Literature Review

Muslim community-engaged research highlights Muslim Americans' end-of-life-healthcare gaps and needs WisconsinMuslimJournal.org; by Sandra Whitehead; 12/20/24 Few Muslim Americans use hospice care, despite its posited benefits. A multi-sectoral team of academicians and community leaders in southeastern Wisconsin decided to find out why. ... Muslims are one of the fastest-growing religious communities in the United States, numbering between 3 to 5 million, with projections it will double by 2050. “With an aging Muslim population, there is a growing need for specialized healthcare services like hospice and palliative care,” the team’s research explains. ... Through a qualitative descriptive study with a Muslim patient and 10 family caregivers, the research team identified their perceptions of hospice care, ethical concerns and experiences. Among their varied perceptions, many saw it as useful only in the last hours of life. Participants also had ethical concerns about the use of sedative medication and with cessation of feeding terminally ill patients. Some had concerns about how hospice care might lead to unnecessary interventions or even hasten death. ...  The team is developing an informational resource, Islamic Bioethical Considerations for the End of Life: A Guide for Muslim Americans, to help Muslims who struggle when thinking about death and dying. 

Meet the Santas helping Pa. families with sick children weather holidays in hospitals PennLive.com; by Sarah Boden; 12/24/24 Katelyn Pownall wasn’t sure her 3-year-old son would ever meet Santa Claus. Nash was born with Menkes disease, a rare genetic disorder that disrupts the body’s ability to absorb and distribute copper. This causes severe damage to the nervous system, as well as connective tissue abnormalities in the skin, joints, and bones.  Menkes is terminal, and since May, Nash has lived at the Children’s Home of Pittsburgh, Pownall told Spotlight PA. The hospital provides specialized pediatric care to medically fragile children. “We just count our moments, not our days,” Pownall said. Earlier this month, Pownall and Nash relished a magical moment: They met both Santa and Mrs. Claus at the hospital. ...

Hospice study reveals contrasting views on managing dementia behaviors McKnights Long-Term Care News; by Donna Shryer; 12/20/24 A new study finds that healthcare providers and family caregivers often disagree on how best to manage dementia behaviors during end-of-life care. The research, published in the Journal of the American Geriatrics Society, involved interviews with 23 hospice clinicians and 20 family caregivers. With dementia affecting 33% of adults over age 85 and now ranking as the primary diagnosis for Medicare hospice services, understanding these differing perspectives about managing dementia behaviors has become increasingly important. The study found that while both groups identified agitation as the most concerning behavioral symptom, they approached it from different angles. Clinicians primarily worried about physical safety risks, while family caregivers were more distressed by personality changes in their loved ones.

Palliative care, mental health services underutilized in pancreatic cancer Healio; by Jennifer Byrne; 12/19/24 Individuals with pancreatic cancer underutilized palliative care and mental health services, according to a retrospective analysis. ... Researchers from Saint Louis University used electronic health record data from Optum’s Integrated Claims-Clinical Data set to identify 4,029 patients with newly diagnosed pancreatic cancer. The investigators then used ICD-9/10 codes to identify subsequent diagnoses of anxiety and depression, as well as palliative care consultations. ... Results showed higher prevalence of anxiety (33.9% vs. 22.8%) and depression (36.2% vs. 23.2%) among patients who had palliative care consultations than those who did not have documented consultations. ... Healio: Did any of your findings surprise you? Divya S. Subramaniam, PhD, MPH: It was unexpected to see that palliative care consultations, despite identifying higher levels of anxiety and depression, did not increase treatment rates for these mental health conditions. This suggests mental health might not yet be a central focus in palliative consultations, which often concentrate on managing physical symptoms.

Weekly US Map: Influenza summary updateCDC - U.S. Centers for Disease Control and Prevention; ongoing, retrieved from the internet 12/16/24A Weekly Influenza Surveillance Report Prepared by the Influenza Division Editor's note: Bookmark this page to your web browser to monitor flu activity in your service areas through these more vulnerable winter months. Click on the map's "State" button for macro data at the state level. Click on the map's "CBSA" to drill down to counties.

What they love and loathe: Medscape Nurse Career Satisfaction Report 2024 Medscape; by Jon McKenna; 12/13/24 Despite well-publicized issues buffeting their profession, nurses in a Medscape survey overwhelmingly said they are happy with their career choice, and most said they would make it again. They also told us about their most- and least-favored job features, recounted any experiences with abuse at work, revealed possible alternative careers, and reported union membership, among other insights. [Click on the title's link to continue reading.]

Families value flexibility and compassion in end-of-life care for children with cancer Hematology Advisor; by Megan Garlapow, PhD; 12/12/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.

Commentary: The coat my mother never wore National Public Radio - WBUR, Boston, MA; by Karen Propp; 12/11/24 Shortly before Thanksgiving 2018, I bought my 87-year-old mother a winter coat — a silvery-gray one that matched her hair. None of us could remember the last time she had left the house, spoken in full sentences or walked without assistance, but my father hoped that a new ultra-light coat might change things.  ... Having been close to others with progressive or terminal illnesses, I did not share his optimism. But it felt cruel to dash my father’s hope, so I hung the coat in the front hall closet, as if it were a talisman that could bring us a miracle. My mother died peacefully, late in the morning that December 24. By the time the men from the funeral home arrived, it was already dark outside. ...Editor's note: Click on the title's link to read how this simple coat evoked a daughter's grief, coping, and realization of her mother's qualities within herself. Non-clinical leaders: in case you're not aware, the extensive body of grief research reveals that grief does not have a last "stage" of "acceptance." Rather, mourning begins with a first step or "task" of accepting realities of the loss (Worden), with another step or "task" of establishing enduring connection (Worden)--which this daughter found within herself. These are not stages. Rather, they are ongoing cycles (mini and macro), with other identified, individualized dynamics.

New fellowship will help imprisoned women plan for end of life Washington State University - WSU Insider; by Scott Swybright; 12/9/24 Incarcerated individuals have few personal rights, but one they do retain is the ability to create advance directive plans for their health care. Unfortunately, few know that this is the case. A new project led by a Washington State University graduate student will educate more incarcerated people about their options as they approach the end of their lives. “When folks are incarcerated, they lose most of their bodily autonomy and basically become property of the government,” said Tosha Big Eagle, a doctoral student in WSU’s prevention science program at the WSU Vancouver campus. “Advance directives are one outlier, but nobody tells them about that right.” To help educate prisoners, Big Eagle recently received a fellowship from The Order of the Good Death, a group helping all people face end-of-life concerns, fears, and legalities. Big Eagle’s project will focus on ensuring incarcerated people at the Washington Corrections Center for Women (WCCW) have access to end-of-life resources.

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.

Stillwater Hospice hosts month LGBTQ+ grief group Northeast Indiana Public Radio, 89.1 WBOI, Fort Wayne, IN; by Ella Abbott; 12/5/24 Stillwater Hospice has a grief support group for those in the LGBTQ+ community, offering a safe, affirming space to open up about the challenges of loss. ... The group was started in 2022, following the opening of the Fort Wayne Pride Center downtown. Stillwater director of communications Bonnie Blackburn-Penhollow said people in the LGBTQ+ community can have additional stressors added onto their grieving. “They may not feel like they can have grief, or express their grief, if their family is not approving," she said. "They need to be able to talk to people who understand what those kind of constrictions on life are like.” The goals of the group are to create coping strategies for navigating grief, build resilience while honoring loved ones and address the unique experiences and challenges faced by LGBTQ+ individuals while grieving.

Living and growing: Spiritual care at end of life Juenaeu Empire; by Claire Richardson; 12/7/24My favorite Gold Creek trail was damaged in one of the 2024 storms that swept through Juneau and altered the creek with a deluge of boulders, rocks and uprooted trees. You could only walk about 100 yards before the alders blocked the route. I didn’t venture there again until recently. Imagine my surprise when the dogs disappeared down the trail and this time, with wind blowing leaves to the ground, I could see clearly that the trail had been restored. Someone had cut off branches that impeded travel and without leaves to blur the way, I could easily find the new route. I felt a delightful sense of discovery, for here was an old, familiar trail now accessible on a frosty fall morning. Even though I knew where I was going, the newness of the path energized me. I moved forward with a smile. Spiritual care offered through hospice can be a lot like finding an old soul trail, but with new twists and turns. ...  Think of your hospice chaplain as a fellow hiker. While we can’t make the journey for you, we can listen carefully to your story of traveling through life. We can walk with you at your pace, perhaps pointing out a few game trails you could explore, but always following your lead.

Holiday joy for children in hospice: Inside the North Pole ‘Fantasy Flight' at Dulles NBC Washington News4; by Joseph Olmo; 12/7/24 Early on Saturday morning, the crowd of almost 100 kids was buzzing with excitement as they waited to board their "North Pole"-bound flight out of Dulles International Airport. Some of the kids wore masks. Others were in wheelchairs, walked with crutches, or had lost their hair. Many are patients with Alexandria nonprofit Children's Hospice International (CHI) -- and all, though they may not know it, were celebrating what could be their last holiday with their families. It's a sobering fact that seems at odds with the joy and enthusiasm aboard the Boeing 777 airplane. But as United Airlines said in the press release, that's exactly the point of the flight. "Come join us as we fly some magic into the lives of children who need it most this holiday season," United said. And magic was provided. Flight attendants and pilots took their job very seriously as they guided passengers to their seats for the flight to NTP: North Pole International, of course. "Did we already write our letters to Santa?" asked one flight attendant, as she walked a family through the tinsel-decorated tunnel to the plane. "Yes," a tiny voice replied. The flight, begun at Dulles 34 years ago in 1990, is an annual event for children battling life-threatening illnesses, and their families. [Click on the title's link to continue reading this story.]