Literature Review

Burnett Center restores labyrinth as community healing space Southern Maryland News, LaPlata, MD; by Aamaly Hossain; 7/21/25 On a wide stretch of land, nestled between Barbara Burnett’s two homes and a weathered barn, stands the Burnett Center for Hope and Healing — and beyond it, is its labyrinth. Once known as Calvert Hospice, the center is now part of the Hospice of the Chesapeake and transformed from a patient-filled facility into a community space centered solely on healing. “We’ve reimagined it into a center for everyone in the community experiencing any kind of loss, grief, illness — whatever they need to heal,” Heather Conner, volunteer service manager with Hospice of the Chesapeake, said.

Understanding the influence of culture on end-of-life, palliative, and hospice care: A narrative review Cureus; by Veena Hira, Sainamitha R. Palnati, and Saajan Bhakta; 7/15/25 ... This narrative review included 25 relevant publications related to influence of culture and patient demographics on end-of-life care, hospice, and palliative care. As each culture has its own unique views on death and dying, it is crucial to note these cultural differences when assisting with end-of-life care to best align with patients’ beliefs and values. Themes such as cultural barriers, communication preferences and family roles emerged from the publications. ... This narrative review offered a snapshot of how culture influences end-of-life decisions worldwide, specifically in East Asia, South Asia, the Middle East, Europe, and North America, while highlighting themes of 1) truth disclosure and communication preferences, 2) patient autonomy and family involvement, and 3) perception of illness and death. ... Central to providing effective end-of-life care is open, culturally tailored communication that respects patients’ and families’ values, facilitated through shared decision-making discussions. ... Ultimately, integrating cultural understandings of death and dying into end-of-life care planning is not simply a matter of sensitivity, but it is a matter of quality and equity. Health systems must not only provide choices but ensure those choices are intelligible, meaningful, and respectful within the patient’s worldview.Editor's Note: Pair this today's post, My health and my politics walk into a doctor’s office …

Hard decisions: Using legal authority over an aging parent Forbes; by Carolyn Rosenblatt; 7/9/25 The phone call came to Dad’s daughter (FD) at 6 AM. Again. This time, it was the night [home] caregiver reporting that her father had fallen while trying to get out of bed. She had jumped up and tried to stop him but she could only get to him in time to break his fall. ... For months, FD had watched her father's condition deteriorate from 300 miles away, visiting as often as she could. Advanced dementia had robbed Dad of his independence, and multiple physical ailments had left him requiring round-the-clock care. He was on hospice care, ... FD [daughter and legal authority] felt compelled to make a decision about moving Dad [from home to a facility]. ...

5 ways to have a ‘good death’ — including one of the biggest mistakes people make New York Post; by Reda Wigle; 7/3/25 No one gets out of life alive — but one expert says we can take steps to make sure we leave the earthly plane riding the high of a “good death.” “While 80% of people want to die at home surrounded by loved ones, only 30% actually do,” End Well founder Dr. Shoshana Ungerleider told The Post. “This massive gap reflects our system’s inability to honor what patients actually value.” As our cultural relationship to mortality has changed, Ungerleider notes that we have become disconnected from the process of death and, in turn, fail to plan appropriately for it. But if you’re not sure where to start, she has a helpful checklist of everything you should be doing to avoid a “bad death.”

[United Kingdom] Grandson to run 120km over 24 hours for hospice BBC News, Bristol, UK; by Clara Bullock; 6/28/25 A 31-year-old man is training to run 120km (75 miles) in 24 hours, in memory of his grandmother and to raise awareness of palliative care. Mary Lerway died in October 2023 and now Josh Galea, her grandson who lives in Bristol, is running the equivalent of almost three marathons to support St Peter's Hospice. Mr Galea, who became Ms Lerway's informal carer when her health declined, said: "Unfortunately, the end of my Nan's life was very difficult, not only for her, but also for the wider family who had to care for her. ... Ms Lerway was first seen by nurses from St Peter's Hospice 48 hours before she died. Mr Galea said that within an hour of them arriving the whole situation improved and the family could "breathe a sigh of relief"."It put us at ease knowing that she was being looked after, and it allowed us to say goodbye to her peacefully," he said.

Families demand end to Medicare waiting period for early-onset Alzheimer’s patients Washington Examiner; by Elaine Mallon; 6/15/25 Jason Raubach was diagnosed at 50 years old with early-onset Alzheimer’s disease — a diagnosis that affects nearly 200,000 Americans. He received the diagnosis in 2018, completely upending life for his family. His youngest child was just a freshman in high school. ... Shortly before receiving an official diagnosis, Jason Raubach lost his job, having to move his family onto a consolidated omnibus budget reconciliation act health plan, or COBRA plan, which allows a person to keep their health insurance even after losing their job. “It wasn’t cheap,” Elizabeth Raubach said.However, once diagnosed, Jason Raubach had to wait two and a half years before he could receive coverage under Medicare, health insurance for those 65 years and older or those with qualifying disabilities. But Elizabeth Raubach, along with dozens of other caretakers for people diagnosed with Alzheimer’s, called on Congress in a letter to eliminate the 29-month waiting period required for those under the age of 65 to receive coverage under Medicare. ...

Nurse practitioners step in as geriatrician ranks shrink The Washington Post; by Jariel Arvin; 6/15/25 On Fridays, Stephanie Johnson has a busy schedule, driving her navy-blue Jeep from one patient’s home to the next, seeing eight people in all. Pregnant with her second child, she schleps a backpack instead of a traditional black bag to carry a laptop and essential medical supplies ... “Our patient isn’t just the older adult,” Johnson said. “It’s also often the family member or the person helping to manage them.” Johnson isn’t alone. Today, nurse practitioners are increasingly filling a gap that is expected to widen as the senior population explodes and the number of geriatricians declines. The Health Resources and Services Administration projects a 50 percent increas in demand for geriatricians from 2018 to 2030, when the entire baby boom generation will be older than 65. ...

Hospice a saving grace during our hardest time Pikes Peak Courier; by Mary Lovato; 6/11/25 ... I recently lost the two most important men in my life. My husband passed away from bladder cancer and within 6 months, my brother passed away from COPD. The individuals who worked for Hospice and helped us deal with the end of life of each of these loved ones were amazing. It wasn’t just the medical personnel, it was also the person who came to the house to set up the required equipment, it was the person who bathed the patient, it was the social worker, it was the person who offered spiritual guidance, it was even the person who in an emergency, delivered medicine in the middle of the night.

Celebrating Father’s Day after your Dad has passed Delaware Hospice, Milford, DE; retrieved from www.delawarehospice.org on 6/12/25 The days leading up to Father’s Day can be difficult for those who have lost a father. Father’s Day is surrounded by consumerism—and seeing all the commercials, greeting cards, and restaurant specials can be emotionally overwhelming. The holiday can be especially hard for those experiencing their first Father’s Day without their dad, and they may be tempted to avoid the holiday altogether. However, Father’s Day doesn’t have to be about gifts or grilling out with Dad. There are still many ways to celebrate, remember, and honor your father this Father’s Day, even if he is no longer physically with you.

Caring for Gladine: A Las Cruces man's account of caregiving for his wife with dementia Las Cruces Sun News; by Leah Romero; 6/10/25 When Gladine Lindly was diagnosed with dementia in 2018, she and her husband Steve Gaskell decided to manage at home. But as Lindly’s dementia progressed, Gaskell quickly realized he needed help taking care of her. ... “She said, ‘I want you to be my caregiver. ... I don’t want to go into a home or facility,’” Glaskell recalled. “I proceeded to walk into the doors of Home Instead to apply for a job because I wanted to learn how to be a caregiver. Never done anything like that before.” ...  By September 2024, Lindly ... was placed on hospice care. By December, the hospice nurse told Gaskell it was time for family and friends to start saying their goodbyes.  ... [Gaskell described her death,] "And it was as peaceful as you can imagine. And that was…this sounds crazy to say, but that was probably the easiest part of the whole process.” Lindly passed on Jan. 7, 2025 at the age of 77. [Go to the source article for more of this inspiring story about caregiving through dementia.]

NPHI proud to announce its partnership on the upcoming documentary for PBS, Caregiving, from Executive Producer Bradley Cooper National Partnership for Healthcare and Hospice Innovation (NPHI), Washington, DC; 5/19/25 The National Partnership for Healthcare and Hospice Innovation (NPHI) is proud to announce its partnership on the upcoming PBS documentary Caregiving, a powerful new film executive produced by Academy Award-nominated actor, director, and producer Bradley Cooper. Created in collaboration with Cooper’s production company, Lea Pictures, as well as WETA Washington, D.C., and Ark Media, Caregiving will shine a national spotlight on the often unseen yet essential work of caregivers across the country. NPHI is honored to serve as a national partner on this important project. Narrated by Uzo Aduba (The Residence, Orange Is the New Black) and directed by Chris Durrance, Caregiving intertwines deeply personal stories of caregivers with the untold history of the American care system. The documentary examines how caregivers—often family members, friends, and frontline professionals—navigate the immense challenges and unseen achievements of their roles.

A critical examination of ‘family’ caregiving at the end of life in contexts of homelessness: Key concepts and future considerationsPalliative Care and Social Practice; Ashley Mollison, Kelli I. Stajduhar, Marilou Gagnon, Ryan McNeil; 5/25In a world that is becoming more inequitable, understanding and reducing health disparities is a key priority for palliative care. This essay has demonstrated that bio-legal assumptions and privileging may be yet one more inequity in palliative care to address and overcome. This essay has focused in on populations facing homelessness and housing vulnerability, but changing families and growing inequality suggests the potential broad applicability of this work for our collective future. Palliative care is one of the areas of the Western healthcare system that explicitly attends to the person with serious illness and their family and caregivers understanding deeply how the suffering and joys of one group impacts the other. If there is a place in the current health system that can truly make space for caregiving – in all the ways it happens – it is, and should be, palliative care.

What caregivers should know about end-of-life rallies  AARP; by Jamie Ducharme; 5/19/25People with advanced illnesses sometimes experience unpredictable bursts of energy or clarity. Here’s how caregivers should handle these episodes. Roughly a decade after her mother was diagnosed with Alzheimer’s disease, Liz Donnarumma got her back — but only for an instant. It happened one evening in 2021, more than a year after Donnarumma first realized her mother, Theresa, didn’t recognize her. Theresa took Donnarumma’s face in her hands, called her by her nickname and thanked her. “When she put her hands on my face and I looked into her eyes, she was totally there. It was my mother,” Donnarumma says. “It was like a second, just one second, and it was gone.” Donnarumma’s mother had an episode of “paradoxical lucidity” — that is, an unexpected burst of mental clarity, despite her advanced condition. While these moments are as unexplained as they are unexpected, experts say they are more common than many people realize. ...