Literature Review

A daughter’s cautionary elder care tale The Progressive Magazine - Book Review; by Bill Lueders; 5/12/25 The call that woke Judy Karofsky in the middle of the night on May 18, 2015, was from a hospice nurse, who got right to the point: “I’m calling to tell you that your mother has died.” Karofsky, deeply shaken by the unexpected news, managed to ask, “Did she struggle?” Karofsky’s important new book, DisElderly Conduct: The Flawed Business of Assisted Living and Hospice, does not mention the hospice nurse’s response to this question. But it does note that she called back a moment later to say: “I’m so sorry . . . . I called the wrong number. I’m at a different facility and I had the wrong file.” Karofsky’s mother, Lillian Deutsch, had not died at all. It was someone else’s mother. Apologies were made. This is just one of many stories Karofsky shares throughout the book about the final years of her mother’s life in Wisconsin. This particular anecdote strikes me as noteworthy not just as an example of the sort of awful things that can happen when facilities are understaffed and staff members are overworked, but also because Karofsky’s first reaction was to wonder whether she struggled.Editor's note: Though printed news typically lifts up the good, compassionate moments of hospice care, most all of us have experienced negative accounts--professionally and/or personally. While this book is sure to give significant insights, perhaps the most important lessons are waiting to be validated from your own family caregivers, employees, and volunteers. What stories are behind your lower-than-you-want CAHPS Hospice scores? Dig deeper. May we all listen, learn, and improve care.

It's time to talk about LGBTQ+ elder care Psychology Today - Caregiving; by Stephanie Sarazin, M.P.P.; 5/6/25 A once-hidden story is helping us think about queer kinship and caregiving. Key points:

To the brink and back: How near-death experiences can change how people work The Conversation; by Adauri.AI; 5/5/25 What happens when someone comes close to death and then returns to everyday life, including work? For some, the experience can be transformative. ... Although near-death experiences (NDEs) have been studied since the 1970s, we know relatively little about how they affect people after the event. Research suggests people who have near-death experiences may feel increased empathy, spiritual growth, a sense of purpose and even change how they approach their jobs. Our recent study explored how near-death experiences impact people’s return to work. We interviewed 14 working adults who had a near-death experience as a result of medical crises such as a heart attack or accidents such as a car crash. What we found challenges conventional ideas about success, motivation and workplace culture.

5 risk factors at 50 can steal a decade of life Medscape; by Nadine Eckert; 4/17/25 Five classic risk factors for cardiovascular disease — high blood pressure, high cholesterol, obesity, diabetes, and smoking — at age 50 can reduce life expectancy by more than 10 years. This is the conclusion of an international study led by German researchers and presented at the 2025 American College of Cardiology Scientific Session. These five factors account for approximately 50% of the global burden of cardiovascular diseases. ... The findings, also published in The New England Journal of Medicine, show that lifestyle changes and risk management in middle age can make a significant difference. Lowering blood pressure and quitting smoking had the most significant impacts.

A hospice nurse made a promise—and found homes for 1,300 pets  Miami Herald, Miami, FL; by Jen Reeder; 4/7/25Working as a hospice nurse, Joanne Bonicelli spent years offering comfort to dying people. Then, in 1998, a request from one patient changed her life. A young woman in her 40s had a fluffy white dog named Jasper, who never left her side while she was at Pikes Peak Hospice & Palliative Care in Colorado Springs, Colorado.  One day, the woman called Joanne to her bedside. “I don’t know where Jasper will end up or who will care for him when I am gone…it’s just too painful to bear,” she told Joanne as tears streamed down her face. “I can’t die in peace worrying what will happen to him…can you euthanize him in my arms as I pass?” The heart-wrenching request stunned Joanne. She asked a veterinarian about what they could do, and after meeting Jasper, the vet’s eyes welled with tears at the prospect of putting down a healthy dog. There has to be a better way, they both agreed. [Continue reading ...]

"Are they just experimenting with all of us?" Cultural considerations for clinicians caring for seriously ill Great Plains American IndiansAmerican Journal of Hospice and Palliative Care; Bethany-Rose Daubman, Tinka Duran, Gina Johnson, Alexander Soltoff, Sara J Purvis, Leroy J R LaPlante, Sean Jackson, Daniel Petereit, Matthew Tobey, Katrina Armstrong, Mary J Isaacson; 3/25Serious illnesses like cancer disproportionately affect American Indians and Alaska Native (AI/AN) Peoples. AI/AN patients deserve culturally responsive healthcare at all times, and especially when journeying through serious illness. Interviews and talking circle qualitative analysis revealed 3 major themes related to clinician needs: cultural considerations, psychosocial support, and trust. It is important for clinicians to engage in cultural education and work to improve systemic deficiencies such as a lack of psychosocial support. An overarching theme was also the need for clinicians to seek to develop trustworthiness and earn trust when caring for AI/AN patients experiencing serious illness.

Hidden battles: Keeping cancer secret Harvard Health Publishing - Harvard Medical School; by Maureen Salamon; post is dated 4/1/25, retrieved from the internet 3/25/25 Some people choose to conceal their diagnosis and treatment. Here's why — and reasons that approach can sometimes backfire. ... [In addition to privacy motives, Cristina Pozo-Kaderman, a senior psychologist at Harvard-affiliated Dana-Farber Cancer Institute] says cancer patients may also wish to:

Why aging parents make DNR choices before crisis strikes Rolling Out 25; by Khalil Best; 3/17/25The conversation typically begins quietly. ... An aging parent mentions their desire for a Do Not Resuscitate order—commonly known as a DNR—and the atmosphere in the room shifts. For many adult children, this moment arrives unexpectedly, triggering complex emotions ranging from denial to grief. Yet these discussions, uncomfortable as they may be, represent one of the most meaningful exchanges families can share. Understanding why many elderly parents choose to sign DNR orders in advance illuminates not just practical healthcare concerns, but deeper values about dignity, autonomy, and what constitutes a meaningful life.

The twofold challenge of an older population — and how systems are adapting Becker's Hospital Review; by Kelly Gooch and Kristin Kuchno; 2/21/25 In less than a decade, older Americans are projected to outnumber children for the first time in U.S. history, sparking conversations about the need for age-friendly healthcare.  At the same time, declining birth rates and longer life expectancies — half of babies born in 2020 are expected to live past 100 years — pose potential workforce challenges. Becker's connected with four health system leaders to explore the challenges this demographic shift presents and how they are preparing to address it. [Click on the title's link to continue reading.]

North Texas doctor helps parents facing infant loss deal with the unimaginableCBS News - Texas; by Andrea Lucia, Lexi Salazar, Katie Standing; 2/25/25[Background story for parents Yvette and Thoms Ngo upon dealing with the news that their in-utero baby girl Zoe was diagnosed with Trisomy 13, would likely miscarry, or die soon after birth. Dr. Terri Weinman, their neonatologist offered rich palliative care interventions and support.] "When we met Dr. Weinman and her team the first time, she would say things like, 'So, what are we going to do when Zoey is here,' which changed my mindset completely," Yvette Ngo said. ... For the first time, the Ngos began to consider what Zoey's life, short as it might be, could look like. "It made us more comfortable with the situation, I mean as comfortable as you can be," Thomas Ngo said. "She just gave us hope." Zoey was born on April 18, 2024. She met her parents, her siblings and her grandparents. She was baptized. "They made us little crafts and mementos for us to take home, like footprints, really ways to help cherish Zoey's life," Yvette Ngo said. "They took her heartbeat and recorded it for us. Little things that we wouldn't necessarily think of." Zoey even had a chance to go home. But after 36 hours of life, Zoey passed away in her father's arms. The perinatal palliative care Zoey received remains rare. But for families like the Ngos, it provides a small sense of control when it's needed most. "Being able to plan so much in advance and think about all the different scenarios and how we wanted it," Yvette Ngo said. " I think, looking back on our time with Zoey..." "We wouldn't have done anything differently," Thomas Ngo said. Editor's note: Pair this with "Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing students," posted 2/24/25.

Care for patients with a history of immigrationJAMA; Margaret Wheeler, MS, MD; Juan Raul Gutierrez, MD; Alicia Fernandez, MD; 1/25Home to 20% of the world’s immigrants, the US is the leading destination for people leaving their birth countries, and the US Census estimates that almost 14% of the US population in 2022 was born outside the US. ... The 2023 US Preventive Services Task Force Guideline on screening for latent tuberculosis recommends screening for tuberculosis in patients from Latin America, the Caribbean, Africa, Asia, Eastern Europe, and Russia because in 2020, 71% of cases of active tuberculosis in the US occurred among individuals from these areas. Assessment of clinically relevant premigration factors involves consideration of the epidemiology of disease, health care practices, and sociopolitical and environmental exposures in an immigrant’s country of origin. These factors can alter risk assessment in differential diagnoses; for example, neurocysticercosis should be considered in the differential diagnosis of seizures in a patient from Central America.

Truth-telling, and ethical considerations in terminal care: an Eastern perspectiveNursing Ethics; Qing Ma; Yi Wu; Ronghua Fang; 1/25 Truth-telling for terminally ill patients is a challenging ethical and social issue for Chinese health care professionals. However, despite the existence of ethical and moral standards for nurses, they frequently encounter moral dilemmas when making decisions about truth-telling to patients with end-stage diseases in China. This article focuses on nursing morality, ethics, norms, and philosophy in health care and discusses countermeasures taken by nurses in truth-telling decision-making in combination with Chinese Confucian culture. The analysis identifies key ethical strategies tailored to Chinese nurses’ practices, emphasizing individual autonomy, cultural sensitivity, and family dynamics in truth-telling decisions.

How a St. Louisan helps her community navigate death by filling out advance directives NPR - St. Louis on the Air; by Jada Jones; 1/28/25 When Vivial Lopez’s grandmother was on life support, her family was faced with many difficult decisions. Her grandmother did not have an advance directive, so her family did not know her final wishes. The experience of navigating her grandmother’s end-of-life plan without any direction led Lopez to advocate for families to prepare advance directives - especially those in Black and brown communities. Approximately only on ein three adults complete an advance directive for end-of-life care. Lopez works with the Gateway End-of-Life Coalition to empower members of the St. Louis community to navigate death through quality end-of-life care.  Editor's note: Click here for AARP - Find Advance Directives Forms by State, also available in Spanish.