Literature Review

My dad had an Advance Directive. He still had to fight to die Newsweek - My Turn; by Maggie Schneider Huston; 8/26/24, published in our newsletter 8/27/24My mom died peacefully. My dad died 72 days later, angry at the doctors for ignoring his wishes. ... Dad had heart surgery on December 20, 2023. An hour after the surgery ended, his vital systems started shutting down. A cascade of interventions, one after another, kept him alive. Four days later, he said: "Put me on hospice." The doctor dismissed this request, rolling his eyes and saying: "Everyone on a ventilator says that." On Christmas Day, my father asked for hospice again. He was in pain. He knew his recovery would be long and ultimately futile. He would never have an acceptable quality of life again. ... Dad's care team insisted palliative care was the same as hospice care, but he knew the difference. He wanted hospice care. Finally, they reluctantly agreed and called for a social worker to make arrangements. It wasn't necessary. Once they removed his treatment and relieved his pain, he died five hours later. ... Editor's Note: This article is not about Medical Aid in Dying (MAiD). It is about honoring Advance Directives, person-centered care with communications and actions related to "palliative" vs. "hospice" care. Pair this with other posts in our newsletter today, namely "Improving post-hospital care of older cancer patients."

His sick wife asked him to kill her. Now that she's gone, he says the loneliness is worse. USA Today; by Madeline Mitchell; 6/11/25 Ever since his wife died in December, David Cook feels like a stranger in his own home. ... The loneliness “is a problem,” Cook said, and sometimes he slips into dark, depressive episodes he can only shake with sleep. He avoids the living room, with the framed photos of the two of them smiling together, the new plush carpet, the television where they'd watch tennis and golf and the ghost of the recliner she used to sit in. Patricia Cook died there, so for now − maybe forever − it's off limits. ... When she went into hospice in their living room, adamant that she’d die in her own home, the pain was excruciating. “She actually, several times, asked me to kill her," Cook said. "And I didn’t even have to think about it, I just said, ‘I’m sorry.’ I said, 'I just can’t do that.’” “Do you know how hard that is?” Cook said. “When someone asks you to kill them?” ... Editor's note: Spoiler alert. David Cook did not kill his wife. Still, he asks, "What more could I have done?" Read this story to develop your understanding of the profound depths of loss for spouses/partners, especially when they have served as caregiver through challenging needs.

A World War II hero is facing his final battle - with Medicare | PennLive letters PennLive Patriot News; by PenLive Letters to the Editor; 6/5/25 “Is this how one treats a 100-year-old World War II Army veteran?” I am such, having defended my country in the Philippines and then as one of the first GIs to step on Japan’s shores when it surrendered. Today, I am a widower, living alone under hospice care in the same small, comfortable home my wife and I cherished for so many years. My health condition has deteriorated dramatically, due to the ravages of ESRD, bladder cancer, anemia, high blood pressure, depression, and loss of balance. I am mostly bedridden, waiting for the inevitable. And yet, just now, I have received a Notice of Discharge from hospice because of an “extended prognosis,” literally meaning in lay terms that, “I’m living too long for hospice and Medicare purposes.” They argue that I’m now able enough medically to make it on my own without hospice care! ... I know I have only weeks, perhaps a month to live, but their rejoinder is simply, “Thank you for your service, but get out of our sight.”Editor's note: Click here for a similar related article and my editor's note, Dementia patient discharged from hospice over Medicare requirement. Here’s why it happened. (One of our "most read" Sunday posts.) These cases are too common. Basic communication, information, and coordinated care planning can mitigate much of the distress and pain. How does this dynamic play out with the patients and families you serve?

40 years after Karen Ann Quinlan’s death, NJ right-to-die case still stirs strong emotions New Jersy Herald; by William Westhoven; 6/4/25 ... Today, Americans are free to declare those rights [about dying] in the form of advance directives such as a living will. For that, we have one New Jersey family to thank: the parents and siblings of Karen Ann Quinlan, whose faith carried them through the arduous process of turning their tragedy into a legal victory that changed the way Americans approach the end of life. They were aided by a collection of attorneys and judges on both sides of the life-or-death case who chose to work "as adversaries but not enemies." Karen, then 21, fell into an irreversible coma after attending a party in Sussex County on April 15, 1975. She died 40 years ago, on June 11, 1985, in a Morris County nursing home.Editor's note: I remember this. Do you? In the midst of today's MAiD legislation, lobbying, and often highly inflammatory stances, I'm struck by this article's description, "They were aided by a collection of attorneys and judges on both sides of the life-or-death case who chose to work "as adversaries but not enemies." Yes, strong emotions and beliefs still drive both sides. Yes, we still choose how to work together. 

17 "Spooky" things that happened right before terminally-ill patients passed away, according to nurses who saw it first-hand BuzzFeed Staff; by Raven Ishak; 5/31/25 "At the beginning of my shift, my patient kept pointing to a corner of the room and said to me, 'Do you see them?" ... When medical professionals work closely with patients who may pass soon, a lot of "supernatural" things may occur. So we thought to ask the BuzzFeed Community, "Nurses with dying patients, share with us the most unexplainable things you've ever witnessed." Here's what they said below: ...

Hospitalists should champion hospice as ‘life with dignity’ Medscape; by Julie Peck; 5/29/25 If anyone can put a positive spin on the end of life, it’s Charles Vialotti, MD, director of Hospice Care at Holy Name Medical Center’s Villa Marie Claire in Bergen County, New Jersey. Violotti, who at the age of 80 lives at the 20-bed Villa Marie Claire to serve its residents full-time, says the hospice industry needs hospitalists’ help with sort of a rebrand, one that will almost certainly have a positive effect on patient and family satisfaction. “Providers used to stress offering people death with dignity. And if you think about that, who is ever going to choose anything that offers death? Death in any form is still death,” Vialotti said. “So, we really like to focus on offering people life with dignity, giving people back choice, giving them the option to structure their final days, weeks, or months the way they would most like to see it happen."

IU Health gets $20M gift for clinical innovation institute  Becker's Hospital Review; by Madeline Ashley; 5/20/25 Indianapolis-based Indiana University Health has received a $20 million donation from Sarah and John Lechleiter and Deborah and Randall Tobias to create the Tobias-Lechleiter Institute for Clinical Innovation. IU Health will match the donation, bringing the investment in the institute to $40 million, according to a May 20 news release shared with Becker’s. ... The institute plans to recruit 75,000 residents yearly in advanced medical studies; enroll 300,000 patients in the Indiana Biobank initiative over five years to aid research into genomic risk factors pertaining to Indiana’s population; attract and retain top fellows, students and faculty; enhance research resources; and increase the impact and pace of statewide medical research.

When patients die: A myeloma specialist grieves Medscape; by Manni Mohyuddin, MD; 5/28/25 ... We form such beautiful bonds with patients as we guide them through the highs and lows of treatment. And that is why I struggled so profoundly with the abrupt separation created by a transition of a patient to hospice. How can it be okay for me to be seeing a patient weekly (and sometimes more often) for such a long time and then suddenly never see them again after they transition to hospice? How can we just disappear from their lives at such a critical juncture? I understand that I may not have more chemotherapy to offer, but I at least can offer emotional support, validation, and my friendship. ...Editor's note: Continue reading this powerful commentary. Taking this further, do you have HIPAA compliant systems in place to notify the patient's oncologist or pre-hospice primary physician of the death? 

"You're next": People are sharing the last words they heard someone say as they were dying, and they're not all inspiring BuzzFeed; by Mike Spohr; 5/21/25There's so much we don't understand about the end of life. Recently, we shared a post where Quora users shared their experiences being present for the final moments of someone's life...and hearing their last words. Well, as it turns out, BuzzFeed's readers wanted to share their experiences hearing someone's last words too, so we rounded them up here:

[Taiwan] Spiritual well-being of terminally ill patients and next-of-kin caregivers in hospice care: A quantitative and qualitative approachPalliative and Supportive Care; Er-Jung Hsueh, Shu-Chun Tsai, Jun-Hung Lai, Chi-Yu Lu, Tsai-Wei Huang, Made Satya Nugraha Gautama; 4/25Terminal cancer patients often endure significant distress, impacting their quality of life. Spiritual well-being provides peace and meaning during this challenging period. This mixed-methods study included 30 terminally ill patients and 17 next-of-kin caregivers in hospice care. Spiritual well-being was assessed using the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale (FACIT-Sp-12), and symptom distress with the Edmonton Symptom Assessment Scale. Patients showed a significant improvement in spiritual well-being over time, ... [and] symptoms such as shortness of breath ... , drowsiness ... , and anxiety ... were negatively associated with spiritual well-being. Caregiver spiritual well-being positively influenced patient scores, especially with female caregivers ... Qualitative findings supported these results, revealing themes of spiritual adjustment, the impact of physical symptoms on spiritual well-being, and the crucial role of caregivers in providing emotional and spiritual support.

First FDA-cleared Alzheimer's blood test could make diagnoses faster, more accurate NPR; by Jon Hamilton; 5/21/25 A new blood test that detects a hallmark of Alzheimer's is poised to change the way doctors diagnose and treat the disease. The test, the first of its kind to be cleared by the Food and Drug Administration, is for people 55 and older who already have memory problems or other signs and symptoms of Alzheimer's. The results show whether the brain of a person with cognitive symptoms also has amyloid plaques, clumps of toxic proteins that build up in the spaces between brain cells. The presence of plaques in a person with cognitive symptoms usually confirms an Alzheimer's diagnosis.Editor's note: Game-changer!

‘Marathon’ effort to refine end-of-life wound coding runs on McKnights Long-Term Care News; by Kimberly Marselas; 5/28/25 Two key wound care groups are finalizing a proposal for new codes that would help skilled nursing providers avoid newly created diagnoses gaps for end-of-life skin breakdown that could lead to missed reimbursement and potential liability risks. The push comes a year and a half after nursing homes won the right to stop coding wounds that occur as part of dying as pressure injuries, which can hurt their quality ratings. But they also lost any way to code or acknowledge treatment of such skin failure in the Minimum Data Set. ...