Literature Review

Families value flexibility and compassion in end-of-life care for children with cancer Hematology Advisor; by Megan Garlapow, PhD; 12/12/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.

[Wales] Man fulfils dying wish accompanying daughter down aisle BBC Wales News, Wales, United Kingdom; by Jenny Rees; 12/10/24 A terminally ill man was able to fulfil his dying wish to accompany his daughter down the aisle just six days before he died. Wayne Wharton, a 61-year-old father-of-six had terminal cancer but was taken from hospital in Carmarthen to the wedding, 30 miles (48km) away in Haverfordwest, Pembrokeshire. He was accompanied by volunteer paramedics, who stayed by his side the whole day, even sitting to eat with guests, before returning Mr. Wharton to hospital. ... "The paramedic pushed dad down the aisle and I held his hand," said bride Jess Lewis, who married her partner Matthew ... "Obviously people cry at weddings because of the emotion, but every single member of the family was there and for a lot of them it was their last time to see him. It was a wedding but also a goodbye."

Resources are expanding for older adults on their own California Healthline; by Judith Graham; 12/9/24 Jeff Kromrey, 69, will sit down with his daughter the next time she visits and show her how to access his online accounts if he has an unexpected health crisis. Gayle Williams-Brett, 69, plans to tackle a project she’s been putting off for months: organizing all her financial information. ... Until a few years ago, few resources were available for this growing slice of the older population. Now, there are several Facebook groups for solo agers, as well as in-person groups springing up around the country, conferences and webinars, a national clearinghouse of resources, and an expanding array of books on the topic. [Click on the title's link to read more.]

Reading aloud to my friend in hospice was my long goodbye to her Thrive; by Patty Dann; 12/6/24 Reading a book aloud or being read to are constant threads in the tenderest moments of my life. When I was a child, my mother sat on my bed and read three books to me every night, so it would have been natural for me to sit on her bed and read to her during her final days. COVID-19 prevented that. Four years later, Batya, a woman in my building — the same age my mother was when she died — was in hospice at home. Each day, I read to her. ... Being with someone as they die is like taking a loved one to the airport. There’s often traffic along the way, and you never know how long it will take, but you do get the privilege of saying a final goodbye. Not being with my mother in her end days left an ache in my heart, but reading aloud to Batya helped me pass on a gift, something I was prevented from doing before.

Holiday joy for children in hospice: Inside the North Pole ‘Fantasy Flight' at Dulles NBC Washington News4; by Joseph Olmo; 12/7/24 Early on Saturday morning, the crowd of almost 100 kids was buzzing with excitement as they waited to board their "North Pole"-bound flight out of Dulles International Airport. Some of the kids wore masks. Others were in wheelchairs, walked with crutches, or had lost their hair. Many are patients with Alexandria nonprofit Children's Hospice International (CHI) -- and all, though they may not know it, were celebrating what could be their last holiday with their families. It's a sobering fact that seems at odds with the joy and enthusiasm aboard the Boeing 777 airplane. But as United Airlines said in the press release, that's exactly the point of the flight. "Come join us as we fly some magic into the lives of children who need it most this holiday season," United said. And magic was provided. Flight attendants and pilots took their job very seriously as they guided passengers to their seats for the flight to NTP: North Pole International, of course. "Did we already write our letters to Santa?" asked one flight attendant, as she walked a family through the tinsel-decorated tunnel to the plane. "Yes," a tiny voice replied. The flight, begun at Dulles 34 years ago in 1990, is an annual event for children battling life-threatening illnesses, and their families. [Click on the title's link to continue reading this story.]

Dallas’ Analog Informatics emerges from stealth to modernize patient engagement in over 150 languages Dallas Innovates, Dallas, TX; by Lance Murray; 12/4/24 AIC aims to "bridge the communication gap" between healthcare providers and patients worldwide by leveraging secure AI and modern communication tools. CEO Philip Lieberman created the platform based on his experiences in caring for his hospitalized mother-in-law during the COVID pandemic. ... Shocked that he knew “more about his Amazon packages” than the state of his loved one, Lieberman vowed to use the experience and resources he’d gained from the previous multinational companies he created “to bring compassionate yet automated continuous communication to every patient and their families.” ... AIC aims to "bridge the communication gap" between healthcare providers and patients worldwide by leveraging secure AI and modern communication tools.  ... AIC said its platform “bridges the communication gap” between healthcare providers and patients, offering continuous automated logistical support in more than 150 languages. 

Make the most of a nursing home visit U.S. New & World Report; by Claire Wolters; 12/2/24 If you have a loved one in a nursing home, you know how important it is to be there for them – literally and figuratively – to demonstrate care. A visit may seem like an obvious way to show support, but don’t underestimate the value it can have for your loved one. ... It may also help them fight off feelings of loneliness that can arise in nursing home environments. Dr. Brian D. Madden, a primary care physician and medical director of palliative care at Providence Saint John’s Health Center in Santa Monica, California, says he all too often sees patients waiting around in nursing homes with “nobody coming to visit.” Here’s how you can make the most of your nursing home visit. ... [Click on the title's link for descrptions.]

Softly into the night - An end of life love story Billings Gazette, Billings, MT; by Joseph Scheller; 11/29/24 This is a picture story about life — of joys and sadness, of challenges and struggles and sacrifice. It’s a story about dementia and caregiving. It’s a story about souls and spirit and deepening devotion. Mostly, though, this is a love story. It begins with Wayne Roberts, a big and burley guy with a Harley but as personable and approachable as they come. ... It was simple, really. When he wasn’t at work, he was caring for his wife, Lynne, who had onsets of dementia. When he was at work, he was thinking of her. I wasn’t looking for a story about caregiving but there was a warmth and openness about Wayne and Lynne that tugged me to tell one through my camera. ... [With] their comfort and trust, I became part of their world, in a way, and was able to photograph most anything. They were mostly simple scenes of daily living and caring, some sensitive, some not, and as dementia stole more and more of Lynne’s mind, her world got smaller and Wayne was her only gateway to it. He paved it with tenderness. ... [Click on the title's link to see photos and read this inspirational story.] 

Nurse diagnosed with blood cancer fulfills dying wish to see new ‘Wicked’ movie Fox 13 Tampa Bay, FL: by Jennifer Kveglis; 11/26/24 A Tampa Bay area nurse who was diagnosed with blood cancer had one dying wish – to see the new movie "Wicked" in theaters. With the help of friends and family, that wish was fulfilled on Monday. Misty Steffen is a wife and mother, and she was also HCA Florida South Shore's chief of nursing. "I've loved every day of my life being a nurse," she said. "Twenty-six years that I got to be one and serve and love and decrease anxiety and increase trust and explain." ... [Description of her serious illness trajectory ...] "It's not what I thought would be the end of my story, but I'm at peace knowing whether I live or whether I die," she said. Steffen said she, her daughter and her husband always sang songs from "Wicked" in the car. Together, they've seen the musical on Broadway twice. Her last wish was to see the new movie in theaters. "The next thing I know he's [her husband] rented out the whole room in the theater," she said. HCA Florida Brandon paramedics, where Steffen worked too, as the assistant chief of nursing, transported her in their ambulance at no charge. "He's like we've got people who are going to come take you in an ambulance to ‘Wicked,’" she said. "I just started balling and I go...'what? Why am I so deserving of that?'" Steffen will spend the coming days surrounded by loved ones, many of whom flew in from all over the country. Editor's note: While this story appears to be focused on the movie "Wicked," it's more about relationships, meaning-making, quality of life, and ... her husband rented out the "whole room in the theater"! If you--like I--enjoy this movie weekend, Misty Steffen's story gives a new meaning to giving thanks, creating new memories from old for now and ahead. From Part 2 of Wicked, "... because I knew you, I have been changed for good."

Early hospice care has transformative impact McKnights Senior Living; guest column by Aaron Housh, CEO of Good Samaritan Hospice in Roanoke and Christiansburg, VA; 11/25/24 Hospice care is more than a medical service — it’s a lifeline of compassion, connection and support during one of life’s most vulnerable moments. For more than 20 years, I’ve witnessed the profound impact hospice can have, not just on residents and patients but on the families who love and care for them. But this impact is magnified when hospice care is introduced early. ... One of the greatest gifts hospice provides is time — time to prepare, time to connect and time to say goodbye. A friend once shared how hospice changed her family’s experience with her mother’s death. The nurse spent time explaining what to expect, answering questions and normalizing the changes they were seeing. That preparation eliminated panic, allowing the family to focus on being present. Her mother passed with dignity, surrounded by love and understanding. This story illustrates what I’ve seen time and again: families who enter hospice early have the opportunity to build trust with their care team, process emotions and fully use the services available to them. Those families are better equipped to navigate the physical and emotional challenges of end-of-life care, creating space for meaningful moments and lasting memories.

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.” 

How to start the most difficult conversation in the world this holiday season EIN Presswire, Philadelphia, PA; by Cremstar; 11/25/24 According to a Caring.com Survey only 32% of Americans have a will. This Thanksgiving take advantage of this year’s holiday gatherings to plan for the inevitable. ... “There isn’t one right way to approach this topic. It really depends on the person you’re talking with,” says J.G. Sandom, CEO of Cremstar, a leading online cremation service. For example, if you know your person doesn’t like to be taken by surprise, give them a heads up, says Kate DeBartolo of the Conversation Project, an initiative of the Institute for Healthcare Improvement. Planning a visit with your parent(s)? Let them know beforehand that this topic is on your mind and that you’d like to talk about it with them. This gives them the opportunity to think about what they want, if they haven’t already. Here are Four Tips to ensure a successful dialogue:

Elizabeth Nemacheck: The personal consequences of EPH's discontinuation of in-home hospice Estes Park Trail-Gazette, Estes Park, CO; by Elizabeth Nemacheck; updated 11/22/24 I am writing regarding Estes Park Health's decision to eliminate in-home hospice and home health care in Estes Park. Hospice helps the family by dismantling hospice, Estes Park Health has off-loaded the end-of-life burden solely on the family, during one of the most difficult and totally predictable life events. I hope to illustrate three key issues we identified by sharing my story. My father died at home in September of 2024. After his terminal cancer diagnosis midsummer, my family discussed my dad's wishes in consultation with his oncologist and primary care doctor. Like so many of us, my dad decided that he would very much like to die at home, so that became our goal. We sought alternatives to hospice support beyond Estes Park Health's discontinued home hospice care; once we confirmed that the only hospice available in Estes was in-hospital hospice, we built the infrastructure ourselves to be able to keep my dad at home. Thankfully we had the financial resources to do so, and a lot of gumption. While we were able to keep him at home, we identified three key issues: