Literature Review

As I held my dying daughter’s hand, what did I feel? Immense pride in a young woman who – despite a lifetime of complex special needs – taught us that perfection comes in many different guises Express Digest - DailyMail.co.uk; 2/7/25 As I held my dying daughter's hand, what did I feel? Immense pride in a young woman who – despite a lifetime of complex special needs – taught us that perfection comes in many different guises. ... There is no doubt that without her, our own lives might have been easier and much less of an emotional roller-coaster – yet they would also have been so much poorer. For she introduced us to the richness of worlds and wonderful people that we might never have encountered without her.  ... Iona showed that life was for living, despite her disabilities and health struggles. She fuelled my compassion, smoothed my sharper edges and gave me courage ...

What we talk about, or not, when talking about death Enumclaw Courier-Herald; by Wire Service; 2/9/25 Death is a guarantee for everyone, so why do people shy away from talking about it and using words like death and dying? ... As a death doula and grief coach, Kathleen Putnam hopes that providing care to those who are grieving can help change the language surrounding death. ... Putnam explains that in present society, people want to avoid grief and pain. With medical advancements and industries and marketing systems focusing on keeping people alive, the rhetoric surrounding dying has become negative. Putnam also pointed out that instead of using phrases like “they died” or “they’re dying,” other phrases like “pass away” and “they went to sleep” have become popular when talking about a loss.

Family caregivers who support older relatives are on the rise due to aging-in-place preferences HousingWire; by Chris Clow; 2/5/25 The number of family caregivers who support older relatives in either home-based or residential care settings increased by 32% between 2011 and 2022 ... Researchers also say this could be partially tied to rising preferences for aging in place. This is according to a joint study from the Johns Hopkins Bloomberg School of Public Health and the University of Michigan’s Institute for Social Research. Additional support came from the National Institute on Aging, a division of the National Institutes of Health (NIH). The raw number increase went from 18.2 million in 2011 to 24.1 million in 2022. The study also found that the number of care hours provided by family and other unpaid caregivers increased by 50% during that time. The average number of weekly hours for such care stood at 21.4 in 2011, but it jumped to 31 in 2022, nine hours short of what is widely considered a full-time weekly work schedule.

Garlock: How to prepare children for hardships and tragedies The Citizen; by Dr. Victor Garlock; 2/4/25 All of us must face hardships and tragedies. How well we are able to get through difficult times is a major factor affecting the overall quality of our lives. Sometimes these challenges arrive individually, as in a sudden serious illness, an accident, or the death of a loved one. Sometimes — as in last fall’s devastating floods in North Carolina or the recent wildfires in Southern California — entire communities must find a way to move forward. ... Resilience is the capacity to recover from challenges and adversity. Tragic optimism is the determination to remain optimistic and find meaning and purpose in the face of tragedy. [With children:]

Shameless star Justin Chatwin had a pivotal Law & Order role in a heartbreaking episode NBC; by Jill Sederstrom; 1/30/25 Attorney Nolan Price found himself at odds with his brother, played by Chatwin, as the siblings were forced to make a painful decision. ... Justin Chatwin — who rose to fame on the hit comedy-drama series Shameless — took on the role of Thomas Price, the brother of Executive Assistant District Attorney Nolan Price, in “The Hardest Thing" episode, which premiered on January 30, 2025. The siblings disagreed about how to handle their father’s failing health. ... The brothers had to decide whether they wanted to put in a feeding tube, which could prolong their dad’s life by a few months, or “manage his pain levels” to “make his passing as comfortable as possible," a doctor explained. 

The Handbook of LGBTQIA-inclusive Hospice and Palliative Care, 2nd edition Review in Ageing & Society, published online by Cambridge University Press; book authored by Kimberly D. Acquavia, review authored by Luis Stoisser; 1/23/25 The Handbook of LGBTQIA-inclusive Hospice and Palliative Care is a comprehensive guide to providing inclusive palliative and hospice care to everyone, regardless of their self-identification. Following the author's belief that LGBTQIA+ hospice and palliative care requires change at three levels - individual, institutional and systemic - the book extends state-of-the-art palliative and hospice practices (US focused) by including LGBTQIA+ perspectives. Such a rethinking educates hospice and palliative care practitioners on how to provide person-centered care, how to be self-reflexive on a daily basis and how to handle their own stereotypes and stigmas. [This book is available via Columbia University Press and Amazon.]

Concurrent Care Collaborative a safety net for pediatric patients Noozhawk, Santa Barbara, CA; by Easter Moorman; 1/26/25 Partners for Kids has initiated Santa Barbara County’s first Pediatric Concurrent Care Collaborative designed to offer comprehensive, compassionate, and coordinated care to seriously ill children from birth to 21 years of age. Spearheaded by Kieran Shah, president/CEO of VNA Health, and Rebecca Simonitsch, Quality Initiatives Program manager for Cottage Health, nine local organizations have joined to create a safety net for pediatric patients and their families to help them receive care close to home. The groups are: CenCal Health, Central Coast Home Health & Hospice, Cottage Children’s Medical Center, Dignity Health, Hearts Aligned, Herencia Indígena, Hospice of Santa Barbara, Teddy Bear Cancer Foundation, and VNA Health. 

Children’s book written by Manheim Township mother finally published 3 years after she died of cancer [video] LNP Lancaster Online, Lancaster, PA; by John Walk; 1/27/25 As she battled a rare sarcoma cancer over the last two years of her life, Manheim Township resident Ginny McCreary struggled to find a children’s book she could read to her two young daughters to help them better understand what she was going through. So McCreary wrote the book herself, sometimes on a smartphone while laying in bed late at night, ... McCreary died Aug. 15, 2021. She was 34. She left behind a self-published manuscript of the children’s book that sat idle for about two years but was not forgotten. ... The book has also made its way inside four Hospice & Community Care locations in Lancaster as well as Penn Medicine’s Ann B. Barshinger Cancer Institute in East Hempfield Township. [Video with Ginny's mother] "I'd love to get it to some cancer centers and hospice centers ..." [Click on the title's link for more information.]

Dying at home: A family guide for caregivingJohn Hopkins University Press; by Andrea Sankar with CM Cassady; 2/24A comprehensive guide for those caring for a loved one nearing the end of life. Many people seek the comfort and dignity of dying at home. Advances in pharmacology and hospice care allow the dying to remain at home relatively free of pain and symptoms, but navigating professional services, insurance coverage, and family dynamics often compounds the complexity of this process. Extensively updated and revised, this third edition of Andrea Sankar's Dying at Home: A Family Guide for Caregiving provides essential information that caregivers and dying persons need to navigate this journey.

Free Death Cafés provide a venue for difficult conversations The Northern Virginia Daily. Stephens City, VA; by Brian Brehm; 1/20/25... Blue Ridge Hospice, in partnership with Bowman Library, wants to spark the death-related conversations that many people want to have but are comfortable initiating. Starting this month, the two organizations will be hosting a Death Café on the fourth Thursday of every other month. ... According to a media release from Blue Ridge Hospice, “Death Café is not a grief support group or a counseling session, but rather a casual and welcoming space for people to reflect on death-related topics, with the aim of helping us live life more fully. Whether you’re curious, thoughtful or seeking meaningful conversation, come as you are and engage in this judgment-free, agenda-free discussion.”

New data reveals the hidden costs of workplace violence in healthcare Perceptyx; by Ellen Lovell, PhD and Stephanie Schloemer, PhD; 1/17/25 Workplace violence has become an impossible-to-ignore crisis in healthcare, threatening the safety of medical professionals, patients, and institutions. The severity and frequency of these incidents have reached alarming levels, demanding immediate attention and action. ... The human cost is staggering.  ... While our research confirms the widespread nature of safety concerns in healthcare, a deeper analysis reveals significant variations across different healthcare environments and roles. This granular view helps us understand where intervention is most urgently needed. Editor's note: Although "hospice settings reported the lowest agreement at 54%," this statistic should be considered too high for comfort. Actions need to be taken to reduce it. From your professional leadership role, examine the importance of protecting hospice professionals' safety--typically in home settings--and through moments such vulnerable, emotional, conflicted times within families. What can your agency improve?

For 27 years, I had minimal contact with my abusive mother. Then she moved in with me. HuffPost; by Carole Brodsky; 1/20/25 ... Living with my mom was the last thing I ever thought I’d be doing as an adult. Perhaps I accepted her back into my life because there were no other options available. Perhaps it was because I was the daughter of someone who in today’s vernacular would be called a “tiger mom,” and I’d been taught caring for an aging parent was what “good daughters” did.  ... As a child, my mother was abusive.  ... [Now, as] Mom’s verbal skills declined, we had to use our eyes, guts and hearts to discern the needs of a person whose tether to this world was fraying before our eyes. ... My partner has a saying: I always forgive, but I never forget. I have unequivocally forgiven my mother for everything. I have tried, with varying degrees of success, to let the vestiges of her abuse die with her and not invade the lives of my children, grandchildren and now, great-grandchildren. The work on forgiving myself will continue for the rest of my life.

‘Those who have made death their life’ Part 2: Family The Daily Yonder - Keep It Rural; by Hannah Clark; 1/16/25 Hannah Clark spent six months riding along with the nurses and certified nursing assistants (CNAs) of Hearth Hospice who provide in-home care to those living in Northwest Georgia and Southeast Tennessee. These hospice workers often drive up to a hundred miles a day to visit a handful of patients scattered across the Appalachian landscape in both rural towns and urban centers. What will follow this introductory essay is her photo reportage in three parts, documenting what she has witnessed accompanying these caregivers. The intimate portraits and vignettes show tender moments at different stages towards the end of one’s life. Their beauty lies in the companionship Clark captured in moments of need and vulnerability. Editor's note: Click here for Part 1, which we posted 1/16/25.