows end-of-life cancer care lacking for Medicare patients Vanderbilt University Medical Center (VUMC) News; by Tom Wilemon; 2/21/25 The study involved patients of diverse ethnic backgrounds age 66 or older who died from breast, prostate, pancreatic or lung cancers. Many Medicare patients with advanced cancer receive potentially aggressive treatment at the expense of supportive care, according to a study that analyzed Medicare records. The study, published Feb. 21 in JAMA Health Forum, examined the quality of end-of-life care among 33,744 Medicare decedents. ... Overall, claims records showed that 45% of the patients experienced potentially aggressive care (such as multiple acute care visits within days of death), while there was a low receipt of supportive care, such as palliative, hospice and advanced care planning in the last six months of life. While hospice care spiked to more than 70% during the month that death occurred, over 16% of patients spent less than 3 days in hospices. Moreover, receipt of advanced care planning and palliative care remained below 25%. Editor's note: Click here for the research article, "Contemporary Patterns of End-of-Life Care Among Medicare Beneficiaries With Advanced Cancer." Though this research was published just this past Friday February 21, 2025, multiple newsletters are posting it, highlighting different elements. 

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. ...