Literature Review

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.]

Central Coast lavender farm helping cancer and hospice patients in Monterey County KSBW-8 News, Monterey County, CA; by Zoe Hunt; 9/9/24  Lavender Creek Co. has turned its family farm into a source of comfort for cancer and hospice patients in Monterey County. Ryan and Myriah Hopkins are the husband-and-wife duo behind the lavender farm on Carmel Valley Road. They’re using their home-grown lavender to donate products like hand towels and eye pillows designed to soothe and relax, a much-needed comfort for hospital patients. ... "We are donating our lavender that [the Monterey Quilters Guild sews]into eye pillows and then donate it to our hospital or nonprofits," Hopkins said. "Then those go to patients undergoing cancer treatment and hospice care."

Hospice patient’s final life wish comes true at Colts game WISHTV.com-8, Indianapolis, IN; by Kyla Russell; 9/8/24 Indianapolis hospice patient Calvin Simmons is terminally ill and had one final life wish: to attend a Colts game. “It was one of those things that you say, ‘I gotta do this, I gotta do this,’” Simmons said Saturday morning. “My dad used to tell a story about me being about three years old, running back and forth in the house wearing a Colts helmet.” The Marine veteran lives at the Abbie Hunt Bryce Home on the northeast side of the city. The home is run by nonprofit Morning Light, Inc. and offers end of life care for free to those in need. The lifelong Colts fan started his day out in his decked out Colts hospice room. Soon enough, his dream came true when he traveled to Lucas Oil Stadium to see the Colts face the Texans for their season opener. 

Flourishing at the end of life Public Discourse - The Journal of the Witherspoon Institute; by Xavier Symons, John Rhee and Tyler VanderWeele; 9/5/24 Dying is part of life, but most people dread their final days. The end of life, which often takes the form of protracted terminal illness, can involve significant pain and suffering as well as functional limits in day-to-day living. Is it still possible for human beings to flourish at the end of life? ... While dying may be a time when agency and quality of life are limited, the end of life also presents unique possibilities for the realization of human goods. Some dying patients discover meaning by reflecting on the events of their lives and come to a deeper appreciation of their own life legacy. Terminal illness also presents opportunities for a deepening of close social relationships and the fulfillment of relationship commitments. Paradoxically, the end of life can be a catalyst for gratitude and self-transcendence. It is worth asking, then: can we flourish even as we approach death? And how can we help our loved ones flourish in their final days? Editor's note: Take your time with this excellent essay, as it gets to our collective, core hospice mission, as described by Dame Cicely Saunders: "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully but also to live until you die." 

World Alzheimer's Month: September 2024 Alzheimer's Disease International, London, UK and Lincolnshire, IL, USA; retrieved from the internet 8/26/24Each September, people unite from all corners of the world to raise awareness and to challenge the stigma that persists around Alzheimer's disease and all types of dementia.  ... The 2024 World Alzheimer's Month will centre around the taglines 'Time to act on dementia, Time to act on Alzheimer's.' ...  Editor's Note: Click here for Alzheimer's Disease Internationals' 2024 campaign theme materials. Click here for the Alzheimer's Association in your USA location.

Project Linus brings comfort to children in need through handmade blankets and quilts Concho Valley, College Station, TX; by Zoria Goodley; 8/21/24 Project Linus, a nonprofit organization dedicated to providing handmade blankets and quilts to children facing serious illness, trauma or other needs, continues its impactful mission across the United States. There are 17 chapters in the state of Texas alone. Patricia Perry, the Brazos Valley Chapter Coordinator, highlights the broad spectrum of needs the organization addresses.

A friend until the end: The impact of hospice volunteers Parkview Health, Fort Wayne, IN; 8/16/24 The presence of a hospice volunteer offers a unique form of support that complements the effots of a care team consisting of physicians, nurses, social workers and chaplains. While these specialists focus on a patient's physical, logistical and spiritual needs, volunteers contribute the element companionship during an emotionally difficult time. Jane Sandor, retired schoolteacher and principal, and Sally Stuckway, former executive director of a medical practice in Lafayette, IN, share how their personal experiences with hospice care shaped their desire to give back.

9 powerful lessons on life you can learn from experts on death Forbes; by Robert Pearl, MD; 8/12/24 As a physician, I have been present at the end of many lives, witnessing the profound agony families face during a loved one’s final moments. While most family members express deep gratitude for the care provided by doctors and nurses, some recount harrowing stories of unnecessary pain their loved ones endured in the final days. These distressing accounts highlight a troubling ambiguity in the care we provide, blurring the line between compassionate treatment and what can feel like unbearable torture. Motivated by my encounters with grieving families, I dedicated the ninth season of the Fixing Healthcare podcast to exploring life’s final chapter and addressing the shortcomings in end-of-life care. ...

When you know you might forget everything: Living with the Alzheimer’s gene Intelligencer; by Amelia Schonbek; 7/16/24 In 2017, 23andMe began offering tests for the genetic risk of developing certain health conditions like celiac disease, Parkinson’s, and late-onset Alzheimer’s. The Alzheimer’s test will tell you if you have the gene variant APOE4, which means you have an increased likelihood of developing the disease. One in four people carry a single copy of the gene, but 2 to 3 percent of the population have two copies — one from each parent — and have a much higher probability. As with all of 23andMe’s upcharged “Health Predisposition Reports,” the sell on it was self-empowerment: Once you know, you can plan, allowing you to take charge of your well-being. 

Palliative care physician: ‘Healing is possible’ even when cure is not Healio, Chicago, IL; by Jennifer Byrne; 6/26/24During her fellowship as a palliative care physician, Sunita Puri, MD, met a patient who taught her that healing is possible even when cure is not. Alice, a 35-year-old woman, had acute myeloid leukemia. ... Nobody wanted to say it out loud, but Alice was dying. “She was only a couple years older than me. She’d lived in San Francisco, a few streets away from where I lived in my residency,” Puri, program director of the hospice and palliative medicine fellowship program at UMass Chan School of Medicine. ... “She had a vibrancy that I had always hoped to embody, but she was intubated, wide awake, on dialysis and starting to suffer from ascending paralysis.” ... During rounds one day, Puri told her attending that she was at a loss about how to help Alice and didn’t feel she was doing anything meaningful for her. “My attending said, ‘What if just being at her bedside is achieving something meaningful?’” Puri recalled. “I’d always understood healing and cure to be different, but this was when I really felt it.” ... “What if healing is choosing to understand that there’s going to be suffering that we can’t alleviate — and sometimes that’s our own — but the most important thing to bring to that is presence?” she said. [Click on the article's title to continue reading.] Editor's Note: Though not directly related to this article, read "Today's Encouragement" at the end of today's newsletter.

Building bridges before loved ones pass - personal perspective: The loss of a loved one Psychology Today; by Sarah Rayner; 6/10/24 ... Last year I lost my mother ...  The only parent I have left is my stepmother. We have had our rows over the years, as she would leap to defend my father so swiftly. Now I appreciate that this was because she loved him deeply and committedly. ... From what I can see, she is going to be with us for a few years. She is an intellectual force of nature and at 88 was granted an honorary doctorate. ... “Wow,” I said, impressed. “You are an inspiration.” She brushed off the compliment. “I’m nothing. You should see my friend, Pam, she is 100! We all have to die sometime," she said. "We have to make way for the next generation." ... t's worth building bridges before loved ones pass. But whether you love or hate your parents, I believe it is often worth building bridges before they pass away, for the sake of both parties. Few people want to look back on the final encounter they had with a loved one regretting all the words left unsaid.

Paramedics helping hospice patients make final memories with family CKXS 99.1 News, St. Wallaceburg, Ontario; 6/7/24A new hospice program in Chatham-Kent is giving patients a chance to take one last end-of-life journey with their loved ones. Chatham-Kent EMS and the Chatham-Kent Hospice have partnered to create the Lasting Memories Program, which allows palliative patients to take a day trip to a location of their choosing. The program helps families create lasting memories of their loved ones in the final days through a trip to the farm, a ride to the lake, or enjoying a sporting event. Local paramedic Jon Benoit was credited for helping to get the program off the ground by coordinating services between the hospice and Medavie Health Services. “Medavie is really good about letting us use their ambulances and helping get this program running and supporting us through it… but the medics doing the actual program, it’s all volunteer time,” he said. Staff at the hospice work with families on coordinating the outing with volunteer paramedics, who escort them throughout the excursion, alleviating any health or medical concerns.