Literature Review

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.]

'I've already had my miracle': 26-year-old Savannah mom enters hospice care with only weeks to live ABC WJCL 22 News, Savannah, GA; by Savannah Younger; 12/4/24 As the holiday season begins, Sara Long, a 26-year-old Savannah woman, is entering hospice care after a prolonged battle with kidney failure. Now the wife and mother is preparing to say her final goodbyes to family and friends. "I wanted to make sure that everything's kind of ready to go for when family visits and all that kind of stuff," Long said. "So, I just want to make things as easy as possible for everybody." Long has been told she has two to three weeks left to live and is now preparing her family for her passing. ... Their daughter, Riley, 4, is too young to understand what is happening, but Long is creating a hope chest so Riley can always remember her. "There are probably dozens, if not hundreds, of letters at this point, to open at different various points in her life. So, like her first day of school all through, or a graduate degree, potentially," Long said. "I feel like I've already had my miracle," Sara said. "I feel like Riley is my miracle. ..."Editor's note: See our "Today's Encouragement" for today, with a beautiful quote from Sara Long, in this article.

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.

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.

Addressing barriers to advance care planning by adults with advanced cancers Regenstrief Institute, Indianapolis, IN; by Shelley Johns, PsyD and Susan Hickman, PhD; 11/25/24 In one of the first studies to test the utility of mindfulness to support advance care planning by adult cancer patients and their family caregivers, researchers from Regenstrief Institute and Indiana University have found that mindfulness showed promise in improving quality of life and advance care planning outcomes in patients and their family caregivers coping with advanced cancer. ... Mindfulness emphasizes paying attention to the present moment with an attitude of openness, compassion and interested curiosity accomplished through meditation and other exercises to manage stress. “Mindfulness is about noticing what’s here so we can choose the wisest response and hopefully be less emotionally reactive,” said Dr. Johns. “Mindfulness practices help individuals increase their mindfulness muscle, so to speak. Anything that we do in our life ... can be done with mindful focus, with mindful attention."

Your children or spouse might not be the best power of attorney — what you can do about it Medical Economics; by Howard Enders; 11/25/24 It’s easy to assume that your spouse or children will be the most suitable candidates for this role, but that isn’t always true. Family members may be emotionally compromised or lack the expertise needed to handle complex medical or financial decisions. So, how can you ensure that your health, finances and legacy are protected? Let’s explore the key elements of estate planning, including setting up the right power of attorney, maximizing savings for future medical expenses and preventing unnecessary financial burdens on your loved ones. ... [Click on the title's link to continue reading.]

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:

Thanksgiving reflections: Gratitude and grieving in hospice care Faith  Hope Hospice & Palliative Care, Pasadena, CA; 11/20/24 Thanksgiving is traditionally a time for joy and gratitude, but it can bring mixed emotions for families with a loved one in hospice care. In the diverse communities of Los Angeles, Beverly Hills, and Hollywood, Faith and Hope Hospice provides compassionate guidance on how to balance grief with gratitude, helping families find moments of peace and connection during this reflective time. ... Gratitude can be a healing force, offering comfort to those grappling with loss. In hospice care, where families confront profound challenges, finding space for gratitude can significantly impact emotional and psychological well-being, fostering resilience and a sense of peace.

'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."

Owatonna MN Hospice Care Program by Freedom Home Care updated and relaunched Freedom Home Care, Owatonna, MN; 11/15/24 Freedom Home Care announced the relaunch of its enhanced Hospice Care Supplement Program, designed to provide support for families and their loved ones receiving hospice care. The program addresses critical gaps by offering additional assistance with daily household tasks, personal care, family respite, overnight caregiving and 24 hour care.  ... The Hospice Care Supplement program is designed to complement the essential medical and emotional care provided by hospice teams, creating a holistic approach that prioritizes both the patient’s and the family’s well-being.

Cancer caregiver anxiety over time: The influence of palliative careJournal of Palliative Care; Laura A Siminoff, PhD; Maureen Wilson-Genderson, PhD; Marcin Chwistek, MD, FAAHPM; Maria D Thomson; 10/24Our analysis detected 3 distinct cancer caregiver groups reporting low, elevated, and very high levels of anxiety. Caregivers with elevated or high anxiety also demonstrated increasing anxiety overtime; however increases were attenuated with patient receipt of palliative care. For cancer caregivers with elevated and high levels of anxiety, palliative care buffers further deterioration of their mental health. Caregivers with the lowest level of anxiety were more likely to be Black, report fewer symptoms of depression or caregiver burden and higher self-rated physical health. Caregivers who were younger reported higher anxiety.