Literature Review

Family caregiving for older persons with dementia at end-of-life: A comprehensive overviewInternational Perspectives on Family Caregiving; Cynthia A. Hovland; 4/25 Family caregiving for older persons with dementia at the end of life is a perplexing, challenging, and growing concern across the United States and other developing countries. This overview looks at these epidemiological forecasts, scope, and impact of dementia on the family and caregiver. Using a bio-psycho-social theoretical framework helps to understand identified problems and issues for the caregiver and implications for the older adult with dementia. Caregiver issues include the burdens as well as positive aspects of this role, but the unknown trajectory of dementia poses significant challenges. Caregivers' responses are impacted by their individual resilience and supports, and recommendations for approaches, strategies, and interventions for caregivers and health professionals are provided.

Breaking with the status quo in end-of-life care through de-implementation Journal of Internal Medicine; by Chetna Malhotra and Ellie Bostwick Andres; 4/17/25... In the realm of serious illness, many patients undergo interventions that may marginally prolong life but often sacrifice quality of life and entail significant costs. These interventions, categorized as ‘low-value care’, often involve complex procedures, frequent hospitalizations and intense medical management, leading to considerable discomfort, reduced functional ability and overall decreased well-being and calling into question the efficiency and effectiveness of current end-of-life (EOL) care practices. ... How to conduct de-implementation in EOL contexts:

Location of terminal care in pulmonary hypertensionCJC Open; Ramzi Ibrahim MD; Adam Habib MD; April Olson MD; Farah Shrourou; Hoang Nhat Pham MD; Mahmoud Abdelnabi MBBCh MSc; Maryam Emami Neyestanak PhD; Sabrina Soin DO; See-Wei Low MD; Bhupinder Natt MD; Mamas A. Mamas BMBCh MA DPhil FRCP; Timothy Barry MB BCh BAO; Chadi Ayoub MBBS PhD; Reza Arsanjani MD; Franz P. Rischard MD; Kwan Lee MD; 4/25Palliative care services have seen an increase in utilization in recent years, yet this uptrend has not been observed uniformly across all groups. The recent decline in mortality within inpatient facilities, despite the persistently high mortality rates of PH [pulmonary hypertension], depicts better coordinated patient-centered care, including hospice and at-home services. Nonetheless, place-of-death disparities remain, linked to demographic variables. Specifically, minority ethnic groups in the US have not experienced this increase. These populations often harbor misconceptions and unconscious biases about the nature of palliative care. The Pulmonary Hypertension Association, recognizing this gap, has advocated for the integration of palliative care into the treatment regimen for patients with PH.

Identifying palliative care needs in heart failure patients with nurse-led screening Journal of Hospice & Palliative Nursing; by Cantey, Christina DNP, FNP-C, AACC, CCK; Douglas-Mattis, Yhaneek DNP, AGACNP-BC; Lisiakowski, Jillian DNP, FNP-C; Fowler, Caley MSN, RN; Ejem, Deborah PhD, MA; 4/18/25 ... This quality improvement project aimed to improve the identification of unmet palliative care needs in patients with heart failure admitted to a progressive care unit by implementing a standardized nurse-administered palliative care screening tool. ... Implementing a nurse-administered screening tool effectively identified unmet palliative care needs among patients with heart failure with reduced ejection fraction and NYHA III. Despite low rates of palliative consults, standardization using IPOS could increase screening, contribute to institutional triggering palliative consultations, and improve awareness of unmet needs.

Riders Up! ... Simone Biles will be calling  the "Riders Up!" command at today's Kentucky Derby 2025. "Rider Up" serves as the signal for jockeys to mount their horses in preparation for the race. 

[Taiwan] Palliative care with negative pressure wound therapy application in malignant wounds: a systematic reviewJournal of Wound Care; Xiao-Feng Yao, Yen-Jen Wang, Yang-Sheng Lin; 4/25Of 765 articles screened, 14 eligible studies were included in the review. The location of the hard-to-heal wounds was widely distributed: five wounds on the scalp; three wounds over the anogenital area; and the remaining wounds on the trunk and extremities. The reported outcomes included: improvement of wound healing; decreased exudation and malodour of the wound; decreased pain sensation; eligibility for further treatment; and a shift to the homecare system. The findings of this study suggested NPWT [negative pressure wound therapy] could be a choice in palliative care for patients with malignant wounds. However, more studies are needed to evaluate the efficacy of NPWT in these wounds.

Social Media Watch 5/2/25

Live as if you were to die tomorrow. Learn as if you were to live forever ~ Mahatma Gandhi

Safe Harbor Estate Law launches “Dignity Drive” to support Minnesota hospice patients during Elder Law Month The Luverne Journal, PR Underground; 5/1/25 In recognition of May as Elder Law Month, Safe Harbor Estate Law is proud to announce the launch of the Safe Harbor Dignity Drive, a community-wide campaign to collect clean, comfortable clothing and comfort items for hospice patients facing end-of-life care with limited resources. Inspired by conversations with their partners at St. Croix Hospice, Safe Harbor learned that many patients spend their final days without appropriate clothing—often due to significant weight loss, mobility challenges, or a lack of support. Soft, well-fitting clothing can provide warmth, dignity, and peace during an incredibly sacred time. “We believe everyone deserves to feel respected and cared for—especially in their final days,” said Margaret Barrett, founder of Safe Harbor Estate Law. “The Dignity Drive is our way of helping ensure no one spends those moments without the basic comfort of clean, cozy clothing.”

A powerful film chronicles one man’s last days within a loving community for all to witness. Monterey County Now, Seaside, CA; by Pam Marino; 5/1/25 Facing certain death from a brain tumor, Ethan “E3” Sisser adopted a mantra. “I am embodied. I am empowered. I am ecstatic,” the 36-year-old would tell himself, in order to ward off oncoming seizures, carry himself through pain or recite for his many followers on social media. “E3” became his nickname. We see Sisser, looking into the camera, recite the mantra early in the documentary, The Last Ecstatic Days, released in 2024. We also meet his hospice and palliative care physician, Aditi Sethi, who leaves her position to become his death doula and friend. She fulfills his wishes for a peaceful death surrounded by a caring community, filmed for others to learn from. Director Scott Kirschenbaum – who made one of the definitive documentaries about birth, These Are My Hours – spent the last two weeks of Sisser’s life near his side with a camera, capturing each moment.

Think you know what nursing research looks like? Think again Boise State News, Boise, ID; 4/30/25 “Research” doesn’t just mean generating new discoveries through experimentation. Boise State supports Boyer’s model of scholarship, which expands the definition of research and creative activity to include applying and integrating knowledge into other settings, as well as teaching it. ... [An] interdisciplinary team is working to improve hospice and palliative care for refugees. ... Clinicians and refugees often do not share common cultures, languages or communication norms, so [Kate] Doyon has been building a community advisory board to create a communication guide. They’re working with stakeholders–including refugees and providers–to develop prompts that will enhance the care refugees receive, starting on the level of communication. Ornelas said the refugees they interviewed “gave us a lot of insight on different cultures and how we can go about and make prompts.” The prompts are short phrases to remind the healthcare team of best ways to interact with refugees and productively approach conversations.

Administration to close HHS Civil Rights office Newsmax; by Brian Freeman; 4/28/25 As part of massive cutbacks at the Department of Health and Human Services, the Centers for Medicare & Medicaid Services will shut down their civil rights office in June, according to an email sent to staff on Monday and viewed by Politico. HHS has already been reduced by some 20% as part of overall downsizing, with Secretary Robert F. Kennedy Jr. and President Donald Trump focusing on eliminating those programs and agencies they say promote diversity, equity, and inclusion. ... Complaints that are nearing completion connected to workplace harassment and discrimination will be closed out in the coming weeks, and remaining complaints will be "transferred to an appropriate entity," the email stated.Editor's note: Data from the 2024 NHPCO Facts and Figures Report states: "In CY 2022, 51.6% of White Medicare decedents used the Medicare Hospice Benefit. 38.1% of Asian American Medicare decedents and 37.4% of Black Medicare decedents enrolled in hospice. 38.3% of Hispanic and 37.1% of North American Native Medicare decedents used hospice in 2022." The discrepancies between white and non-white decedents demonstrate double-digit differences. Extensive evidence-based research validates wide gaps in hospice/healthcare for persons whom the HHS Civil Rights office is charged with protecting. For more, visit Office of Civi Rights Home | HHS.gov and Office of Civil Rights About Us. 

Assembly passes bill to allow medically assisted death for terminally ill New Yorkers NNY360, Watertown Daily Times and Northern New York Newspapers, Watertown, NY; by Alex Gault; 4/2925 The New York state legislature is poised to pass a bill that would allow terminally ill people to seek a medication to end their lives, a process called medical aid in dying. On Tuesday, the Assembly voted for the first time to advance a bill, carried by Assemblywoman Amy Paulin, D-Westchester, that would allow a terminally ill patient to ask for a prescription for a lethal medication, to be taken at home on their own terms.