Literature Review

Researchers raise concerns about the financial sector's rising role in US illness care Medical Xpress; by Mary Ann Liebert, Inc; 10/16/24 The authors of a new article in Journal of Palliative Medicine state that the "growing role of the financial sector in home health and hospice, a reflection of larger trends in U.S. health care, is concerning and has major implications for care quality unless reforms are undertaken." Co-authors Lauren Hunt, Ph.D., RN, FN, with the University of California, San Francisco, and R. Sean Morrison, MD, with the Icahn School of Medicine at Mount Sinai in New York, observe that home health and hospice began as nonprofit organizations with close ties to their communities. However, the overwhelming majority are now for-profit entities, many of which have become targets for private equity buyouts. The authors note that "big business's emphasis on maximizing profit can be at odds with patient welfare. Indeed, a substantial body of evidence now demonstrates that care quality is consistently worse in for-profits as compared to nonprofits," they state. The authors further express concern that "pressure to achieve high returns on very short-term time horizons may conflict with the need for longer-term investments in quality, training, and staffing, thus reducing care quality.

The daily balancing act of value-based cancer care The American Journal of Managed Care (AJMC); by Laura Joszt, MA; 10/14/24 In value-based care, there’s a daily balancing act to achieve quality outcomes, cost reduction, and patient care improvements, explained Stuart Staggs, vice president of transformation, quality, and shared services for The US Oncology Network (Network). At the Institute for Value-Based Medicine event, cohosted by The American Journal of Managed Care (AJMC) and Minnesota Oncology, Staggs kicked it off with what he called a “practical look at value-based care.” He highlighted 4 main areas: quality, improvement, adoption, and cost. ... The area of improvement that the Network wanted to focus on was advanced care planning and better supporting and engaging patients and their families around hospice and life support. During the OCM, the Network better engaged patients and families around hospice care and encouraged practices to have difficult conversations. Not only does this improve patient experience by providing them the end-of-life care that they want, but there is also a cost factor. Patients who don’t receive hospice care spend significantly more in the last 30 to 60 days, Staggs said.

Integration of palliative care in the management of multiple chronic conditions: An expert consensus paper with policy implications George Washington University; by Kim Kuebler, DNP, ANP-BC, FAAN, Todd Monroe, PhD, RN, FAAN, Richard Ricciardi, PhD, CRNP, FAAN, Cheryl Westlake, PhD, ACNS-BC, FAAN, Matthew Sorenson, PhD, ANP-C, FAAN, Jane Pederson, MD, MS, Michael Neft, PhD, CRNA, FAAN, Sandra A. Mitchell, PhD, CRNP, FAAN, Kathryn Daniel, PhD, AGNP, FAAN, Susan De Santo-Madeya, PhD, APRN-CNS, FAAN, Susan Renda, DNP, ANP-BC, FAAN, Elizabeth Henneman, PhD, RN, FAAN, Eduardo Bruera, MD; 10/10/24 This paper was jointly developed from members of the American Academy of Nursing Expert Panels on Palliative and End of Life Care, Primary Care, Aging, Acute and Critical Care, and two expert physicians. Purpose: The overarching goal is to promote the integration of palliative care as symptom management into the primary care setting to transform care for patients living with multiple chronic conditions. ... Discussion: Earlier palliative interventions reduce disease exacerbation, prevent hospitalization, maintain physical functioning, and support health-related quality of life. Conclusion: This is a needed paradigm shift as the nation’s aging population escalates, Americans are living longer, and the healthcare costs for the nation are unprecedented. [Click on the title's link for this full description; then scroll down to "Download PDF" for the actual paper.]

Palliative care ‘ahead of the game’ in approaches to treating rare diseases Hospice News; by Holly Vossel; 10/9/24 Researchers are ramping up efforts to better understand the complex trajectories of rare diseases, with evidence mounting around palliative care’s potential to improve outcomes among those patients. The Center for Innovation & Value Research recently launched the second phase of its Rare Disease Project, an initiative aimed at examining the diverse range of these illnesses and the patients impacted by them. The project is designed to learn more about the innovative, person-centered care models that can help address common challenges that these patients and their caregivers face — including approaches that integrate palliative care services. A pivotal point of the research for palliative care providers is understanding how their services help support patients — physically, practically and spiritually — as their diseases progress, according to Rick Chapman, chief science officer at the Center for Innovation & Value Research, which is part of the National Health Council.

$1.6M grant to focus on nursing home units to reduce racial disparities in dementia care McKnights Long-Term Care News; by Jessica R. Towhey; 10/3/24 Emory University will use a $1.6 million, federal grant to investigate the role Alzheimer’s special care units play in reducing racial and ethnic disparities in dementia care within nursing homes. The research team will be led by Huiwen Xu, PhD, an associate professor in the university’s Nell Hodgson Woodruff School of Nursing, who specializes in gerontology and elder health. The four-year grant from the National Institute on Aging will analyze quality of life and improved health outcomes in the specialized care units, which the school’s press release said are available in only 14% of nursing homes nationwide. Xu’s team will examine the underlying causes of racial disparities for Black and Hispanic residents, who have limited access to the memory care units, the release said. 

Families value flexibility and compassion in end-of-life care for children with cancerOncology Nurse Advisor; by Megan Garlapow, PhD; 9/18/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, with the median preference score being neutral at 3.0 on a 5-point Likert scale, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.

As families searched, a Texas medical school cut up their loved ones NBC News, Dallas, TX; by Mike Hixenbaugh, John Schuppe, Susan Carroll, Catherine Allen, Bryan Gallion, Liz Kreutz and Nigel Chiwaya; 9/16/24 ... In the name of scientific advancement, clinical education and fiscal expediency, the bodies of the destitute in the Dallas-Fort Worth region have been routinely collected from hospital beds, nursing homes and homeless encampments and used for training or research without their consent — and often without the approval of any survivors, an NBC News investigation found. ... For months as NBC News reported this article, Health Science Center officials defended their practices, arguing that using unclaimed bodies was essential for training future doctors. But on Friday, after reporters shared detailed findings of this investigation, the center announced it was immediately suspending its body donation program and firing the officials who led it. The center said it was also hiring a consulting firm to investigate the program’s operations.

Rita and Alex Hillman Foundation announces $500,000 in funding for nine projects to improve serious illness and end of life care Globe Newswire; by Rita & Alex Hillman Foundation; 9/10/24 The Rita and Alex Hillman Foundation ... announced nine grants to support innovative, early-stage interventions that address the serious illness and end of life needs of marginalized populations. The $500,000 in funding, part of a collaborative effort with The Arthur Vining Davis Foundations, will advance nursing-driven initiatives that improve care for diverse populations and expand access to high-quality end of life services. ... This year’s grants demonstrate a commitment to the design, development, and delivery of better and more equitable care. The 2024 HSEI grant recipients are:

The Hastings Center awarded $1.5 million by PCORI to study organizational trustworthiness and community-engaged research  EurekAlert! AAAS; Susan Gilbert, The Hastings Center; 8/13/24 A research team at The Hastings Center has been approved for $1.5 million in funding by the Patient-Centered Outcomes Research Institute (PCORI) to study organizational trustworthiness as it relates to community-engaged research. Led by Virginia A. Brown, PhD, a research scholar at The Hastings Center, the study will be the first to investigate the role of organizational trustworthiness in shaping research engagement processes and outcomes. 

Loss of a loved one early in life may accelerate aging: StudyThe Hill - Health Care; by Miranda Nazzaro; 7/29/24 The experience of losing a loved one early in life could make a person age faster, according to a new study published Monday in the Journal of the American Medical Association. ... Losing a parent or sibling early in life can often be traumatic, causing mental health or cognitive issues, higher risks of heart disease and earlier mortality, researchers noted, adding repeated losses can increase the likelihood of heart disease, dementia or mortality. ... “Future research should focus on finding ways to reduce disproportionate losses among vulnerable groups. For those who experience loss, providing resources for coping and addressing the trauma is essential.”Editor's Note: Click here for the study, "Familial Loss of a Loved One and Biological Again: NIMHD Social Epigenomics Program." Calling all executive leaders who decide staffing and resources for your hospice's bereavement services: examine the long-term mission of your bereavement services for (1) children and teens, (2) young adults, (3) persons with racial and ethnic disparities. 

Why are some people happy when they are dying? StudyFinds; by The Conversation, Mattias Tranberg, Lund University; 7/18/24Simon Boas, who wrote a candid account of living with cancer, passed away on July 15 at the age of 47. In a recent BBC interview, the former aid worker told the reporter: “My pain is under control and I’m terribly happy – it sounds weird to say, but I’m as happy as I’ve ever been in my life.” It may seem odd that a person could be happy as the end draws near, but in my experience as a clinical psychologist working with people at the end of their lives, it’s not that uncommon. There is quite a lot of research suggesting that fear of death is at the unconscious center of being human. William James, an American philosopher, called the knowledge that we must die “the worm at the core” of the human condition. But a study in Psychological Science shows that people nearing death use more positive language to describe their experience than those who just imagine death. This suggests that the experience of dying is more pleasant – or, at least, less unpleasant – than we might picture it.

Targeted palliative care enhances outcomes in advanced cancer Physician's Weekly; 7/15/24 ... Excessive polypharmacy is common in patients with cancer, especially older adults. According to a 2023 study published in Cancer, up to 80% of older patients take five or more medications, and up to 40% take 10 or more. Patients who receive numerous medications as part of supportive care may be at increased risk for potentially inappropriate medications and drug-drug interactions, which could impact their QOL. The study authors emphasized the importance of meaningful screening and interventional tools to optimize the use of medications for palliative care in these patients. In a more recent study published in the Journal of Clinical Oncology, Giusti Raffaele, MD, and colleagues aimed to streamline pharmacotherapy by targeting the most impactful symptom.

Telehealth can drive more meaningful serious illness conversations in MDS, AML AJMC - American Journal of Managed Care; by AJMC contributor; 7/10/24 Using telehealth to have conversations about serious illnesses with patients may help increase clinician confidence in having these types of conversations, suggest findings from a small pilot study. Researchers collected feedback from 20 clinicians implementing a telehealth serious illness conversation with their patients with acute myeloid leukemia and myelodysplastic syndrome (MDS). The group found the intervention was considered simple and easy, and helped clinicians better understand the unique needs of their patients at end of life. The findings were published in JMIR Formative Research.