Literature Review

Wisconsin author discusses her mother’s aging, dying in the American health care system: The long-term care system failed both her and her mother, she writes Wisconsin Public Radio; by Colleen Leahy; 6/27/25At age 99, Judy Karofsky’s mother was kicked out of her Wisconsin hospice facility. Within 48 hours of that decision, Karofsky became her mother’s default nurse. “I had to find a wheelchair for her. I had to keep track of her meds. I had to buy all the bandages and supplies that she would [need],” Karofsky told WPR’s “Wisconsin Today.” Karofsky is the author of “Diselderly Conduct: The Flawed Business of Assisted Living and Hospice.” In it, she chronicles nightmare scenarios as her mother aged and died in the American healthcare system: making her way through independent living, six different assisted living facilities, memory care, skilled nursing and hospice.  

“Her toes fell off into my hand”: 50 moments that changed healthcare workers forever BoredPanda; by Dominyka; 6/18/25 When we go through traumatic events, our brain can shut out feelings and thoughts as a way to protect us from emotional or physical damage. This can make people go numb in stressful situations, so our bodies have time to figure out the best course of survival.  Healthcare workers are frequently exposed to traumatic experiences, so when they were asked what event made them go permanently numb, they shared many devastating stories. Scroll down to find them below, and don’t forget to share similar ones if you have any. 

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."

[New York] State Senate passes Medical Aid in Dying Act, bill heads to governor’s desk  Finger Lakes Daily News; by Lucas Day; 6/10/25 The New York State Senate passed the Medical Aid in Dying Act late Monday night, paving the way for New York to become the 11th state in the nation to legalize medical aid in dying. The vote followed hours of contentious debate and passed largely along party lines, 35-27. Six Democrats broke ranks to oppose the measure. The State Assembly had already approved the legislation in April by a vote of 81-67, meaning the bill now heads to Governor Kathy Hochul, who has the final say on whether it becomes law. 

Sister Grace spent her life helping the homeless. Now in hospice, she reflects on legacy and lessons WXXI News NPR, Rochester, NY; by Gino Fanelli; 6/6/25Sister Grace Miller smiles as she props herself up in her hospice bed and gently teases her strands of chestnut brown hair. “How does my hair look?” she asks. It’s the type of remark one would expect from Miller. Sister Grace is many things: a radical compassionate, a devout follower of the Catholic faith, a civil disruptor, and a wielder of a sharp, slightly sardonic wit. ... The 89-year-old champion for the homeless and destitute is dying, in hospice care at a congregation home on Carter Street. But her spirit is alive and well. “I would fight with them over whatever, whatever the people needed,” Miller said, referring to the county and city administrations she often tangled with over the years. “I would fight for the people. ... She said it was, ultimately, an undying, uncompromising commitment to the work she does as a fierce and fearless advocate for the poor.

Saugus nurse arrested in FBI raid for alleged part in $2.5 million Medicare [hospice] fraud KHTS - Santa Clarita News, Santa Clarita, CA; by Jade Aubuchon; 5/30/25 Jessa Zayas, aka Jessa Contreras, a vocational nurse, is believed to have committed medicare fraud through two different hospice providers, submitting more than $2,500,000 in fraudulent claims to Medicare. Zayas is the Chief Executive Officer of two hospice providers, Healing Hands Hospice Inc. and Humane Love Hospice. From June 2023 through February 2025, she caused Healing Hands and Humane Love to bill Medicare for millions of dollars’ worth of hospice services that were not medically necessary, not authorized by a physician, and were not actually provided to the patients. ...

[Australia] What voluntary assisted dying options are available for those with dementia? ABC News Melbourne, Australia; by Emily JB Smith; 5/24/25 John Griffiths suspects his mind is starting to fail. It is a horrifying prospect for the father-of-three, former Monash University engineering lecturer and CSIRO research scientist. The Melbourne man spends much of his time with his wife Rachel, who lives in residential aged care, reading her poems and short stories. While doctors say he is all clear at the moment, he will be assessed for dementia in the next year. If he does develop the condition, he would rather die than let it take hold. But his options are limited. Although voluntary assisted dying (VAD) will be legal in every Australian jurisdiction except the Northern Territory by the end of this year, it remains entirely off-limits for people with dementia. ...

After multi-year battle, Delaware Medical-Aid-in-Dying bill is law WDEL.com 1150AM and 101.7 FM - Delaware's News Now; by Mark Fowser; 5/20/25, 1:38pm ET  Delaware is now the 12th jurisdiction to allow adults who are terminally ill and want to bring an end to their suffering to request and self-administer medication that would end their lives. Governor Matt Meyer Tuesday signed Delaware's Medical Aid in Dying legislation (House Bill 140) into law, which was passed by the General Assembly earlier this year. The measure also passed last year after a ten-year battle, but was vetoed by then-Governor John Carney. "For those with terminal illness who are seeking out more choices at end of life, the signing of this bill provides those in that circumstance one more option than they had just yesterday," Tim Appleton with The Compassion and Choices Action Network said. The legislation will take effect by January 1st, 2026 - or earlier, pending the implementation of regulations. Under the act, several medical professionals would have to agree that a person's prognosis is terminal with six months or less to live, the adult must be able to make clear decisions, and the person would need to be able to self-administer the medication. Appleton also had a message for people who think this may encourage more people to take their lives: "to assure that not one more person will die as a result of this legislation, but far fewer will suffer."

He was dying, Alabama sent him back to prison anyway AdvanceLocal - AL.com - Alabama Media Group; by Renuka Rayasam; 5/12/25 Brian Rigsby was lying with his right wrist shackled to a hospital bed in Montgomery, Alabama, when he learned he didn’t have long to live. ... Rigsby decided to stop efforts to treat his illness and to decline lifesaving care, a decision he made with his parents. And Rigsby’s mother, Pamela Moser, tried to get her son released to hospice care through Alabama’s medical furlough policy, so that their family could manage his end-of-life care as they saw fit. But there wasn’t enough time for the furlough request to be considered. After learning that Rigsby was on palliative care, the staff at YesCare, a private prison health company that has a $1 billion contract with the Alabama Department of Corrections, told the hospital it would stop paying for his stay and then transferred him back to Staton Correctional Facility in Elmore, according to the hospital record his mom provided to KFF Health News. Moser never saw or spoke to her son again. “The last day I went to see him in the hospital, I was hoping he would take his last breath,” said Moser, a former hospice nurse. “That is how bad I didn’t want him to go to the infirmary” at the prison. A week later, Rigsby died ... in the infirmary, according to his autopsy report. Officials at the corrections department and YesCare did not respond to requests for comment.

It's time to talk about LGBTQ+ elder care Psychology Today - Caregiving; by Stephanie Sarazin, M.P.P.; 5/6/25 A once-hidden story is helping us think about queer kinship and caregiving. Key points:

[France] Deputies approve bill creating Right to Assisted Dying Time.News; 5/3/25 Is the right to die a fundamental human right, or a risky step towards devaluing life? France is grappling with this profound question as a new bill edges closer to legalizing aid in dying. the implications could ripple far beyond French borders, influencing the debate in the United States and around the world. The bill, initially presented by President Emmanuel Macron in March 2024, faced delays due to the dissolution of the National Assembly. Now,revived and championed by Prime Minister François Bayrou,the executive text has been divided into two separate legal proposals. One focuses on enhancing palliative care, while the other addresses aid in dying.

[Netherlands] A care ethical perspective on family caregiver burden and supportNursing Ethics; Maaike Haan, Jelle van Gurp, Marianne Boenink, Gert Olthuis; 3/25Family care-when partners, relatives, or other proxies care for each other in case of illness, disability, or frailty-is increasingly considered an important pillar for the sustainability of care systems. Especially in a palliative care context, however, family care can be challenging. Witnessing caregivers' challenges may prompt compassionate nurses to undertake actions to reduce burden by adjusting tasks or activities. The question is then whether self-sacrifice is a problem that nurses should immediately solve. Therefore, we suggest that caregiver experiences should always be interpreted in an explorative dialogue, focused on what caring means to a particular family caregiver. Nurses do not have to liberate family caregivers from the situation but should support them in whatever overwhelms or drives them in standing-by their loved ones until the end.

Why good palliative care clinicians get fired JAMA Network - Viewpoint; by Abby R. Rosenberg, MD, MS, MA; Elliot Rabinowitz, MD; and Robert M. Arnold; 4/14/25 Even the most seasoned palliative care clinician gets fired. In the past year, one of us was fired after asking whether a patient endorsing suicidal ideation had access to a gun; the patient requested not to see the palliative care team because we asked intrusive questions and documented the encounter. One of us was fired after supporting a family’s decision to discontinue life-sustaining therapies for their loved one with multisystem organ failure; the primary intensivist suggested palliative care overstepped in discussing options for which the family (and clinical teams) was not ready. And one of us was fired after sharing the impression that a patient with cancer was dying; the family suggested they preferred the oncologist’s version of a more hopeful future.