Literature Review

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.

The Aging Revolution: Growing old in America becoming more dignified, but with senior population booming, is nation’s health system prepared?BusinesssWire; 6/4/24A half-century after renowned gerontologist, psychiatrist and author Dr. Robert Butler ridiculed the nation’s medical establishment for ignoring the suffering of older Americans, Northwell Health today announced the publication of The Aging Revolution: The History of Geriatric Health Care and What Really Matters to Older Adults, which chronicles the significant advancements made in improving the physical and emotional health of the nation’s rapidly aging population. 

Manatee County hospice volunteer celebrates patients' birthdays dressed in costumes Specturm News 9, Manatee County, FL; by Rick Elmhorst; 5/13/24 A Manatee County woman is bringing joy to people in hospice care by celebrating their birthdays. Pam Freas volunteers with Chapters Health Lifepath Hospice by dressing in costumes and visiting patients for their birthdays. She also helps manage the supplies for milestone birthday celebrations, including packing birthday bags full of blankets and pillows. Freas recently visited a young boy named Jackson who was in home hospice care. She dressed as a dinosaur since Jackson loves dinosaurs. Although Jackson has a difficult time communicating, Freas spent time talking with him to brighten his day.

At age 99, Jimmy Carter is still exercising his right to vote Story by CNN and Atlanta News First; 5/10/24 Former President Jimmy Carter, age 99, is still exercising his right to vote. Carter’s grandson, Jason Carter, said the nation’s 39th president cast a mail-in ballot this week for the May 21 Georgia primary, emphasizing his grandfather is not going to miss an election. The former president entered hospice care more than a year ago in his hometown of Plains, Georgia. Since then he celebrated his 99th birthday last October and attended the annual Peanut Festival, which celebrates the region’s cash crop. He also mourned the loss of his wife, Rosalynn Carter, who died in November at the age of 96. To date, that has been Jimmy Carter’s last public appearance. 

The power of art in palliative care InSight+, Melbourne, Australia; by Caitlin Wright; 5/6/24 ... Melbourne artist Jeffrey Kelson is known for his thought-provoking portraits, several of which have been exhibited at the Melbourne Holocaust Museum. He believes a portrait is a window into a subject’s heart and mind. However, after being diagnosed with late-stage pancreatic cancer, it wasn’t this style of art that Mr. Kelson was drawn to. As soon as he felt well enough to return to his studio, he started work on a series of colourful collages. “At one point, my wife came into the room and commented on how bright they were and how full of life force. She was surprised that I could create pieces that were so energetic when I felt so ill. I hadn’t really thought about it. I just needed to work,” he told InSight+. ... Palliative care specialist Dr Eric Fairbank was one of Mr Kelson’s art students for several years before Mr. Kelson’s diagnosis. He said Mr Kelson’s approach to his diagnosis has confirmed his belief that the best outcomes of cancer treatment are achieved when they’re complemented by the patient’s own resources of mind, will and spirit. [Click on the title's link to view several of his paintings.]

JAMA Revisited, from May 1924: The Promise of a Longer Lifetime JAMA; 4/18/2024.Originally published May 10, 1924 | JAMA. 1924;82(19):1518-1519.Editor's Note: Yes. This article's original date is May 10, 1924; one hundred years ago, shortly after coming through the Spanish flu pandemic of 1918-1919.Modern hygiene has been described as the reaction against the old fatalistic creed that deaths inevitably occur at a constant rate. The study of vital statistics shows that there is no “iron law of mortality.” ... The New York report states that the increase in the expectation of life has been almost entirely confined to the ages before 35 years. In the future, the health officer must, of necessity, consider steps to be taken to minimize the mortality among those of middle and advanced life. There is much to encourage man today to seek to secure a normal lifetime.

Experts say Shannen Doherty’s approach to cancer ciagnosis can be helpfulToday Headline; 4/16/24Shannen Doherty, the actor best known for her role in “Beverly Hills, 90210,” has stage 4 cancer. She’s getting rid of her material possessions so she can focus on spending time with her mother. On an episode of her podcast, “Let’s Be Clear With Shannen Doherty,” released on April 1, the actor said she wants to sell off some of her stuff so her mother doesn’t have to worry about dealing with it if she dies. ... She also said she hopes to use that money to travel with her mom without dipping into her savings.