Literature Review

'A blessing': Hospital beds find new homes in families who had been praying for them Austin American-Statesman, Austin, TX; by Nicole Villalpando; 12/13/24 Ron McDaniel had been trying to find a place for the hospital bed both his dad, Robert, and brother, Gary, had used in the assisted living facility where they were before they died. His father was a Navy veteran who was burned over 30% of his body during World War II. His brother had severe brain damage from a car accident in 1976 and was a quadriplegic. The electronic hospital bed with the extra comfortable mattress and the trapeze bar needed a new home. Ron McDaniel wanted it to go to a veteran or a veteran's family because it originally came from the Veterans Affairs, but he tried organization after organization with no luck. Meanwhile, Sandra Daniels was in desperate need of a hospital bed for her mother, Bertha Woodward, 87, who has heart failure, problems with her kidneys and limited mobility caused in part by neuropathy in her feet. Daniels could not afford a hospital bed but had been trying organization after organization for a year and came up empty. She had recently called AGE of Central Texas to see if they might have a hospital bed. ...Editor's note: Organizations who helped include 26th Statesman Season for Caring, Austin Palliative Care, ATX Firefighter Moving, AGE of Central Texas.

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.

A call to action for business leaders in health care: Prioritizing employees’ mental health is a necessity Las Vegas Sun - Veagas Inc; Guest column by Karen Rubel; 12/9/24 As mental health continues to be recognized as a vital component of overall well-being, businesses—especially those in health care—must stay vigilant and proactive in addressing mental health challenges within the workplace. The importance of this issue has never been greater,  ... In a hospice setting, the emotional toll on caregivers is significant. Health care workers often form close bonds with their patients and their families, and the loss of a patient can be deeply affecting. At Nathan Adelson Hospice, our teams regularly come together to review patient care plans, but they also take time to discuss their personal experiences and challenges. These discussions provide an opportunity for our staff to offer mutual support and care. This peer-to-peer connection fosters a sense of community and helps staff process their emotions in a healthy way. ...

Washington Paid Family and Medical Leave & Job Protection - Final Legislative Report University of Washington, Daniel J. Evans School of Public Policy & Governance; Lead investigator Heather D. Hill, MPP, PhD, with Tom Lindman, MPP, Diane Rucavado, MPA, and Elizabeth Ford, JD; 12/1/24 This research was funded by ESSB 5187. Additional support for data access and analyses for this research came from the UW Data Collaborative funded by the UW Population Health Initiative, UW’s Student Technology Fee program, the UW’s Provost’s office, and Eunice Kennedy Shriver National Institute of Child Health and Human Development research infrastructure grant, P2C HD042828 to the Center for Studies in Demography and Ecology at the University of Washington. The content is solely the responsibility of the authors.

Hospice of Baton Rouge: New grief center opens offering vital support and healing Unfiltered With Kiran, Baton Rouge, LA; by Megan Kelly; 11/25/24 As the holiday season approaches, a time often filled with joy and togetherness, it can also be a profoundly challenging period for those experiencing grief. The Hospice of Baton Rouge has recognized this need and has transformed a property into a haven of healing: The Retreat at Quarters Lake. This newly established grief center aims to address the significant gap in resources for grieving individuals, a void that became especially apparent during the COVID-19 pandemic. “The Retreat at Quarters Lake provides hope, healing, and connectivity for the grieving through counseling, support groups, alternative grief therapies, and community education,” reads a statement on their website. The facility offers both traditional grief services, such as individual counseling and support groups, and unique, holistic approaches that include art therapy, music therapy, and pet therapy. The goal is to provide a comprehensive support system that caters to individuals of all ages and backgrounds. “We are focusing on some alternative therapies like yoga, meditation, gardening, and even fishing,” said Catherine Schendel, CEO of The Hospice of Baton Rouge. “We want to utilize the beautiful landscaping here to offer non-traditional grief support as well.” 

Family caregivers deserve to be a valued part of the healthcare continuum MedCity News; by Cara McCarty Abbott; 11/20/24 Family caregivers are a critical part of the healthcare system. Not only are they part of America’s safety net, but they are also critical partners to hospice providers when caring for loved ones with serious illnesses or at end of life. With 53 million U.S. caregivers actively involved in healthcare decisions for their loved ones, enhancing support for these caregivers can contribute to patient clinical outcomes and improve a sense of well-being among families facing a difficult experience. ... When caregivers aren’t supported, it’s not only the people who suffer; it’s also the organizations that they most interact with during the caregiving process. ... Hospice providers cannot turn this tide alone. This complex, systemic issue requires a comprehensive approach. ...

Stewarding loss Stanford Social Innovation Review; by Camille Acey; 11/19/24 - "Winter 2025" What happens when organizations and institutions need to die? And why is this part of the work often overlooked in systems change and social innovation practice? ... Stewarding Loss is a field-building initiative focused on the process of closure, ending, and dismantling as a journey to be designed. Over the course of several years, Stewarding Loss has engaged in a range of activities, from creating “loss circles” as spaces where people anticipating organizational closures can come to share stories and concerns; to conducting interviews with a range of practitioners involved in end-of-life care, including ritual and ceremonial hosts, grief therapists, and death doulas so we could learn how to translate practices across different contexts; to hosting roundtables with philanthropic foundations and speaking at numerous events to allow us to gather insight and feedback regarding ideas and needs for this work; to prototyping a Farewell Fund to learn what type of invitation and application might encourage organizations to become proactive about closing, and what supports might be needed by people on the journey to closure.

'My charity wedding dress brought me closer to Mum' BBC, Manchester, United Kingdom; 11/16/24 Like many brides, when Jo Johnson started planning her wedding, she wanted her mother to be an integral part of the day. But as June Kiely had died nine years earlier, she faced a puzzle as to how to bring her into the ceremony, until she realised there was a way of both feeling closer to her mum and honouring those who cared for her in her final days. June Kiely died at the St Ann's Hospice in Little Hulton, Salford, in 2015, and in the run up to getting married, Jo found herself at the charity's bridal and vintage shop in Stockport. The 38-year-old said it was a "magic moment" as she knew instantly it was the place where she would find the perfect dress. Jo said getting her dress from the shop was "a really special way to include my mum but also to give back to the hospice for everything they'd done." She said the hospice had given her mum "incredible care" and as soon as she walked into the shop, she knew she was "doing the right thing."

Death is a natural part of life, but our society struggles to support those who are grieving. Iowa Public Radio (IPR); host Charity Nebbe; 11/14/24 After a profound loss, the instinct is often to try and ease the pain for those who are grieving, but grief counselor Lynette Jordan says the pain of grief needs to be felt. This hour, host Charity Nebbe speaks with Jordan as well as mother and son Brianna and Grayson Wills about how they developed an open dialogue of grief in the seven years since the death of Grayson's twin brother, Calder. She also speaks with CL Lepley, who through experiencing many difficult losses since age five has become an expert in supporting those who are grieving. Guests:

[England] Woman doing race for hospice that helped husband BBC News; Lorna Bailey and Andrew Dawkins; 11/4/24 A woman is taking part in a 120km (75-mile) race over four days through the deserts of Jordan for a hospice that helped care for her husband. Charlotte Rochenard-Taylor, from Warwick, said running became a way for her to cope with grief, after Jamie died from a brain tumour in June last year. She is participating in the Marathon des Sables to raise money for Myton Hospice, which has sites in Coventry, Warwick and Rugby. Ms Rochenard-Taylor said it was "just a way to keep alive, if that makes sense, getting again out of my comfort zone to just feel like fully alive". One of her husband's last wishes was to die at home, stated the runner, who made it her "mission for this to happen". She added: "Thanks to the Myton Hospice, the at-home team... that was made possible." ... "I [found] that running actually became for me a way to cope with the grief, just to get out there and just get the rage out and just... mental wellbeing really." Ms. Rochenard-Taylor, who broke her pelvis a few years ago, said the charity was close to her heart, and the race starting on Tuesday was an ideal way to support it.

Creating death box eases stress, brings 'peace of mind' to those left behind BradfordToday.ca, Canada; by Andrew Philips; 10/26/24 Creating a death box might sound like sort of a morbid thing to do, but it’s vitally important. That’s according to Tammy Vaters, supportive care coordinator at Hospice Huronia-Tomkins House, ... who leads upcoming workshops on creating a death box or a “legacy box or final wishes box” for those uncomfortable with the more succinct terminology ["death box"]. ... Besides end-of-life wishes, Vaters says the box can include photos that someone would like displayed at a celebration of life or similar offering along with personalized letters to family and friends and personal mementos that have special meaning. “It gives you more opportunities of expressing how you feel about somebody,” she says, noting the boxes should also contain usernames and passwords that may aid one's loved ones after death. “They can be more thoughtful and personal.” Vaters, who is a specialist in thanatology (the study of death, dying and bereavement), says people will often use another term for death. 

The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons Springer Nature Link - Open Access; by Gülay Ate, Michaela Hesse and Henning Cuhls; 10/25/24Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. ... Conclusions: The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents. Editor's note: While this service and this evaluation are located in Germany, it can be replicated easily with today's user-friendly technologies. First and foremost are patient empowerment, privacy, and ownership of these most personal messages. Examine using your spiritual care, social work, and/or grief counselors to facilitate this project.

[Netherlands] The spiritual dimension of parents' experiences caring for a seriously ill child: An interview studyJournal of Pain and Symptom Management; by Marije A Brouwer, Marijanne Engel, Saskia C C M Teunissen, Carlo Leget, Marijke C Kars; 10/24The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.