Literature Review

The most important thing you need to know about end of life planning Forbes; by Peter Ubel; 1/22/26 ... Many experts say I should document my preferences clearly and unambiguously in my medical records so that, in the case of mental incapacity, my doctors can look at what I say and honor those preferences. According to the AARP, leaving ahead detailed instructions about your end-of-life preferences means “that you remain the captain of your own ship.” ... I respect these experts. And I do not begrudge anyone who has filled out such a document. But I worry that this approach won’t work and could even backfire. That is why I prefer a different approach, which I will describe shortly. But first, I need to explain why these kind of detailed advanced directives could backfire. ...

10 things I learned after 10 years with ovarian cancer Cure; by Kelly Irvin; 1/22/26 My birthday was January 20. ...  I received my stage 4 ovarian cancer diagnosis on Jan. 16, 2016. ... So here I am still alive ten years later on my 68th birthday. ... I feel I’m allowed to share what I wish my younger self had known when I received my diagnosis. Counting down to number one, here are my lessons learned:

Patients' perceptions of autonomy in palliative care: Two patient interview exemplars Palliative Care and Social Practice; by Kristen Tulloch, Julia Acordi Steffen, John P Rosenberg; 1/19/26 Results: Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals' wishes for autonomy.Editor's Note: The authors’ focus on coping with loss of autonomy is essential. As illness progresses, autonomy can erode not only in medical decisions but across daily life, identity, and meaning—losses that are too often overlooked in clinical care. The frequently misapplied “Five Stages of Grief” can further blur this reality, reducing complex, personal experiences to linear expectations not supported by contemporary grief research. Understanding how patients adapt to loss of autonomy is foundational to truly person-centered palliative care.

A different kind of care: The compelling case for palliative care in advanced kidney disease docwirenews; by Keightley Amen; 1/20/26 Advanced kidney disease requires some of the most complex care in medicine due to medical management, comorbid conditions, symptom burden, patient and family psychosocial needs, difficult conversations, and advance care planning. Despite the significant coordination needed, care for this patient population is often more fragmented, with less access to supportive services, than for people with other chronic, life-limiting illnesses.

Trends in pediatric palliative care - A newsletter Trends; by the Siden Research Team; 1/20/26 In 2024 TRENDS published it’s 100th issue and enrolled its 1000th newsletter subscriber, the newsletters growth shows no signs of stopping. The Siden Research Team continues to center ways to foster the pediatric palliative care community and ultimately improve care for our patients. ... ith no journal dedicated to pediatric palliative care, finding relevant articles required scouring pediatric journals for palliative literature and palliative journals for paediatric literature – clearly there was a gap in effective dissemination of relevant articles. ... The Siden Research Team took initiative to bridge this gap. In June 2016 the first search and resulting citation list was compiled.

Racial and ethnic differences in early DNAR orders after in-hospital cardiac arrest Physician's Weekly; by Shanel Diviney-Brown; 1/16/26 In a comprehensive national cohort study published in JAMA Network Open, researchers examined how race and ethnicity relate to the timing of Do Not Attempt Resuscitation (DNAR) orders among adults experiencing in-hospital cardiac arrest. The findings highlight emerging inequities in end-of-life decision patterns that may inform clinical practice and shared decision-making in critical care settings.

New IL law requires annual report on prison hospice care WAND News, Springfield, IL; by Mike Miletich; 1/15/26 A new law requires Illinois to report data on hospice care available for prisoners. Supporters say the law will bring dignity, transparency and compassion to people dying within the state's correctional facilities. More than 1,000 prisoners are 65 or older, and a growing number of those people need end-of-life care and support services. The Illinois Department of Corrections does not have a formal hospice program, as end-of-life care is provided on a prison-by-prison basis. 

The long quiet of Karen Andrews 15 - Utah's Art Magazine, by Shawn Rossiter; 1/14/25 When Alli Harbertson first walked into the Andrews home, it was the paintings that stopped her. “They’re everywhere,” Harbertson recalls. The living room—where Karen Andrews’ hospital bed had been placed—was filled with artwork, paintings covering the walls and leaning against furniture while ceramics, blankets and small sculptures covered coffee tables, bureaus and dressers. ... [After Karen's death,] Ron Andrews did not know what to do with the more than 130 painting, but he knew what his wife had asked of him. “She was so clear,” Harbertson says. “She said, ‘I made my mark. This is the mark I made—my paintings. Don’t let them go to the DI.’” ...

Your middle initial: The weight of a single letter The DO - End-of-life care; by Wendi J. Lovenvirth, DO; 1/13/26 A physician recounts her hospice patient’s final days and the unexpected gravity of completing his death certificate, when one small choice becomes an act of remembrance.

How physical therapy supports comfort and connection in hospice care CBS News Baltimore, Baltimore, MD; by LifeBrdge Health; 1/13/26 ... Physical therapy in hospice looks different from traditional rehabilitation. Instead of focusing on long-term recovery, it centers on day-to-day steadiness and comfort. Every visit is shaped around what the patient feels able to do that day. "I try to emphasize what patients can do versus what they can't," Jennifer says. "Big goals can always be broken into smaller and more manageable steps." Therapy commonly supports three important areas.

End-of-life care behind bars: A periodic literature search - January 2026Personal communication; 1/8/26Thee current issue includes:

Home-based care type II workplace violence nurse provider experience a literature review Home Healthcare Now; by LaDawna Goering DNP, APRN, ANP-BC, BC-ADM, CDP and Tracy Ashby, MLIS; Jan/Feb 2026 Home-based healthcare workers are at risk of violence from patients or visitors, known as Type II workplace violence (WPV). A review of studies from 2014 to 2024 found that WPV in home care is often underreported, and current training programs are not tailored for home settings. This leaves workers vulnerable to physical and psychological harm. The review suggests the need for specialized training for home care providers, focusing on patient screening, situational awareness, and de-escalation techniques. Future efforts should aim to create specific WPV prevention and reporting protocols to enhance safety and accountability in home healthcare.

Dying with dignity - personal perspective: The sacred ending we don’t talk about enough. Psychology Today; by Cynthia Chen-Joea DO, MPH, FAAFP, DABOM; 12/24/25 In the U.S., we spend enormous amounts of energy keeping people alive, curing, fixing, and prolonging life at all costs. What we rarely talk about is how people die. And more importantly, how poorly our system supports them when the end is clearly approaching. ... [Background story about her dad's Parkinson's and eventual death] ... Then came our request for hospice. After an evaluation, we were told he didn’t “qualify” because he had gained some weight and his albumin levels were “too high.” An arbitrary checklist, based on labs values, prevented him from getting into hospice. [Keep reading] So we tried for palliative care instead. I made call after call, only to be bounced between departments, many unclear on the difference between hospice and palliative care, ... Even as a physician, I was stunned by how many barriers we encountered simply trying to do the most humane thing: to advocate for dignity, comfort, and respect at the end of my father’s life.