Literature Review

For young adults, caregiving isn't just hard. It can shape you for life. National Public Radio - CAI - Local NPR for the Cape, Coast & Islands; by Kat McGown; 12/23/24 ... There are days when Jordyn Glick, 27, can't eat or drink at all. She gets so tired and weak she can barely stand up. She has gastroparesis, where food stalls out in her stomach and doesn't get digested. It comes with unpredictable bouts of nausea, periods of agony in her guts, and malnutrition. ... Dakota Heath, her 26-year-old boyfriend of four years, is her watchman, "always picking up on the small things," he says. He's on alert for her next flareup, the kind that can leave her bedridden for a week. ... Young caregivers have always been there, doing all the same things that adults do — ... About one-quarter of all family caregivers are between 18 and 36, according to the National Alliance for Caregiving. One survey suggests that almost half of them are men. They're more likely to be Latino or Black; a survey in 2018 found that only 17% were white. They've just been invisible. "They fall into every potential crack that exists," says Melinda Kavanaugh, a professor of social work at the University of Wisconsin Milwaukee who is one of the few researchers who study this population. In terms of resources, "Nothing is targeted for a 22-year-old. Nothing."

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.”

Mom, 26, dies days after choosing to enter hospice following 13 years of living with kidney failure (exclusive) People; by Zoey Lyttle; 12/18/24 Though she left behind a 4-year-old daughter, Sara Long told PEOPLE her feelings about death were "more certain" than they'd ever been when she started end-of-life care. “I think a lot of people spend a lot of time thinking about what it means to have a good life. And don't get me wrong, I did that too,” Sara Long, 26, told PEOPLE over the phone just shy of a week before she died at the hospice facility into which she had just recently moved. ... Long said she’s spent “the last two or three years” deliberating about her idea of a “good death.” She decided that it wasn’t just about how she would experience these last expected few weeks of her life in hospice. What Long really wanted was to be surrounded by her most precious loved ones — including her husband Justin, 32, and their 4-year-old daughter Riley Jean — but she didn't want them to watch her die while intubated and attached to hospital equipment as she was half of her life. “I just feel like if I pushed it any harder, then I was going to get to a place where it was going to be outside of my control,” said the mom of one. “I was going to wind up dying in a hospital alone, afraid, full of tubes, scared. My daughter wouldn't be able to be part of the process, and it would just be really lonely, and that's really not the goal.” Detached from the familiar yet foreign medical equipment, Long told PEOPLE she was freed from fear knowing she would only survive another couple of weeks in hospice. (She died with a week less than anticipated.) Editor's note: This another follow-up post to this profound young woman's story that we post on 

VITAS Healthcare unveils inpatient hospice unit at Lee Memorial Hospital South Florida Hospital News and Healthcare Report, fort Myers, FL; by cfelixcpa; 12/16/24 Residents of Lee County now have access to dedicated end-of-life care at the new VITAS Healthcare Inpatient Hospice Unit at Lee Memorial Hospital, offering expert, patient-centered hospice services in the comfort of a homelike setting. This inpatient unit (IPU) is the only hospital-based hospice facility in the county and is the first VITAS IPU in Lee County and second in Southwest Florida. It is expected to serve more than 400 patients annually. ... The VITAS hospice unit at Lee Memorial features eight private patient rooms with internet access, flatscreen TVs, private bathrooms and overnight accommodations for loved ones. A shared family room provides space for visiting guests, and children’s activities keep little ones occupied.

Hospice utilization rebounds to pre-pandemic levels, but fraud casts a shadow Hospice News; by Jim Parker; 12/17/24 The nation’s hospice utilization rate among Medicare decedents has once again surpassed 50%, for the first time since the pandemic. However, fraud issues in the space create questions around the quality of care patients are receiving. Hospice utilization reached 51.7% in 2023, up more than two percentage points from the prior year, according to recent data from the Medicare Payment Advisory Commission (MedPAC). This is the highest rate since 2019. MedPAC observed increases in utilization across the board, even when stratified into subgroups by age, sex, race and rural or urban location. ... Despite these positive trends, an influx of new hospices continued in states considered hotbeds for Medicare fraud, including Arizona, California, Nevada and Texas. Many of these new additions came in areas where additional hospices were likely not necessary based on the needs of the patient population. Georgia also saw a large spate of new providers emerge in 2023.

Anvoi Hospice now serving Tangipahoa Parish The Daily Star, Hammond, LA; 12/13/24 Anvoi Hospice has announced that they are bringing their specialized hospice care to Hammond, Ponchatoula and the surrounding area. Their goal is to provide care for the patient and the whole family with an emphasis on dignity, compassion and comfort, according to a press release. Anvoi Hospice was founded in 2013 and serves the Greater New Orleans area, including Tangipahoa and St. Tammany parishes. “We are honored to bring our services to this community,” said Angelique Richardson, Anvoi Health Care CEO. ... Anvoi Hospice has been named one of the “Best Places to Work” by New Orleans City Business Magazine.

You heard that correctly: Scammers are committing hospice fraud Federal Trade Commission - Consumer Advice; by Kira Krown, Consumer Education Specialist; 12/13/24 Did someone reach out and offer free, in-home perks like cooking and cleaning in exchange for your Medicare number? Don’t give it. That could be a scammer trying to commit hospice fraud.Scammers are targeting older adults — with calls, texts, emails, fake ads, and even door-to-door visits — claiming they’ll set you up with services like free cooking, cleaning, and home health care. What they likely won’t tell you is how: They want to commit fraud by signing you up for Medicare hospice — that’s right, hospice — care. Then, they can bill Medicare for all kinds of services in your name. Here’s what to know: ..Editor's note: Share this crucial information information from the Federal Trade Commission with communities you serve, your employees, and your volunteers. 

Helping Korean Americans with end-of-life planning is her passion Penn Medicine News; by Daphne Sashin; 12/10/24 Eunice Park-Clinton, DNP, MSN, MBE, is standing before a crowd of Korean American senior citizens, and she wants to talk about the end of life. ... Park-Clinton, a nurse case manager in the Hospital of the University of Pennsylvania’s Emergency Department and an assistant nursing professor at West Chester University, is undeterred. Speaking in Korean, she takes a kind but frank approach as she walks the seniors through life-sustaining treatments they might be offered in their final days and the need to decide what they will—and won’t—want for a dignified end of life.  ... As a Korean American herself, Park-Clinton’s passion for culturally sensitive planning comes from her personal familiarity with the community and its norms. In her work as a nurse, she has personally witnessed older Korean and other Asian immigrants experience health disparities due to their lack of knowledge of the concept.

HSPN Staffing Summit: Leveraging technology for person-centered care Hospice News; by Sophie Knoelke; 12/9/24 This article is sponsored by CareXM. This article is based on a virtual discussion with Kathleen Benton, President and CEO of Hospice Savannah. ... Dr. Benton has a master’s degree in medical ethics and a doctorate in public health. She has offered and reviewed many publications relevant to the topics of palliative care, ethics, hospice, and communication. [Dr. Benton:] I was schooled in clinical ethics and really mediating ethical dilemmas in health care. Looking at, is this in the best interest of the patient? Are we truly following the patient’s wishes? Many of the dilemmas, I would say a good 90%, occur at the end of life. ... [At] the root of [really trending] cases was one missing element. That element was the lacking area of communication. What do I mean by that? I believe that health care does the worst job of probably all other areas of communicating with folks. We have really taken what it is to be human out of what it is to treat a patient and a person. [Click on the title's link to continue reading this insightful discussion.]

What adult children should know when discussing their parents’ end-of-life care StudyFinds; by StudyFindsStaff, reviewed by Christ Melore; 12/8/24 Talking about death can be difficult for anyone at any time. For adult children who need to know their parents’ final wishes, it can be excruciating. A new survey is revealing the stark disconnect between our beliefs and actions when it comes to end-of-life planning. While an overwhelming 90% of adults recognize the importance of these critical conversations, half have yet to take the first step with their closest loved ones. ... The numbers tell a revealing story. Twenty-six percent of respondents simply keep putting off the conversation, while 23% admit they don’t know how to approach the topic. Sixteen percent are outright scared to broach the subject, creating a wall of silence around a universal human experience. ... When people do open up, the conversations prove surprisingly rich and multifaceted.

From sleeping in cars to having an apartment: Season for Caring helps once-homeless families Austin American-Statesman; Austin, TX; by Nicole Villalpando; 12/8/24 When Thamairis Canales Yanez learned this year that she had been selected for the Austin-American Statesman's Season for Caring program, "what I did was thank God," she said. ... The 45-year-old and her 14-year-old daughter, Ivanna, came to the U.S. from Venezuela after Yanez's dental business was taken away by the government, and she feared for her daughter's life. She is trying to rebuild her life in America, but it has been difficult. At one point, she and Ivanna were living in her car. She has breast cancer that has spread to her brain. She is unable to work. Often when Season for Caring comes into the lives of the featured families, it is during one of their darkest times.  ...  "I have seen the impact on families," said Robin Clemons, chief development officer at Hospice Austin. "Imagine facing the end of life, and they can't pay their rent. (With Season for Caring funds) they don't have to worry about those types of needs. The stress for the caregiver, it relieves that burden."

Embracing well-being at the end of life Phaneuf Funeral Homes & Crematorium; by Phaneuf; 12/5/24At the 29th Annual Fall Hospice & Palliative Care Conference, Dr. Ira Byock delivered a thought-provoking keynote challenging the misconceptions surrounding hospice and palliative care and illuminating a brighter path forward for individuals, families, and caregivers. ... Far too often, hospice and palliative care services are seen as a last resort or equated with “giving up.” Dr. Byock pushed back against this notion, emphasizing that hospice and palliative care are not about death but about life. “Hospice and palliative care are about living as fully and as well as possible through the end of human life,” Dr. Byock said. Rather than signifying the end of healthcare options, palliative care provides comfort, dignity, and even joy for individuals facing life-limiting conditions. Dr. Byock shared that families often express relief and gratitude after beginning hospice care, lamenting that they hadn’t learned about it sooner. These experiences highlight a common issue: Hospice care is often introduced too late, preventing families and patients from reaping its full benefits. 

The ISNP opportunity for hospice providers  Hospice News; by Jim Parker; 12/5/24 Hospice providers can collaborate with institutional special needs Medicare Advantage plans (ISNP) to reach patients who reside in long-term care facilities. ISNPs restrict enrollment to MA eligible individuals who, for 90 days or longer, have had or are expected to need the level of services provided in a long-term care (LTC), skilled nursing facility, a LTC nursing facility, intermediate care facility for individuals with intellectual disabilities (ICF/IDD), or an inpatient psychiatric facility. The nonprofit senior services organization Empath Health, which operates several hospices, recently partnered with the MA organization American Health Plans to bring their services to ISNP-enrolled patients.