Literature Review

See how 5 families balance care and comfort in pediatric palliative careNational Geographic, by Taylor Sisk, photographs by Lynn Johnson; 2/1/24This medical team chooses to help families of children in palliative care prioritize quality of Life over taxing procedures and treatments. Our photo essay offers a glimpse of how they make the most out of life. ... [Interviews and photos are with the] Division of Palliative Medicine and Supportive Care at UPMC Children’s Hospital of Pittsburgh. ... The goal of this pediatric hospice program is clear: Put family first.Editor's Note: Note this source, National Geographic. Where do these photos and stories "take" you? I am grateful for Hospice of Louisville's (now, Hosparus) first hospice pediatric program in the U.S. I served on our Pediatric Care team for 4 years, and was forever, profoundly changed by knowing these children and their families.

Caregiver charged in deathDouglas Budget, by Matt Adelman; 1/24/24A caregiver has been charged with causing the death of her mother ... earlier this month. Central Wyoming Hospice and Transitions Center was present at her passing and notified Converse County Coroner Ross Gorman, who then notified Converse County Sheriff’s Investigator Ben Peech because the alleged actions leading to her death occurred on the family ranch near Douglas.

A psychologist offers advice on 'being there' for aging parentsForbes, by Mark Travers; 1/22/24As our parents age, we find ourselves on a challenging emotional journey, one that often remains unspoken but deeply felt. It’s the journey of anticipatory grief, a complex mix of emotions and thoughts that arise as we witness our parents becoming older, weaker and more frail. This concept, often overshadowed by post-loss grief, is equally devastating.

The challenges facing male caregiversNext Avenue, by Sophie Okolo; 1/23/24When business owner Mark Horst (not his real name) of Pompton Plains, New Jersey, first found out his wife of 37 years was diagnosed with Alzheimer's, he didn't know what the journey would entail. Of all caregivers in the United States, 16 million, or 40%, are men. Of these men, 63% identified as primary caregivers. 

Talking about death and dyingThe Saturday Evening Post; by N. West Moss; 1/19/24Last summer, my 88-year-old mother was diagnosed with late-stage colon cancer and opted for in-home hospice. She died three months later. Talking about death can be difficult. It can bring up feelings of fear, anxiety, and sorrow. It can also feel awkward as it requires acknowledging one’s own (or a loved one’s) mortality. 

Man with cancer once wanted assisted suicide, but was glad he chose natural death insteadLive Action, by Cassy Fiano-Chesser; 1/15/24“In our last moments, when he was awake, I sat on his bed and sang to him — Joni Mitchell’s Both Sides Now. He had watched her sing it at the Isle of Wight pop festival and it was a magical memory he had relived with us.

Videos help increase communication of care goals for hospitalized older adultsNational Institute on Aging; 1/11/24A video intervention delivered to older hospital patients by palliative care educators helped increase communication and documentation of care preferences. These findings, published in JAMA Network Open, are from a study led by NIA-funded Harvard Medical School and Massachusetts General Hospital researchers.

A looming crisis: Millennials caring for aging parentsFalls Church News-Press, by Brian Reach; 1/11/24... Millennials, born between 1981 and 1996, comprise roughly 73 million Americans. By 2030, all boomers, and over 70 million Americans in total, will be ages 65 and older. This represents an at least 25 percent increase in the number of senior citizens — in just over five years.

How to ensure your passwords don't die with youCyberGuy Report, by Kurt Knutsson; 1/7/24As technology becomes more integrated into our lives, we need to consider how it affects our legacy and our loved ones. There are some uncomfortable but necessary end-of-life conversations we should all have with our loved ones, but passwords usually aren’t one of them. Yet with so much of our professional, personal and financial life online, it is more important now to include how to handle your digital life in those conversations.  

My father, the giant: His life's work was caring for the people he lovedThe Atlantic, by Ross Andersen; 1/3/24Yesterday afternoon, my dad, Erik Dybkaer Andersen, lay sleeping at home in his hospice bed when a calm settled over his body and he drew his last breath. He was 78. For more than a year, we had known that cancer would take him; only the hour was uncertain. But it is still a shock to find him missing from his bedroom, from his family, from the world. It is too early to measure, much less put into writing, all that he meant to us. For now, I want only to read his life into the record, and to get across his essence, above all as a caretaker of those he loved.Editor's Note: Access to the full article requires a free trial or subscription to The Atlantic.

Financial hardship drives unhappiness in people living with dementia, study findsMcKnights Long-Term Care News, by Kristen Fischer; 1/4/24A new study is uncovering just how tough it can be financially to live with dementia. The report, published Dec. 29 in the Journal of the American Geriatrics Society, found that nearly 56% of people with dementia face financial hardships. Those financial challenges are linked with worse reported satisfaction with life and healthcare. ... The study examined data from 534 participants with dementia who shared details on satisfaction with their lives and their healthcare. The researchers compared that data to information from questionnaires from 576 people who were newly diagnosed with cancer and receiving treatment.

A medication mistake cost a Lockport woman her life. A new grant aims to help others avoid same fateThe Buffalo News, by Scott Scanlon; 1/2/24 In a perfect health care system, patients who ended up in the hospital would start to feel better soon and go home with a recovery plan, along with any medications designed to help in that process. ... “All medications have side effects, and some are especially harmful in older adults,” UB officials said in announcing a four-year, $1.95 million grant focused on improving medication prescribing.

Rosalynn Carter’s impact on caregiversBy R. Lynn BarnettBlogKevin MDDecember 25, 2023...  As caregivers, we are the voice for others, but we also need to be a voice for ourselves. ... I wasn’t prepared, as many people aren’t, for the fiscal and physical aspects of caregiving. ... The toll that caregiving can take is often underrated, understated, and under-appreciated. ... Rosalynn Carter was known as a “Steel Magnolia,” showing the same inner fortitude and mettle, combined with grace, of the main characters in the film of the same name. I think all of us caregivers become steel magnolias. It’s not that we deserve a medal for our actions; we just deserve a little peace.[Editor's Note, Joy Berger for Hospice and Palliative Care Today: Rosalynn Carter founded the Institute for Caregiving 35 years ago, preparing for the surge of Baby Boomers' aging and caregiving needs. Her memorable quote lives on: "There are only four kinds of people in the world--those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." Visit www.rosalynncarter.org for more information.