Literature Review

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.

Indianapolis Moms: How furry friends can help with grief and depression WISHTV.com, Indianapolis, IN: by Ashley Fowler; 10/9/24 Our four-legged friends can bring us laughter, joy, and love. But one Indianapolis woman says they can also help us heal. Roleen Demmings has written about her challenges with depression and grief after the death of her mother. ... “My mom was in hospice. She had cancer. My sister and I were her caretakers, and throughout that time, we noticed that we were gaining weight,” Demmings said. “We didn’t want to get out of bed; we had to force ourselves to and we realized the depression setting in even before she died.” She says she knew she needed to exercise more, eat better, and go to therapy, but then she found a non-traditional way of coping: a handsome Newfoundland/Poodle mix named Remy. “Those days where I didn’t want to get out of bed, I knew I had to walk him ...  He doesn’t understand depression, but, y’know, he’s really helped me with mine,” Demmings said. “While we were going through our sadness, he really was a light for us. I call him our lifeboat in the sea of depression.”

Helene will likely cause thousands of deaths over decades, study suggests USA Today; by Doyle Rice; 10/2/24 [Note the 10/2 date of this article. Helene's death toll is now 230+ and rising. Hurricane Milton's predictions were new.] A new study ... says that hurricanes and tropical storms are far deadlier than initial death tolls suggest. ... Overall, the death toll of a tropical cyclone may be a broader public health issue than previously thought, as disasters frequently trigger a domino effect of other threats to affected populations. ... Researchers found that these excess deaths were due to causes such as diabetes, suicide, sudden infant death syndrome or another cause that was not recorded. Cardiovascular disease was the next most common cause, followed by cancer. Official government statistics record only the number of individuals killed during these storms. Usually, these direct deaths, which average 24 per storm in official estimates, occur through drowning or some other type of trauma, according to the study. "People are dying earlier than they would have if the storm hadn't hit their community," said senior study author Solomon Hsiang, a professor of environmental social sciences at Stanford University. Looking at the death and destruction from Helene, Hsiang told the Associated Press that "Watching what’s happened here makes you think that this is going to be a decade of hardship on tap, not just what’s happening over the next couple of weeks.”

Community making strides to reopen Owatonna's Hospice House Owatonna People's Press, Faribault, MN; by Annie Harman; 10/8/24 ... Allan and Randee Radel smiled as they remembered the days they relied on the Homestead Hospice House to care for Randee’s mother, Kaye Mahlman, during the final days of her life. “It was wonderful. It was good for her, and it was good for the family,” Randee said, looking at the house as visitors strolled inside. ... It has been more than a year since the Hospice House has cared for a patient, but there is movement being made to open the doors once again as a full-service residential hospice care facility. And thanks to the Radels, that dreaming has taken a significant step toward reality. The couple handed over a check this week to the HHH Board to put toward the $850,000 fundraising goal to reopen the house. While the couple has decided they’d rather just call it a “very generous donation,” in lieu of sharing the actual number, those involved in the fundraising efforts are not shy to say with confidence that, thanks to the Radels and others like them, they are making “significant progress” in reaching that goal. ...

Hospice of Central PA President Gil Brown to retire Abel Personnel; by Rochelle Shenk; 10/9/24 After more than a decade of service at Hospice of Central PA, president Gil Brown will retire Dec. 31. According to a news release, Brown has been a driving force behind the organization’s growth, steering it through significant achievements and fostering strong relationships with health care partners and the community. Since joining Hospice of Central PA in 2014, Brown has led the organization through numerous milestones, including earning Joint Commission accreditation and securing a 5-star status in the We Honor Veterans program offered by the National Hospice and Palliative Care Organization. ... “Working with Gil has been a truly inspiring experience,” said Hank Straub, HCP Board Member. “His unwavering commitment to compassionate care and his visionary leadership have not only shaped Hospice of Central PA, but also set a high standard for excellence. Gil’s ability to lead with both heart and strategic focus has made a lasting impact, and it has been an honor to collaborate with him in serving our community.” 

Florida health-care workers exhausted as Hurricane Milton approaches The Washington Post; by David Ovalle and Sabrina Malhi; 10/8/24The storm shutters are up at Stephen Johnson’s house near the water in North Fort Myers, Fla. ... But  Jones won’t be home when Hurricane Milton is expected to thunder ashore this week along the Gulf Coast. Instead, the paramedic — like thousands of health-care workers across Florida — intends to ride out the storm at work, then jump into action when the winds die down, the waters recede and people seek medical assistance. ... “It gets stressful. You don’t know if you’re going to come back to a home,” Johnson, 28, of Brewster Ambulance Service, said during a brief break Tuesday after two straight days of organizing evacuations of patients from hospitals and assisted-living facilities across Lee County in southwest Florida while surviving on granola bars and energy drinks. ... By Tuesday afternoon, Florida health officials had deployed nearly 600 ambulances, buses and other transport vehicles to ferry patients out of harm’s way. More than 200 health-care facilities — including 115 assisted-living facilities, 10 hospitals and five hospice providers — have reported evacuations, according to the state’s health department.

Sixty-four Fla.-based healthcare facilities report evacuations  Healthcare Purchasing News - Regulatory; by Janette Wider; 10/8/24 Ahead of Hurricane Milton the Agency for Health Care Administration initiated an event in the Health Facility Reporting System. ... Health care providers have been requested to provide information on census, available beds, evacuation status, accepting evacuees and generator needs from counties declared under EO-24-114. This information allows AHCA to assist health care providers in transferring patients if needed and ensure that health care providers in impacted areas have the necessary resources and adequate power. 64 health care facilities have reported evacuations. This includes:

Couple who volunteers together, shares the same joy Envision - Greater Fond du Lac, WI; contact Betty Wallerser; 10/7/24 For the past nine years, Matthew Davis, a Green Lake resident, has been spending a good amount of his days volunteering with SSM Health at Home Hospice – Green Lake. “A friend of mine mentioned volunteering for hospice telling me that it was the most rewarding thing he had ever done, so I thought I’d give it a try,” according to Matthew. A handful of stories and memories later, Matthew is still volunteering for SSM Health at Home Hospice – Green Lake. ... In 2023, Matthew’s wife, Becky, also started volunteering for SSM Hospice at Home Hospice in Green Lake.  “I always wanted to be a hospice volunteer,” Becky shares. “I worked in physical therapy for 25 years and had a comfort level with patients I knew some people didn’t have. When a close friend of mine passed away on hospice, I knew it was my time to sign up.” Matthew and Becky are one of several couples who volunteer in hospice and are a great asset to the Volunteer Services team, as they both visit with several hospice patients a week.

Hospital-at-home care’s future still hangs in the balance Home Health Care News; by Joyce Famakinwa; 10/7/24 Even with a proven track record for clinical effectiveness and cost savings, the hospital-at-home model’s future hangs in the balance. “The data suggests that, for the populations that have been studied in multiple different places, it’s a very safe service to be done and with high-quality care, low readmission rates, low escalation rates, low infection rates,” Dr. Adam Groff, co-founder Maribel Health, told Home Health Care News. “The bottom line is people love it, patients love it and it’s a high-quality care experience.” ... In 2020, the hospital-at-home model had its breakthrough. Though the model was common internationally, it was considered niche in the U.S. This changed with the introduction of the Centers for Medicare & Medicaid Services’ (CMS) Acute Hospital Care At Home program. A recent report from CMS found that the program has been largely successful. ... Despite the momentum the model has seen in recent years, challenges still exist when it comes to operations and scalability. Specifically, less than 9% of waiver-approved hospitals accounted for more than 70% of all U.S. admissions, according to data from MedPAC’s June 2024 report to Congress. ... 

Ellen McGirt on supporting caregivers at work Great Place to Work; by Roula Amire with Ellen McGirt; 10/8/24 This episode of Better features journalist, speaker, and podcast host Ellen McGirt. In this deeply personal conversation, we dive into the challenges of caregiving while balancing a career.  ...On how managers can better support caregivers at work: Flexible time off, no questions asked. A flexible schedule can change everything for people. ...On the impact a senior leader can have by talking about caregiving and grief: If a very senior person triggers this conversation in the workplace with a disclosure or concern, you're going to see new training, new conversations, new talking points, and new volunteers, and maybe even new staff positions around this. ...On how colleagues can support coworkers who are caretakers, or members of the sandwich generation: Kindness and compassion go a long way. ...

Hospice of the Chesapeake Golf Tournament raises nearly $225,000 Southern Maryland News Net; 10/7/24 With a long list of sponsors, volunteers and more than 250 golfers to thank for it, Hospice of the Chesapeake’s annual Golf Tournament was a fantastic success. It raised nearly $225,000 for the not-for-profit that serves Anne Arundel, Calvert, Charles and Prince George’s counties. No doubt the venue and joyful attitude accompanied by food, drinks and giveaways helped to make it another successful year. Held Sept. 26 at Queenstown Harbor Golf Course, the tournament offered hospitality that began with an omelet bar in the morning, shrimp, oysters and bourbon along with grilled lunch at the turn and a gourmet awards banquet to cap off the day.

Still going at 90: Pioneering Jacksonville triathlete Dottie Dorion's life is now a film [Co-found of Community Hospice & Palliative Care in Jacksonville, FL]Jacksonville Florida Times-Union; by Matt Soergel; 10/8/24 ... Dorion's remarkable athletic life is told in a documentary called "Beyond Triathlon," which features her and fellow athlete Celeste Callahan of Denver, each of them pioneering competitors who in midlife decided they would devote themselves to grueling endurance races. ... [Her husband of 63 years,] George Dorion was in hospice care, a cause Dottie has long championed as an advocate for and a co-founder of Community Hospice & Palliative Care — at a time when hospice was a foreign concept to most people in America. She has been involved in numerous causes beyond hospice. She is co-founder of Volunteers in Medicine, a clinic that provides free health care to uninsured working adults and their families. And she's supported sports programs at the University of North Florida, particularly for women athletes; she's set up endowed scholarships there, and there's a fitness center on campus named after her.