Literature Review

Parental authority and the weight of assent: Navigating moral dilemmas in adolescent end of life careJournal of Bioethical Inquiry; A. L. Heifner, M. M. Ortiz, T. L. Major-Kincade, C. O’Connor; 6/25 In the current era of moral pluralism, medical decisions must account for much more than clinical considerations: they must abide by legal standards of decision-making which usually prioritize parental preferences. Conflict abounds between the parent or other legal decision-maker and healthcare team in situations where the parent prefers not to disclose the severity of the adolescent’s illness or the healthcare team believes continuing lifesaving therapies are not in the adolescent’s best interest. These dilemmas challenge how we solicit adolescents’ preferences (assent) and their options for refusal (dissent). We explore the moral distress healthcare workers face navigating conflict amongst various stakeholders involved in the adolescent’s end-of-life care. Strategies to minimize moral distress are also provided.

Understanding the influence of culture on end-of-life, palliative, and hospice care: A narrative review Cureus; by Veena Hira, Sainamitha R. Palnati, and Saajan Bhakta; 7/15/25 ... This narrative review included 25 relevant publications related to influence of culture and patient demographics on end-of-life care, hospice, and palliative care. As each culture has its own unique views on death and dying, it is crucial to note these cultural differences when assisting with end-of-life care to best align with patients’ beliefs and values. Themes such as cultural barriers, communication preferences and family roles emerged from the publications. ... This narrative review offered a snapshot of how culture influences end-of-life decisions worldwide, specifically in East Asia, South Asia, the Middle East, Europe, and North America, while highlighting themes of 1) truth disclosure and communication preferences, 2) patient autonomy and family involvement, and 3) perception of illness and death. ... Central to providing effective end-of-life care is open, culturally tailored communication that respects patients’ and families’ values, facilitated through shared decision-making discussions. ... Ultimately, integrating cultural understandings of death and dying into end-of-life care planning is not simply a matter of sensitivity, but it is a matter of quality and equity. Health systems must not only provide choices but ensure those choices are intelligible, meaningful, and respectful within the patient’s worldview.Editor's Note: Pair this today's post, My health and my politics walk into a doctor’s office …

Alphabet soup: replacing BMI with BRI The Courier, Findlay, OH; by Aidan Hester and Karen Kier; 7/12/25 ... A recent change in how we measure obesity involves a new acronym. Most medical professionals use body mass index (BMI) to assess weight and obesity. ... BMI considers a patient’s weight and height but does not account for fat distribution. It does not take into consideration a person’s muscle mass or different types of fat throughout the body. ... A recent study published by JAMA Open Network used a patient’s BRI to measure potential mortality. ... Patients in the Q1 group were considered underweight and Q4 and Q5 were evaluated as overweight. Patients in the Q1, Q4, and Q5 groups were found to have an increased risk of death. So, both being underweight and overweight were risk factors for death. Those in Q5 were 50% more likely to pass away, while Q1 and Q4 were 25% more likely when compared to Q2 and Q3.

Hard decisions: Using legal authority over an aging parent Forbes; by Carolyn Rosenblatt; 7/9/25 The phone call came to Dad’s daughter (FD) at 6 AM. Again. This time, it was the night [home] caregiver reporting that her father had fallen while trying to get out of bed. She had jumped up and tried to stop him but she could only get to him in time to break his fall. ... For months, FD had watched her father's condition deteriorate from 300 miles away, visiting as often as she could. Advanced dementia had robbed Dad of his independence, and multiple physical ailments had left him requiring round-the-clock care. He was on hospice care, ... FD [daughter and legal authority] felt compelled to make a decision about moving Dad [from home to a facility]. ...

Mapping the final journey: End-of-life frailty trajectories and cause of deathJournal of the American Geriatrics Society; Jianhong Xu, Jonathan Ka-Long Mak, Qian-Li Xue, Chenkai Wu; 6/25Frailty trajectories at the end of life varied by cause of death, with neurodegenerative disease decedents exhibiting more severe frailty. Among 37,465 decedents, 2,895 (7.7%) died from neurodegenerative diseases [and] three distinct frailty trajectories were identified among these decedents: rapidly progressive frailty (6.9%), moderate progression of frailty (21.1%), and advanced and stable frailty (72.0%). These patterns differed significantly from those observed in decedents with other causes of death, who exhibited persistently low frailty (24.7%), intermediate and progressive frailty (46.5%), and advanced and progressive frailty (28.8%). Compared to cancer decedents, individuals with neurodegenerative diseases had higher baseline frailty and a dominant trajectory of advanced and stable frailty. Older age, lower education, and greater chronic disease burden were associated with the advanced and progressive frailty trajectory.

[UK] Caring for a patient with inoperable hip fractureBMJ Supportive and Palliative Care; Arouba Imtiaz, Amelia Collins, Fiona Rawlinson, Antony Johansen; 6/25Hip fractures pose significant challenges, particularly in managing severe incident pain in people who are not fit for surgery. We present the case of an older man with multiple comorbidities who was managed non-operatively. Standard opioids caused sedation with limited pain relief. Patient-controlled analgesia (PCA) with intravenous fentanyl provided effective, short-acting relief, allowing the patient to remain alert and engage in care. This case highlights PCA as a practical option for managing incident pain in selected palliative patients.

When a fall becomes a death sentence for nursing home residents Justice News Flash; by Harve J.; 7/8/25 For nursing home residents, a trip to the hospital can be far more than a temporary setback it often marks the beginning of the end. According to data reviewed in a national nursing home longevity study by Gruber Law Offices, nearly 30% of older adults die within a month of hospital discharge. These figures suggest that transitions in care, rather than stabilizing vulnerable patients, may be accelerating their decline. ... Each year, nursing homes report between 100 and 200 falls, with the average resident experiencing 2.6 falls. These aren’t isolated accidents they’re indicators of systemic risk. Many residents already face mobility challenges, and understaffing makes close monitoring difficult. The result is a cycle: a fall leads to hospitalization, hospitalization increases frailty, and frailty increases the chance of further injury or death.

How do you value your life? Sandusky Register, Sandusky, OH; by Sue Daugherty; 7/7/25 According to the Pew Research Center, the U.S. has the second-highest number of centenarians, 108,000. Japan has the most, 146,000. As time passes, the projections are that the population of those who are age 100 and older will continue to get larger. If you are an older American who is motivated by the number of years you get to remain on this Earth, this is good news for you. If you are motivated by the quality of your life while you remain on this Earth, then you ought to become more knowledgeable about advanced directives and palliative care.

Avera Medical Minute: Family shares their experience with hospice care Dakota News Now, Sioux Falls, SD; by Dakota News Now staff; 6/30/25 Hospice care is more than just medical support. At the Dougherty Hospice House, it can be considered a home away from home, where staff aim to offer patients and their families the assistance and comfort they need during this difficult time. In this Avera Medical Minute, one Sioux Falls family shares how, thanks to the hospice team, they were able to focus on spending time with their loved one. Craig Lloyd was known as a development leader in the Sioux Falls community, building homes and more throughout the city. “He had a big heart, so he just kept trying to improve things, his thought was always ‘God put me on this Earth to make it better,’” said Craig’s wife, Pat Lloyd. ... Craig was also in Florida at the time when he needed hospice care and Pat credits the work of Avera and the hospice team in making a smooth transition for Craig from there to home in Sioux Falls and then to Dougherty Hospice House.

Students organize death café to discuss the inevitable Fairfield University, Fairfield, CT; by Brad Thomas; 6/27/25 The annual event gathered more than 50 students and faculty from assorted disciplines for meaningful conversations about death and dying. ... [Student Jillian O'Brien '25] helped organize the second annual Death Café during her final semester at Fairfield. She and her classmates in “End-of-Life Communication,” an interdisciplinary course taught by Michael Pagano, PhD, wished to build on the success of last year’s event by continuing to create a space for meaningful conversation about death and dying. At the event, they led thoughtful table discussions about how their perspectives and ways of communicating about death have evolved.

Local hospice volunteer shares story of helping families through grief edglentoday.com, Edwardsville / Glen Carbon, IL; by Sydney Sinks; 6/18/25A local BJC volunteer works with people in hospice care so they have a friend in their final days. Kathy Barrow [describes her time with a hospice patient], “To help someone else, that’s what it’s all about, really.” ... “I try to spend an hour [with the patient]. That’s not much out of a week for someone who’s on their way out of this world.” ... Over the past few months, she has helped him write cards for his family members, read to him, watched TV and played games. Her most recent visit was quieter; he didn’t feel up to talking ... . ... When she isn’t volunteering, Barrow spends a lot of time sewing teddy bears and quilts for grieving families. She will use a loved one’s t-shirt as fabric to create the teddy bears for their families. She shared that her mother always spoke about wanting a hug from a lost loved one, and she thinks about her mom as she creates these bears.

Cocota's story: Life lessons in aging, resilience, and end-of-life agency from a Brazilian matriarchJournal of the American Geriatrics Society; Thiago J Avelino-Silva, Niousha Moini; 6/25In Cocota's case, a hip fracture in her 80s did not lead to permanent disability; rather, she reclaimed her daily routines, demonstrating the interplay between physical robustness and unwavering determination. Equally telling was her decision to "stop eating and drinking" near life's end, exemplifying resilience as a final expression of agency. We further explore how her experiences align with deeper forms of well-being, marked by purpose and prosocial behavior, and practical wisdom, including emotional regulation and sound moral judgment. By examining her life journey, clinicians and community partners can better appreciate how resilience spans physical, cognitive, psychosocial, and spiritual domains, ultimately guiding more integrated strategies to support older adults. The lessons learned have direct relevance for clinical interventions, community programs, and public health initiatives aimed at fostering autonomy and meaningful engagement in later life.

[UK] Palliative sedation at the end of life: Practical and ethical considerationsClinical Medicine; Dr Caroline Barry MBBS FRCP LLM FHEA PG Cert; Dr Robert Brodrick MB ChB (Hons) MA MRCP FHEA; Dr Gurpreet Gupta MBBS BSc PG Cert; Dr Imranali Panjwani LLB, PGDip, PG Cert, PhD; 6/25Highlights: The aim of palliative sedation is to relieve refractory suffering with the use of medications to reduce consciousness. Where palliative sedation is being used to treat agitation at the end of life, it is important to exclude and/or address reversible causes prior to starting medication. The drug, dose and route of administration of palliative sedation may vary according to the indication for treatment. Appropriate and proportionate use of palliative sedation does not hasten death. Suffering may have different meanings for people depending on their backgrounds and life experiences.