Literature Review

Hospice use among Medicare beneficiaries with Parkinson Disease and Dementia with Lewy bodiesJAMA Network Open; Meredith Bock, MD; Siqi Gan, MPH; Melissa Aldridge, PhD; Krista L. Harrison, PhD; Kristine Yaffe, MD; Alexander K. Smith, MD; John Boscardin, PhD; Lauren J. Hunt, PhD; 3/25Lewy body disease (LBD)—an umbrella term that includes Parkinson disease (PD) and dementia with Lewy bodies (DLB)—describes progressive, incurable neurodegenerative disorders. Parkinson disease is the second most common neurodegenerative disorder after Alzheimer disease (AD) and is the fastest growing neurologic disorder in the world.In this cohort study of ... Medicare beneficiaries enrolled in hospice between 2010 and 2020, hospice enrollees with both PD and DLB were less likely to be disenrolled due to extended prognosis than those with AD. Enrollees with PD—but not DLB–were more likely to have longer lengths of stay and revoke hospice. The findings of this study suggest a higher likelihood of revocation of hospice care in PD, raise important questions about their unmet needs in hospice, and highlight the need to disaggregate dementia subtypes for policy analysis. 

2024 Alzheimer's Disease Facts and Figures: Mapping a better future for dementia care navigation Alzheimer's Association, Chicago, IL; www.alz.org; 2024 2024 Alzheimer’s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer’s disease, the most common cause of dementia. Background and context for interpretation of the data are contained in the Overview. Additional sections address prevalence, mortality and morbidity, caregiving, the dementia care workforce, and the use and costs of health care and services. The Special Report provides a comprehensive look into dementia care navigation, revealing significant insights into the experiences and challenges faced by caregivers and health care workers in helping people living with Alzheimer’s or other dementia navigate the health care system. [Click on the title's link to access and download this 149-page PDF]

Visiting nurses discontinue services in 21 Southern Vermont townsBennington Banner, Brattleboro, VT; by Bob Audette; 3/12/25 Visiting Nurse and Hospice of Vermont and New Hampshire, located in White River Junction, will relinquish its designation as the home health agency and discontinue all home health and hospice services in most of Windham County and some of Bennington County, effective April 15. While many people learned about the discontinuance at Town Meeting Day, when line item donations to the organization were deleted, the organization has been planning this move since 2023. "This is all because of work force," said Johanna Belliveau, president and chief executive officer. In 2023, the Visiting Nurses requested the de-designation due to increases in expenses related to paying traveling nurses to service many of the towns in Windham County, she said. Since that request was made, Bayada has been providing home health care and hospice services to Windham County. 

Empath Health CEO to Congress: Invest in home-based care Hospice News; by Jim Parker; 3/11/25The federal government must invest further in home-based care, Empath Health CEO Jonathan Fleece told lawmakers at a hearing with the U.S. House of Representatives Ways & Means Health Subcommittee. leece was among several post-acute care leaders who appeared at the hearing, representing home health, hospice, skilled nursing facilities, rehabilitation hospitals and other stakeholders. In opening remarks, Fleece pointed to the benefits of home-based care for patients and families, as well as the sector’s ability to reduce health care costs. 

How Houston Methodist’s ACO reduced its end-of-life spending by nearly 20% MedCity News - Hospitals; by Katie Adams; March 10, 2025 Houston Methodist Coordinate Care is reducing costs through a partnership with Koda Health, a digital platform that guides patients through their end-of-life choices. Preliminary findings show the technology resulted in a 19% reduction in the total cost of care for patients at the end of their life, which equals nearly $9,000 in savings per patient. ... The ACO has been working with Koda Health for more than three years — and it is saving money by getting patients more involved in their end-of-life care plan.

Research brief: Medicare Advantage Special Needs Plans linked to use of inferior hospice carePenn LDI - Leonard Davis Institute of Health Economics; 3/11/25 Beneficiaries of Medicare Advantage special needs plans are significantly more likely to use lower-quality hospices than beneficiaries of other Medicare plans. These disparities may result from the geographic availability of high-quality hospices or the referrals that beneficiaries receive from their plans’ contracted hospitals and nursing homes. The results support incentivizing referrals to high-quality hospices and improving consumer information about hospice quality.

J-Sei Home closes after 30 years, leaving Bay Area Japanese seniors in need KQED, San Francisco, CA; by Cecilia Lei; 3/10/25 ... For decades, Bay Area Japanese American families have sought culturally sensitive senior care facilities like J-Sei Home for aging loved ones. Community members said that about a decade ago, there were approximately 10 Japanese senior care homes in the region. Today, that number has declined by about half. The most recent closure came in January, when the last residents of J-Sei Home moved out, and the facility permanently closed its doors after 30 years of operation. A majority of the displaced residents were Japanese Americans in their 90s and had cognitive impairment. ... They had tender caregivers who spoke Japanese. They ate familiar comfort foods like miso soup and pickled vegetables, and they participated in daily activities such as drum circles and singing Japanese songs. ...

How to start the hospice conversation: Judy Bartel Cleveland.com, Cleveland, OH; by Guest columnist Judy Bartel, chief clinical officer for Hospice of the Western Reserve; 3/9/25 Discussing hospice care with a loved one is one of life’s most delicate and emotional conversations. For many, the word “hospice” evokes fear -- fear of finality, of giving up, of losing hope. But the truth is, hospice isn’t about giving up; it’s about focusing on what matters most -- comfort, dignity and quality of life. ...

At the end of life, doctors’ actions and patients’ wishes may be misaligned, according to a Rutgers Health study Rutgers; by Greg Bruno; 2/28/25 For terminally ill cancer patients, the final days of life are immensely personal, having the choice to continue cancer treatments, or to stop treatments and prioritize a more comfortable passing. What a patient wants, however, isn’t always what they receive, according to a Rutgers Health study published in the journal Cancer. “A patient's end of life is often not a reflection of what they want, but rather, who their oncologist happens to be,” said Login S. George, a health services researcher at the Rutgers Institute for Health, Health Care Policy and Aging Research, and lead author of the national study. “The data doesn’t indicate patient-centered treatment decisions, but rather, more habitual or default ways of treating patients,” says George, who is also a member of the Cancer Prevention and Control Program at Rutgers Cancer Institute, the state’s only National Cancer Institute-designated Comprehensive Cancer Center. ... [Click on the title's link for more statistics, insights, and recommendations.]

Report finds those with Parkinson’s have unmet hospice needsMcKnights Long-Term Care News; by Kristen Fischer; 3/6/25 Hospice use varies depending on whether a person has Parkinson’s disease, Lewy body dementia or Alzheimer’s disease and those with Parkinson’s may have more unmet needs, a new study finds. Researchers evaluated data on 11,327,324 Medicare beneficiaries enrolled in hospice between 2010 and 2020 as part of their study, which was published Tuesday in JAMA Network Open. ... Hospice enrollees who had Parkinson’s disease and dementia with Lewy bodies were less likely to be disenrolled from hospice due to extended prognosis compared to those with Alzheimer’s disease. People who had Parkinson’s disease but not dementia with Lewy bodies were more apt to have longer stays over 180 days and turn hospice away compared to those with Alzheimer’s disease. (Short stays were defined as those less than seven days.)

Children and family bereavement needs on the rise at Hospice of Santa Barbara Santa Barbara Independent, Santa Barbara, CA; by Hospice of Santa Barbara; 3/5/25 It’s not just adults who are impacted by grief and loss in our community. Children are as well. One in five children will experience the death of someone close to them by age 18, and one in twenty children will experience the death of one or both parents before reaching adulthood. Although death and grief are inevitable parts of life, these statistics highlight just how many children are impacted. Children are especially vulnerable when they lose a close loved one, and without professional support, grief can be especially paralyzing and overwhelming. ... Hospice of Santa Barbara’s Children and Family Services program provides free professional support and coping tools for children, teens and their families ... HSB is active in local campuses, providing professional weekly support groups from elementary to college age students. On-campus counseling services provide a vital space for open communication, support and the development of coping skills.Editor's note: What specialized child, teen and family bereavement services are you providing? Missing? What more can you do, with life-changing outcomes for those you serve?

A hospice for kids: Grinnell family eyes Iowa City for state's first pediatric hospice Des Moines Register, Des Moines, IA; by Richard Hakes; 3/6/25 A Grinnell couple’s dream to help other families after they lost their young son to a rare disease took a big step forward in Iowa City just a few days ago. Shanna and Curtis Sieck’s non-profit called Mason’s Light House has signed a contract for land just west of the Johnson County Historic Poor Farm as the initial step toward building Iowa’s first pediatric hospice. Named in honor of their son, the facility is expected to be only the fourth in the United States. ... Mason’s Light House would accept up to seven children for both hospice and respite care, provide family suites and be fully staffed with a pediatric palliative care team of nurses, social workers, therapists and other specialists in the field. There would be no cost to patients and their families who use it.

Galleria Dallas partners with Visiting Nurse Association of Texas for March gallery wall exhibit Addison - The Magazine of the North Dallas Corridor; by Erin Uhl; 3/4/25 Each month, Galleria Dallas spotlights an important organization or cause on a Gallery Wall in the center through its Galleria Gives program. During March, the partner organization is the Visiting Nurse Association of Texas. The exhibit, which will be on display beginning Monday, March 3, will feature information on the Visiting Nurse Association’s Meals on Wheels, Hospice Care and Palliative Care programs. ...  “Partnering with Galleria Dallas and its Galleria Gives program gives us the opportunity to connect with thousands of North Texans, sharing our call to action to Give, Learn, Serve,” said Katherine Krause, president and CEO of the Visiting Nurse Association of Texas. ... During the exhibit, the VNA will host several events at Galleria Dallas. The first, Make Cards & Spread Joy, will allow guests to create colorful, one-of-a-kind handmade cards for Meals on Wheels recipients ...