Literature Review

Wind phones help the bereaved deal with death, loss and grief − a clinical social worker explains the vital role of the old-fashioned rotary phone The Conversation; by Taryn Lindhorst; 9/20/24 My mother died in my home in hospice in 2020, on the day my state of Washington went into COVID-19 lockdown. Her body was taken away, but none of the usual touchstones for grief were available to our family. ... As a clinical social worker and health scholar with 40 years of experience in end-of-life care and bereavement, I knew that I needed some way to tend to my grief for my mother. While in lockdown, I began looking for resources to help me. Then I heard about the wind phone. What is a wind phone? At its simplest, a wind phone is a rotary or push-button phone located in a secluded spot in nature, usually within a booth-type structure and often next to a chair or bench. The phone line is disconnected. People use the wind phone to “call” and have a one-way conversation with deceased loved ones. Here they can say the things left unsaid. Wind phones offer a setting for the person to tell the story of their grief, to reminiscence and to continue to connect to the person who is gone. For many, it is a deeply moving, life-affirming experience. About 200 wind phones are scattered throughout the United States. Editor's note: This creative tool is similar to common clinical tools of writing a letter to the deceased person, and the "Empty Chair" technique. Caution: This should never be used as a gimmick. This can be terribly confusing and upsetting for persons with dementia, or supportive if used with professional sensitivity for the patient's awareness and experience. For persons with dementia, be familiar with the ground-breaking "Validation Therapy" techniques by Naomi Feil. 

Former M&S chairman: ‘Planning for my wife’s death with her made it easier to cope’ The Telegraph; by Leah Hardy; 9/17/24 When Patricia Swannell was diagnosed with incurable breast cancer, she planned both how she wanted to die and her legacy beyond the grave. On the first anniversary of her death, Patricia’s husband Robert speaks about her “beautiful” death, how she achieved it, and how it has helped the family in their grief. [Robert Swanell tells their story with the following key themes.]

Bittersweet bouquet: Hospice worker transforms her grief into a garden of memories ABC 13, Grand Rapids, MI; by Matt Gard; 9/5/24For the most part, Kaitlyn Dawson’s desk at the Emmanuel Hospice office is exactly what you’d expect it to be. On her left, she has office supplies, ... but it’s what’s on the wall over her left shoulder that really gives this workspace character. Inside three separate picture frames are hundreds of flowers. Kaitlyn was an art major at Grand Valley State University before she switched to social work, and she still has a passion for creativity. Every one of those flowers – whether red, purple or orange - was her creation. ... “These flowers represent patients that I have been able to be a part of their journey at end of life,” said Kaitlyn, who has worked in hospice for about four years. “I had one particular case that was really difficult, and I remember leaving that visit and thinking ‘I'm going to start doing this process in honor of her.’ And I went to the store and I bought pencils and a notebook and decided I was going to do flowers. It was easy. It was simple. It was something I could sit down and do in the evening, and if I lost a couple of people that day, I could draw a couple of flowers.” Before Kaitlyn knew it, she had a "bittersweet bouquet."

Hoffmann Hospice to host Grief Support Camp for Children of first responders KGET Bakersfield, California; by Jaspreet Multani; 8/29/24 Hoffmann Hospice will host its second annual free grief support camp for children and teens of first responders on Saturday, Sept 14, 2024. The event called “A Heart for Hero’s Art Camp,” provides a safe space for young people grieving the loss of a loved one such as a parent, sibling, or grandparent. ...  Led by experienced grief counselors, the camp offers therapeutic activities and support to help children express their grief in a nurturing environment. ... “We have a huge heart for kids, especially those who put themselves on the line for us every day,” said Ryan D’ Amato of Hoffmann Hospice.Editor's Note: While many hospices provide excellent grief camps for children and teens, this one stands out for tending the unique experiences for families of first responders. Many of these deaths will have been sudden and tragic--without hospice care--and often more complex to grasp and grieve. Hoffman Hospice's website indicates support for other non-hospice deaths: Miscarriage, Still Birth or Sudden Loss; Suicide. Bravo and thank you to Hoffman Hospice and other hospices who utilize your grief services to support your larger communities through often-disenfranchised deaths and grief.

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort reviewPediatric Blood and Cancer; by Sarah Daniels, Nelson D Franqui-Rios, Suraj S Mothi, Elizabeth Gaitskill, Kathryn Cantrell, Erica C Kaye; 8/24Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. [In this study] fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely ... to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely ... to receive interventions compared to patients who passed away at SJCRH [St. Jude Children's Research Hospital] locations. Hispanic patients ... and those in palliative care ... were more likely to receive interventions.

Bereaved parent preferences on quality end-of-life care for children with cancer in the South Cancer - American Cancer Society; by Isaac Martinez BA, Erin Currie PhD, RN, Elizabeth S. Davis MS, Rohail Kumar MD, Valerie Lawhon MS, ALC, NCC, Jennifer M. Snaman MD, Raba B. Tefera BA, Smita Bhatia MD, MPH, Abby R. Rosenberg MD, MS, MA, Emily E. Johnston MD, MS; 8/18/24 The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. ... Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8–4.0]). Instead, parents considered their child’s desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child’s EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care ... and chemotherapy ... at EOL.

Familial loss of a loved one and biological aging: NIMHD Social Epigenomics Program JAMA Network Open; by Allison E. Aiello, PhD, MS; Aura Ankita Mishra, PhD; Chantel L. Martin, PhD; Brandt Levitt, PhD; Lauren Gaydosh, PhD; Daniel W. Belsky, PhD; Robert A. Hummer, PhD; Debra J. Umberson, PhD; Kathleen Mullan Harris, PhD; 7/29/24Is the experience of losing a loved one associated with accelerated biological aging? In a cohort study of 3963 participants from the National Longitudinal Study of Adolescent to Adult Health, nearly 40% experienced the loss of a close relation by adulthood. Participants who had experienced a greater number of losses exhibited significantly older biological ages compared with those who had not experienced such losses. These findings suggest that loss can accelerate biological aging even before midlife and that frequency of losses may compound this, potentially leading to earlier chronic diseases and mortality.

Loss of a loved one early in life may accelerate aging: StudyThe Hill - Health Care; by Miranda Nazzaro; 7/29/24 The experience of losing a loved one early in life could make a person age faster, according to a new study published Monday in the Journal of the American Medical Association. ... Losing a parent or sibling early in life can often be traumatic, causing mental health or cognitive issues, higher risks of heart disease and earlier mortality, researchers noted, adding repeated losses can increase the likelihood of heart disease, dementia or mortality. ... “Future research should focus on finding ways to reduce disproportionate losses among vulnerable groups. For those who experience loss, providing resources for coping and addressing the trauma is essential.”Editor's Note: Click here for the study, "Familial Loss of a Loved One and Biological Again: NIMHD Social Epigenomics Program." Calling all executive leaders who decide staffing and resources for your hospice's bereavement services: examine the long-term mission of your bereavement services for (1) children and teens, (2) young adults, (3) persons with racial and ethnic disparities. 

Caregivers of end-of-life patients reveal the last words they hear most often and the most common regrets from patients WhatsNew2Day; by Alexander; 7/27/24... While each person’s final moments are different, chaplains and palliative care nurses have said most people approach their death with “radical acceptance.” People who are actively dying also often have a new sense of clarity about the universe and may even have a temporary burst of energy or sudden moments of clarity if they have dementia. The last words patients usually say to their families are to tell them they love them... [Often, people] who are in the midst of dying want to be surrounded by their loved ones and pets. Their final words are often words of love and pleas for forgiveness, as well as expressions of regret, ... [Another described that people show] "a desire for connection" with loved ones and faith. Editor's Note: This article provides a balanced scope of descriptions from several professionals, notably Catherine Duncan, Annemarie Switchulis, Neal Shah, and Zackary Price. In this day of social media, some hospice professionals (past or present) tout definitive, authoritative descriptions of what all dying persons experience, with too many assumptions and generalizations. Beware what you read and distribute, especially if the tone and language (of other articles) are sensationalized in a way to garner social media "expertise," followers and Shares--at the expense of more balanced, sensitive, diverse, personalized experiences.

‘My sibling died and my parents never talked about her again’ The Telegraph; by Steph Clarkson; 7/20/24 Julia Martin has few memories of her sister Karen, but remembers the last time she saw her. “She was five years old. I was seven. We were playing on the swing in the park. Then she went off to the hospital with Mum and Dad for a scheduled operation. “She never came home.” Losing a sibling is tragic enough, but for Julia the death of her sister following an operation to repair a hole in the heart was just the start of years of trauma. “I remember my father telling me Karen had died,” says Julia, ... “But that was it. There were no hugs, no comforting words. “Mum barely came near me. She tucked herself away. I had no other siblings to talk to. I was alone.” Things got worse as Julia’s parents built a wall of silence around their loss: ‘‘I wasn’t taken to see Karen in the hospital, I was kept away from the funeral, so there was no closure,” she says.

I though my love for climbing died with my husband. I was wrong. Climbing; by Olivia Jordan Cornelius; 7/18/24 What do you do with someone’s climbing shoes when they die? I hadn’t thought about it. After all, my husband, Cam, was 34 and still should have had many years of climbing ahead of him. ... On the shoe rack, they sat as a reminder of the future I had imagined we’d have. Too intimate to give away and too painful to keep, I wrapped them in newspaper and put them in the garbage outside. Then I came back to our apartment and hid my pair in the hallway cupboard. ... Our once-adventurous life together ended in a stuffy hospice room. ... [Click on the title's link for this powerful story of navigating young widowhood.]

Bereaved families face ‘devastating’ impacts of hospice fraud Hospice News; by Holly Vossel; 7/16/24 Fraudulent activity in the hospice space may be leaving some families without sufficient bereavement support. Fraudulent hospice schemes can take a tremendous toll on families that have lost loved ones who received poor or negligent end-of-life care, according to Cheryl Kraus, director of government affairs and policy at the Hospice & Palliative Care Association of New York State (HPCANYS). ... “It’s tragic if you’re already grieving the loss of a loved one to have your suspicions confirmed that they did not receive the level of care that they were entitled to because of bad actors in the hospice space,” Kraus said. “It just shocks the conscience what these fraudulent hospices are doing to people. It’s going to take a long time to restore not just the individuals’ trust who have experienced this firsthand, but also the public’s.”