Literature Review

Lessons learned establishing the Palliative Care Research Cooperative's Qualitative Data Repository Journal of Pain and Symptom Management; Salimah H Meghani, Kim Mooney-Doyle, Amber Barnato, Kathryn Colborn, Riley Gillette, Krista L Harrison, Pamela S Hinds, Dessi Kirilova, Kathleen Knafl, Dena Schulman-Green, Kathryn I Pollak, Christine S Ritchie, Jean S Kutner, Sebastian Karcher; 5/31/24 ... The [Palliative Care Research Cooperative Group] PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. ... Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. ... This work advances the establishment of best practices in qualitative data sharing.

Most people don’t get the end-of-life care they really want. Here’s what you can do to change that.[Maria Shriver's] Sunday Paper; by Karen Spencer; 6/1/24My mother died of cancer in 2011, when I was in my 30s. My father had died a decade earlier, and most of our family lived far away. So even though I lived in Boston and my mom was in Denver, we had to figure out how I could help care for her from a distance. ... Here are 3 lessons I’ve learned along the way that I hope will help you, too.

How hospice valuations are shaping up in 2024Hospice News; by Jim Parker; 5/30/24When it comes to hospice acquisitions, buyers’ and sellers’ expectations on price tags are becoming more aligned. A surge of deals in 2021 and 2022 led to record-high valuations in the space with multiples reaching in excess of 30x in some instances. While many buyers were willing to pay that premium, some stepped out of the market due to the high valuations. But deal volume has largely declined in late 2023 and early 2024, and valuations are starting to come down.

CU researchers analyze prevalence, impact of ethical or religious barriers to providing Medical Aid in DyingUniversity of Colorado Anschutz press release; by Tayler Shaw; 5/31/24The recently published paper finds that 26% of physician respondents reported large ethical or religious barriers to participating in medical aid in dying, but many of these physicians were still willing to engage in discussions with patients and provide referrals for care.

The state of the hospice nursing workforceHospice News; by Holly Vossel; 5/28/24Honing clinical scheduling and onboarding models is key to sustaining the hospice nurse workforce as demand for these clinicians rises and wages lag compared to those in other settings. Future generations of health care clinicians may be woefully unprepared to address both the quantity and and the complexity of emotional, physical and spiritual needs among a swelling aging population nearing the end of life.

More older adults becoming comfortable with using technology to help them age in placeMcKnight's Senior Living; by Kimberly Bonvissuto; 5/28/24Although fewer older adults say their homes are equipped to allow them to age in place in 2024 compared with 2023, more of them are getting comfortable with the idea of using assistive or health-related technologies to keep them living where they are, according to the results of a US News & World Report survey. ... The majority of survey participants (95%) agreed that aging in place was an important goal, up from 93% in 2023. The 2024 report took a deeper look at why older adults are — or are not — using assistive and health-related technologies, which technologies they use the most and their experiences with that technology.

Improving nursing home care goes beyond helping nursesMcKnight's Long-Term Care News; by Kristen Fischer; 5/30/24An editorial published Monday in the Journal of the American Geriatrics Society [Quality of care for older adults in nursing homes: It begins with registered nurses but does not end there!] points out flaws in moves to improve nursing home care outlined in a report published in March. Authors of the March report [RNs in nursing homes—It is not always about the numbers] shared a method to move beyond staffing numbers and optimize the workload of registered nurses. The model detailed nurse accountability, decision making, continuity of information and continuity of care. The authors shared the differences between RN work in the nursing home compared with acute care hospitals, and they also emphasized the importance of geriatric nursing knowledge.

The lonely Americans paying $3,000 for 'death doulas' to hold their hand while they dieDailyMail; by Alexa Lardieri; 6/1/24When it became clear that 88 year-old John Binder was dying, his daughter started making preparations to quit her job and travel nearly 1,000 miles across the country to take care of her elderly dad. The retired mechanic, who suffered kidney failure as a result of diabetes, couldn't be looked after by his wife, as she was also elderly and had recently undergone cancer treatment, and he refused to go to a hospice center. But then, a church leader recommended the family contact a death doula.Publisher's Note: Opportunities (missed opportunities?) hospices might consider.

4 CEOs share their uncommon - or unpopular - opinionsBecker's Hospital Review; by Kelly Gooch; 5/29/24CEOs shared an unpopular (or uncommon) leadership or healthcare opinion they have. Here are answers collected by Becker's this year.

St. Vincent Hospital nurses and the MNA file fifth in series of complaints with state and federal agencies about dangerous patient care conditions that continue to compromise the care and safety of patients admitted to the Worcester-based facility Massachusetts Nurses Association (MNA); 5/29/24 As patient care conditions continue to deteriorate at St. Vincent Hospital, the registered nurses and the Massachusetts Nurses Association (MNA) have filed yet another round of complaints to state and federal agencies seeking immediate intervention to protect patients and staff, a situation so dire the complaints include a direct appeal to the Department of Public Health to assign onsite inspectors on a daily basis to ensure hospital administration is providing the resources needed to ensure the safety of all concerned. In fact, the nurses report that DPH has recently been at the hospital investigating yet another serious patient safety incident. Editor's Note: As reported in numerous articles in our newsletter, patient safety and workplace violence/safety issues continue to be key causes for healthcare professional resignations, unionizations, and strikes (ie., nurses and/or physicians). It's time to review your organization's patient safety and workplace violence Policies and Procedures, staff and volunteer trainings, caregiver resources to ensure patient safety in the home, topics like "Abuse and Neglect," and your community's data on workplace safety concerns and community response resources.

Hospice [of the Sacred Heart Inpatient Unit]] receives $5,000 donationThe Citizens' Voice; 5/30/24 Sherry Cross recently delivered a $5,000 check to the Hospice of the Sacred Heart Inpatient Unit in Dunmore [PA]. The check represents proceeds from the 2nd annual 'Night to Remember' fundraiser in memory of Sherry's sister, Tracy Gototweski. ... "Please accept this donation of $5,000 as a token of our gratitude for all you do. It is an honor to have the opportunity to give back to your wonderful organization. We hope that our efforts will support patients and their families and keep Tracy's star shining bright," Cross said. 

They sacrificed to care for family and ended up on the street Wisconsin Public Radio; by Kat McGowan; 5/29/24 ... A son or sibling or niece gives up their own apartment or full-time job to look after a relative who needs help. They share expenses, maybe living off of a benefits check. But when that family member passes away or moves to a nursing home, the social security or housing subsidy stops coming. The caregiver is in mourning, out of a job and out of a place to live. “These were folks who had left behind something to go care for mom, and then the bottom falls out,” says Margot Kushel, a homelessness researcher and professor of medicine at University of California, San Francisco. Her team documented this pattern in their intensive surveys and in-depth interviews of older homeless Californians. ... Kushel envisions one brighter possibility. Given the extreme shortage of capable home caregivers, both in California and nationwide, people who have played that role for family could be recruited to do the same job for others, helping to build this essential workforce. “If you’re caregiving for 15 months for your mom, for instance you probably have transferrable skills,” she says.Editor's Note: Pair this with recent articles we posted on 5/30/24, "The real cost of cancer: 49% of patients carry $5K+ in medical debt" and "56 percent willing to dip into retirement savings to be family caregiver: survey."