Literature Review

Hospice was meant to offer dignity in death — but it fails the most marginalized. We need hospice programs that go to the streets, into shelters, behind barsSTAT; by Christopher M. Smith; 8/26/25I’ve spent more than a decade in hospice care, sitting at the bedsides of people facing the final days of their lives. I’ve held hands in hospital rooms, in tents, in prison cells, and in homes that barely qualify as such. And over time, I’ve come to see that dying in America is not just a medical event — it’s a mirror. It reflects everything we’ve failed to do for the living. Hospice was created to bring dignity to the dying — to manage pain, provide emotional and spiritual support, and ease the final passage for people with terminal illness. But the systems surrounding hospice care are riddled with inequity. The very people most in need of compassion — the unhoused, the incarcerated, people of color, LGBTQ+ individuals, and people with disabilities — are systematically excluded, underserved, or erased. Access to a good death is too often reserved for the privileged, while everyone else is left to navigate a system that wasn’t built for them — or worse, actively works against them... The truth is, hospice care cannot achieve its mission unless it actively addresses the inequities built into the structures around it. We need hospice programs that go to the streets, into shelters, behind bars. We need training rooted in cultural humility, in antiracism, in trauma-informed care. We need to reimagine what it means to offer dignity to someone whose life has been defined by abandonment... Because dying is universal. But justice, even at the end of life, is still not.Publisher's note: STAT also references Dr. Ira Byock's article "The hospice industry needs major reforms. It should start with apologies, 8/22/23".

Flu, COVID-19 vaccination rates falling among health care workers WWLP, Springfield, IL, originally Boston, MA; by Alison Kuznitz; 8/14/25 The rate of Massachusetts health care workers vaccinated against the flu and COVID-19 is declining, despite state officials pushing for the vast majority of providers to get their shots in order to stunt the spread of illnesses. The Department of Public Health’s goal is to achieve an annual flu and COVID immunization rate of 90% or higher among eligible health care personnel at all licensed facilities and emergency medical services. ... During the 2024-25 respiratory virus season, an average of 83.5% of providers in acute care hospitals were vaccinated against the flu, ... That compares to ... 52.3% in nursing homes, 68.7% in rest homes, 52.2% in adult day health programs, 21.2% in EMS and 65.4% in hospice. Editor's Note: Is 65.4% high enough for health care workers who consistently tending many of the most vulnerable persons receiving health care? What are the vaccination rates for your organization? 

New report gives healthcare providers fresh guidance on communicating with older adults McKnights Long-Term Care News; by Donna Shryer; 8/7/25 A new report from the Gerontological Society of America reveals critical strategies for healthcare providers to improve communication with older adults, who now represent almost 17% of the US population. The comprehensive guide, titled “Communicating With Older Adults: A Review of What Really Works,” addresses the growing need for effective patient-provider interactions as America ages. Approximately one-third of adults aged 65 or more years have a disability that may affect communication, the report noted. 

Demystifying dying in end-of-life-care: A phenomenological perspective Death Studies; by Elisabet Sernbo, Magnus Weber, Charlotta Öhrling, Stina Nyblom; 8/26/25 This article focuses on experiences of the process of dying. The empirical material consists of interviews with patients in palliative care and their significant others. The analysis draws attention to the lived experiences of the participants - embedded in time, identities, social relations, and everyday lives - and to how the possibility of sense-making is conditioned by the lifeworld. ... [This] needs to be understood as reorienting work: supporting people when their lines become disrupted or need to be altered. This requires a display of radical empathy ...

Grief and the road to resilience Jewish Journal; by Chaim Steinmetz; 8/2/25 Mourning is unfashionable. A popular platitude is that funerals are meant to be a “celebration of life.” This seemingly innocuous phrase is actually a subtle form of peer pressure, demanding the heartbroken mourners remain upbeat so they don’t drag the mood down for the rest. The bereaved are counseled to look for “closure” and find a way to continue with their lives. ... This is a picture of mourning done wrong, an unwillingness to encumber one’s heart with the ugly and unruly emotions of loss and bereavement. Judaism emphasizes the importance of mourning; it affirms an ethics of memory, which obligates us to continue to honor our deceased family and friends. It is unthinkable for someone to pass away and for everyone else to just “move on” afterwards. Love demands that we mourn. Beyond the moral imperative, Judaism recognizes that mourning is transformative. Grieving is the first step towards resilience.

Why more seniors are going broke in the last 5 years of life SavingAdvice.com; by Riley Jones; 7/27/25 ... According to recent data, more seniors than ever are entering the last five years of life with little to no savings, and some are accumulating serious debt. Despite years of work, careful budgeting, and modest living, the final chapter of life is becoming one of the most financially devastating. ...

When grief involves trauma − a social worker explains how to support survivors of the recent floods and other devastating losses The Conversation; podcast by Gemma Ware with Dr. Liza Lane; 7/17/25 The July 4, 2025, floods in Kerr County, Texas, swept away children and entire families, leaving horror in their wake. Days later, flash floods struck Ruidoso, New Mexico, killing three people, including two young children. ... When death is sudden, violent, or when a body is never recovered, grief gets tangled up with trauma. In these situations, people don’t only grieve the death. They struggle with the terror of how it happened, the unanswered questions and the shock etched into their bodies. I’m a social work professor, grief researcher and the founder of The Young Widowhood Project, a research initiative aimed at expanding scholarship and public understanding of premature spousal loss. Both my personal loss and professional work have shown me how trauma changes the grieving process and what kind of support actually helps. To understand how trauma can complicate grief, it’s important to first understand how people typically respond to loss.

Caring for a difficult elderly parent during a transitionPsychology Today - Caregiving; "Personal Perspective" by Franne Sippel, EdD, LP; 7/21/25 I am the only child of an only child who lives in an assisted living facility thousands of miles away. I unofficially diagnosed Mom with obsessive-compulsive personality disorder after struggling for years with a relationship fraught with guilt and frustration. ... It’s difficult enough to care for a frail parent when their health is failing. However, the added OCD personality, with its micromanaging, rules, and demands, tests patience beyond compare.  ... A good friend suggested I call hospice to evaluate her. Jim, a hospice RN in his 70s, arrived and instantly assessed the situation with laser-like precision. ... I spend many months going back and forth between South Dakota and Arizona to see my mom. Hospice continues to visit her three to four times a week at the assisted living facility, and a dear family friend also visits her several times a week. ... Editor's Note: Keep reading this article to its end. The insightful, practical, sensitive care from these hospice clinicians generated life-long transformations for this burdened caregiver-daughter. 

Opinion: My health and my politics walk into a doctor’s office … The Washington Post; by Kim Fellner; 7/16/25 [Note: Access is behind a paid firewall, with an option to set up a temporary free account]... My palliative care doctor and I have almost nothing in common. We’re still learning from each other. ... It began simply enough. By October, my sarcoma had moved from possibly curable to definitively terminal, and, since metastasis to the bones can be painful, my anchor oncologist offered to connect me with a palliative care doctor to help with the physical and conceptual aches and pains of dying. Which seemed like a good thing to do. ... I did not anticipate, however, that the personal and the political would collide in my doctor’s office. ... [Descriptions unfold of significant, conflicted dialogue between (1) this Jewish daughter of holocaust survivors whose life-long vocation was social justice and (2) this Christian palliative care physician who asked about mental health and then dismissed this person's primary concerns that were affecting her dying.] ... Clearly, my doctor and I shared some beliefs about the importance of the palliative approach. ... But as the doctor noted, the best palliative care goes beyond the purely physical to address the more cosmic questions of life and death, and I was uncertain we were well matched as partners for this intimate process. ... I had no idea how to proceed. ... [More descriptions.] ... And that’s where the magic happened. Within a few days, my palliative care doctor sent me back a transparent, thoughtful and moving response. ... Her courage and openness, her willingness to risk a forthright response, have precipitated a remarkable dialogue about what each of us brings into the room, and how we can honor the space and each other once we get there. ... Editor's Note: Whatever one's political or religious stance, this article is sure to spark fireworks—of conflict, dissonance, and, hopefully, powerful insight. I encourage readers to engage with it attentively, attuned to three things:

‘Family’s Voice Diary’ improved support for caregivers of patients at the end of life Oncology Nurse; by Ryner Lai; 7/1/25 The authors of this study sought to understand the challenges that caregivers face when a patient is approaching end of life. For this study, they worked with bereaved relatives, members of the public, healthcare professionals, and policymakers to develop the Family’s Voice Diary (FVD), an initiative that allowed participants to freely express their thoughts regarding end-of-life care and the role of caregivers. ... These interviews illuminated some of the challenges that were faced when providing end-of-life care. For example, families expressed a lack of knowledge regarding what “normal” dying looks like and they wanted more support from healthcare staff, but were reluctant to ask or didn’t know how to approach the subject. Healthcare professionals themselves appeared to be reluctant to discuss matters associated with death. 

“Her toes fell off into my hand”: 50 moments that changed healthcare workers forever BoredPanda; by Dominyka; 6/18/25 When we go through traumatic events, our brain can shut out feelings and thoughts as a way to protect us from emotional or physical damage. This can make people go numb in stressful situations, so our bodies have time to figure out the best course of survival.  Healthcare workers are frequently exposed to traumatic experiences, so when they were asked what event made them go permanently numb, they shared many devastating stories. Scroll down to find them below, and don’t forget to share similar ones if you have any. 

Healing hearts: How palliative care staff reunited a father with his daughters after nearly 40 years apart The Daily Scan - Cancer; by Sondi Bruner; 11/25/24, published in our newsletter 11/25/24Leah Duval and Tanya Ellis don’t have many childhood memories of their father. They recall fragments, like his bright smile and building snowmen in the backyard. And then one day, when they were three and five years old, Glenn Ellis disappeared completely. ​As the girls grew up, they learned their father had schizophrenia, which they guessed played a large role in his disappearance. ... The family searched for years in the 1980s and never found him. The sisters had no choice but to move forward with their lives, though they never gave up hope that their father was still out there. ... Then, on May 14th 2024, nearly 40 years after their father vanished from their hometown in Ontario, Tanya received an unexpected phone call from across the country. It was from Siobhan Gallagher, a social worker at May’s Place Hospice in Vancouver, BC. She had a patient named Glenn Ellis, and he was looking for his daughters. [Click on the title's link to read this story.] ... “People can hold onto grudges for their entire life and they don’t allow healing to happen,” says Tanya. “Have an open heart and an open mind. Just let things go, because we’re just all humans trying to do the best we can in this world.”

Hospice staff at UVM Home Health and Hospice vote to form union Vermont Biz - Vermont Business Magazine; by Tim, The University of Vermont Health Network - Home Health & Hospice; 6/6/25 After six months of organizing, a majority of the roughly 85 Hospice staff at UVM Home Health and Hospice voted Thursday to formalize their union. Hospice United will represent Nurses, LNAs, Social Workers, Chaplains, Bereavement Coordinators, Volunteers Coordinators, Cooks, and Admin Support in both the McClure Miller Respite House and the community-based team. ... With a 88% voting yes, this victory marks the establishment of union representation at every one of UVM Health Network’s seven locations. Once the votes are certified, staff will begin the process of bargaining their first contract with the UVMHN administration.