Literature Review

Challenges in effective communication for end-of-life decision making in clinical practiceHospital Practice; by Anish Bhardwaj; 7/25Decisions on end-of-life (EOL) care are a complex process that involves multiple stakeholders including patients, their families, and healthcare providers. Myriad factors play a role in making these decisions, such as desires of the patient and surrogates, advance directives, the patient's health condition, expectations about the disease course and prognosis, metaphysical beliefs about life and death, spiritual and socio-cultural backgrounds and views, quality of life considerations, legal connotations, costs of care, and nuances surrounding organ donation and procurement. This treatise utilizes three real-life examples to highlight the complexity and debate surrounding these decisions, especially in terms of interface of medicine and legal process, especially when a patient is in coma or a vegetative state and decisions transfer to surrogates. 

Why terminal cancer patients still receive aggressive treatment MedPageToday; by M. Bennet Broner; 7/31/25 Recently, researchers examined whether there had been any changes in the way terminal cancer patients died from 2014 to 2019, given the increased information available on hospice, palliative care, and advanced end-of-life planning (EOLP). They asked whether those who were terminal continued aggressive treatment until their demise. The authors anticipated a decrease in this, but found that the frequency of cancer patients who continued aggressive therapy had not declined. The study did not examine decision-making. Still, the researchers, based on other studies, theorized that the lack of change resulted from a confluence of physician and patient factors. ... [Physicians] might predict a more optimistic prognosis than justified, avoid discussing EOLP, support (over)intensive treatment, and/or overemphasize treatment effectiveness while minimizing its side effects. Oftentimes, given their statements, physicians will offer treatments they know to be of little value, believing that patients expect them to propose something rather than admit there was nothing realistic left to offer.Editor's Note: Pair this with our recent post, Doctors’ own end-of-life choices defy common medical practice.

System wide goals of care implementation: A podcast with Ira Byock, Chris Dale, and Matt GonzalesGeriPal podcast; by Eric Widera, Alex Smith, Ira Byock, Chris Dale, Matt Gonzales; 7/24/25Most health care providers understand the importance of goals-of-care conversations in aligning treatment plans with patients’ goals, especially for those with serious medical problems. And yet, these discussions often either don’t happen or at least don’t get documented. How can we do better? In today’s podcast, we sit down with Ira Byock, Chris Dale, and Matthew Gonzales to discuss a multi-year healthcare system-wide goals of care implementation project within the Providence Health Care System. Spanning 51 hospitals, this initiative [found] an increase from 7% to 85% in goals of care conversation documentation for patients who were in an ICU for 5 or more days. How did they achieve this? Our guests will share insights into the project’s inception and the strategies that drove its success, including:

[Korea] Earlier palliative cancer care cuts end-of-life ED visits Medscape; ed. by Gargi Mukherjee; 7/23/25 A recent retrospective study found that earlier outpatient palliative care referrals for patients with advanced cancer were associated with a small increase in overall emergency department (ED) visits but significantly fewer end-of-life ED visits and improved advance care planning. ... A substantial proportion of patients with advanced cancer visited the ED, including during the final month of life. Earlier palliative care referrals were associated with fewer end-of-life ED visits, “emphasizing the importance of timely integration of [palliative care] to reduce unnecessary interventions and ensure goal-concordant care,” the authors wrote. The researchers also noted that the findings underscore the need for structured advance care planning discussions across care settings to enhance the quality of end-of-life care.

Changing funeral preferences: NFDA’s first-of-its-kind generational report now available National Funeral Directors Association (NFDA), Brookfield, WI; Press Release; 4/2/25 The National Funeral Directors Association (NFDA), the world’s leading and largest funeral service association, has released an unprecedented study examining consumer attitudes toward funeral service across generations. Available to funeral service professionals for download at no charge, Changing Consumer Preferences: A Generational Perspective on Attitudes Toward Funeral Service provides critical insights to help funeral service professionals adapt to evolving expectations and continue delivering meaningful memorial experiences. ... Key findings include:

Effectiveness of an educational intervention in enhancing end-of-life care understanding and decision-making in African AmericansPalliative & Supportive Care; Delicia Pruitt, Megan Reilly, Stephen Zyzanski, Neli Ragina; 7/25AA [African American] patients are more likely than other ethnic groups to choose life-sustaining measures at the end of their lives, leading to patients not receiving care to help them die peacefully. This decision is partly based on lack of knowledge of the available EOL [end of life] care options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that physicians can answer questions at the end of the session and empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.

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 …

Facilitating advance care planning conversations among patients with cancer and their care partners utilizing a conversation game: A pilot studyCancer Reports; Kylee Kimbel, Michael Hayes, Morgan Bucher, William A Calo, Tullika Garg, Monika Joshi, Hannah Kuntz, Terrence E Murphy, Erika VanDyke, Emily Wasserman, Lauren J Van Scoy; 6/25Current guidelines [for patients with cancer] recommend early, frequent advance care planning (ACP) conversations among clinicians, patients, and care partners (CPs) and advance directive (AD) completion. However, only 55% of patients with cancer have completed such directives, suggesting the need for interventions to increase rates of ACP. The Hello game has been shown to be effective in promoting ACP in several populations but has not been tested in patients with cancer or their CP. Three themes emerged from both patient and CP focus groups ...: (1) Participants enjoyed the group dynamics and relating to peers when playing Hello; (2) Hello serves as a helpful conversation starter; (3) modifications could help tailor Hello for use in cancer context-particularly adding more questions about quality of life and mental health. Hello was well-received by dyads, and their feedback was used to tailor Hello for patients with cancer and their CPs.

Study: New method successfully measures whether seriously ill patients receive care matching their wishesMcKnight's Long-Term Care News; by Donna Shryer; 7/8/25A study has developed a reliable way to measure whether seriously ill hospitalized patients receive medical care that aligns with their personal goals. The research, involving 109 seriously ill patients with a median age of 70, found that using electronic clinical notes to measure goal-concordant care is feasible. The study identified variation in whether treatment matched patients’ stated goals. Researchers found that only half of all treatment phases were goal-concordant — with medical treatment matching patients’ documented preferences. Nearly one in five phases was goal-discordant, where treatment contradicted stated wishes, while roughly one-third remained uncertain due to unclear or missing goal discussions.

Can a chatbot be a medical surrogate? The use of large language models in medical ethics decision-makingNEJM-AI; Isha Harshe, B.S., B.A.; Kenneth W. Goodman, Ph.D.; Gauri Agarwal, M.D.; 6/25 The use of AI in health care has raised numerous ethical challenges. Issues concerning data privacy, accountability, bias perpetuation, and the identification of appropriate uses and users have prompted scholars and scientists to tackle these challenges. Our findings indicate that while AI systems may assist in identifying considerations and guidelines for ethical decision-making, they do not consistently demonstrate the flexibility of thought that humans exhibit when addressing novel ethical cases. AI can support ethical decision-making, but it is not currently capable of showing autonomous ethical reasoning for consultation regarding patient care.

American Geriatrics Society position statement: Making medical treatment decisions for unrepresented older adultsJournal of the American Geriatric Society; Joseph D Dixon, Aruna V Josyula, Noelle Marie Javier, Yael Zweig, Mriganka Singh, Luke Kim, Niranjan Thothala, Timothy W Farrell; 5/25This paper is an official position statement of the American Geriatrics Society (AGS) and updates the 2017 AGS position statement, Making Medical Treatment Decisions for Unbefriended Older Adults. In this updated position statement, the term "unbefriended" is replaced by "unrepresented" as a term that is more value-neutral, more accurately describes the circumstance in which a person without medical decision-making capacity does not have recognized surrogate representation, and better aligns with increasingly preferred terminology as reflected in recent medical literature. We define unrepresented older adults as those who (1) lack decisional capacity to provide informed consent for a particular medical treatment, (2) have not executed an advance directive that addresses the medical treatment at hand and lack capacity to do so, and (3) lack representation from a surrogate decision-maker (i.e., family, friend, or legally authorized surrogate).  The process of arriving at treatment decisions for this population should follow standards of procedural fairness and include capacity assessment, search for potential surrogates, team-based efforts to determine the patient's values and preferences, and steps to guard against bias. Proactive measures are needed to identify older adults at risk for becoming unrepresented. This position statement also calls for national efforts to reduce state-to-state variability in legal approaches for unrepresented patients.

Grandad rehearsed his funeral 10 years ago – Now his final wishes come true after his passing Good News Network; 7/28/24; published in our newsletter 8/1/24A British senior who pre-planned his funeral and rehearsed it on TV in 2013, had his final wishes come true after peacefully passing away in June. Malcolm Brocklehurst, who is a renowned aircraft expert, commissioned an orange airplane-shaped coffin ten years ago from Crazy Coffins, an offshoot of a Nottingham-based traditional coffin and urn maker in England that helps people customize their funeral. The grandfather-of-nine was filmed sitting in the coffin on Channel 5’s Bizarre Burials, which also featured a rehearsal of the ceremony that the former aerospace engineer coordinated to the last detail. The plane was aptly called Tango One and numbered with MB 1934—his initials and year of his birth. He also announced that he wanted the funeral procession to leave from the stadium pitch where his favorite football team, Blackpool FC, plays. ... But speaking about the rehearsal in 2013, he said it was all “light-hearted fun.”