Literature Review

All posts tagged with “Clinical News | Advance Directives.”



Why terminal cancer patients still receive aggressive treatment

08/01/25 at 03:00 AM

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.

Read More

Doctors’ own end-of-life choices defy common medical practice

07/31/25 at 03:00 AM

Doctors’ own end-of-life choices defy common medical practice Medscape; by Cristina Ferrario; 7/29/25 A new survey revealed that most doctors would decline aggressive treatments, such as cardiopulmonary resuscitation (CPR), ventilation, or tube feeding for themselves if faced with advanced cancer or Alzheimer’s disease, choosing instead symptom relief and, in many cases, assisted dying. ... The researchers conducted a cross-sectional survey of 1157 physicians, including general practitioners, palliative care specialists, and other clinicians from Belgium, Italy, Canada, the US, and Australia. ... Over 90% preferred symptom-relief medication, and more than 95% declined CPR, mechanical ventilation, or tube feeding. Only 0.5% would choose CPR for cancer and 0.2% for Alzheimer’s disease. Around 50%-54% supported euthanasia in both cases.

Read More

System wide goals of care implementation: A podcast with Ira Byock, Chris Dale, and Matt Gonzales

07/30/25 at 03:00 AM

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:

Read More

Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversations

07/26/25 at 03:20 AM

Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversationsAmerican Journal of Hospice and Palliative Medicine; Tamiko Younge, MD, MSHS; Hailey Moore, MS; Jessica D. Thompkins, BSN, RN, CPN; Maureen E. Lyon, PhD; 7/25Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases. We identified 13 goals of care themes: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Conclusions:Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals.

Read More

[Korea] Earlier palliative cancer care cuts end-of-life ED visits

07/25/25 at 03:00 AM

[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.

Read More

Changing funeral preferences: NFDA’s first-of-its-kind generational report now available

07/22/25 at 03:00 AM

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:

Read More

My mother refused treatment for her breast cancer. Her doctors should have respected her choice. Instead they dismissed her--and criticized me.

07/22/25 at 03:00 AM

My mother refused treatment for her breast cancer. Her doctors should have respected her choice. Instead they dismissed her--and criticized me.STAT; by Joy Lisi Rankin; 7/21/25My mother died in January 2007. She told the family that she had breast cancer in 2002. We still don’t know when she knew, or when she had been diagnosed. One thing we did know: She chose not to treat the cancer. In her encounters with health care professionals — doctors, nurses, assistants — during the last years of her life, her choice was met with disbelief and disdain. “Why aren’t you treating your cancer?” “Do you understand what’s going to happen?” “You know you’re going to die, right?” A final thought went unsaid but was clear: “If you’re not going to do what I recommend, I can’t do anything for you.” [Limited access to STAT with three stories per month.]

Read More

Physician Orders for Life-Sustaining Treatment in rural Virginia

07/19/25 at 03:35 AM

Physician Orders for Life-Sustaining Treatment in rural VirginiaSage Open Aging; Pamela B Teaster, E Carlisle Shealy; 6/25Physician Orders for Life-Sustaining Treatment (POLST) arose in 1991 to improve end-of life-care for patients with advanced, chronic, and progressive illnesses whose death is imminent within a year. POLST attempted to address problems inherent in advance directives (e.g., poor completion rates, confusing form language, dismal communication with a surrogate). POLST exists in all U.S. states, although each is unique and uptake is inconsistent, particularly in rural areas. The purpose of this study was to investigate current practices and barriers around POLST in a rural area using an online survey and interviews with practitioners. Findings included the need for consistent funding, clarification of goals, and greater and varied opportunities for staff training.

Read More

Effectiveness of an educational intervention in enhancing end-of-life care understanding and decision-making in African Americans

07/19/25 at 03:30 AM

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.

Read More

Parental authority and the weight of assent: Navigating moral dilemmas in adolescent end of life care

07/19/25 at 03:25 AM

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.

Read More

Understanding the influence of culture on end-of-life, palliative, and hospice care: A narrative review

07/18/25 at 03:00 AM

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 …

Read More

Hard decisions: Using legal authority over an aging parent

07/14/25 at 03:00 AM

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]. ...

Read More

Facilitating advance care planning conversations among patients with cancer and their care partners utilizing a conversation game: A pilot study

07/12/25 at 03:25 AM

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.

Read More

Measuring goal-concordant care using electronic clinical notes

07/12/25 at 03:05 AM

Measuring goal-concordant care using electronic clinical notesJAMA Network; by Catherine L. Auriemma, Anne Song, Lake Walsh, Jason Han, Sophia Yapalater, Alexander Bain, Lindsay Haines, Stefania Scott, Casey Whitman, Stephanie Parks Taylor, Gary E. Weissman, Matthew J. Gonzales, Roshanthi Weerasinghe, Staci J. Wendt, Katherine R. Courtright; 7/3/25In this longitudinal cohort study among 109 patients with serious illness and limited prognoses, clinicians reviewed and classified 398 epochs of care as goal concordant (50%), goal discordant (19%), or of uncertain concordance (32%) with nearly perfect interrater agreement for categorizing the type of care received. These findings suggest that using electronic clinical notes to measure goal-concordant care is feasible, laying the groundwork for future automated text-based classification methods to improve reliability and pragmatism of measuring goal-concordant care for clinical and research use at scale.

Read More

Study: New method successfully measures whether seriously ill patients receive care matching their wishes

07/11/25 at 03:00 AM

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.

Read More

Rewriting the narrative around death: My Death Plan’s mission to redefine legacy

06/24/25 at 03:05 AM

Rewriting the narrative around death: My Death Plan’s mission to redefine legacyUSA Today; by Connie Etemadi; 6/22/25Death is one of the few certainties in life, yet it remains one of the most uncomfortable topics to discuss. The mere mention of it can feel morbid, taboo, or prematurely grim, something to be ignored until it’s looming. Dawn Norman, a seasoned attorney and the founder of My Death Plan, believes death shouldn’t be something to avoid, fear, or delay thinking about. It must be thoughtfully embraced as a natural part of life that deserves just as much attention as any other form of life planning.

Read More

Can a chatbot be a medical surrogate? The use of large language models in medical ethics decision-making

06/21/25 at 03:20 AM

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.

Read More

Death, taxes, and talking to your parents: Why the conversation you’re avoiding might save your family

06/16/25 at 03:00 AM

Death, Taxes, and Talking to Your Parents: Why the conversation you’re avoiding might save your familyPsychology Today; by Nancy J. Kislin, LCSW, MFT; 6/11/25Key points:

Read More

American Geriatrics Society position statement: Making medical treatment decisions for unrepresented older adults

06/14/25 at 03:00 AM

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.

Read More

My dad had an Advance Directive. He still had to fight to die

06/13/25 at 03:00 AM

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."

Read More

Grandad rehearsed his funeral 10 years ago – Now his final wishes come true after his passing

06/13/25 at 03:00 AM

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.” 

Read More

Shameless star Justin Chatwin had a pivotal Law & Order role in a heartbreaking episode

06/13/25 at 03:00 AM

Shameless star Justin Chatwin had a pivotal Law & Order role in a heartbreaking episode NBC; by Jill Sederstrom; 1/30/25, published in our newsletter 2/4/25Attorney Nolan Price found himself at odds with his brother, played by Chatwin, as the siblings were forced to make a painful decision. ... Justin Chatwin — who rose to fame on the hit comedy-drama series Shameless — took on the role of Thomas Price, the brother of Executive Assistant District Attorney Nolan Price, in “The Hardest Thing" episode, which premiered on January 30, 2025. The siblings disagreed about how to handle their father’s failing health. ... The brothers had to decide whether they wanted to put in a feeding tube, which could prolong their dad’s life by a few months, or “manage his pain levels” to “make his passing as comfortable as possible," a doctor explained. 

Read More

‘Let’s talk’: How to help families have difficult conversations

06/12/25 at 03:00 AM

‘Let’s talk’: How to help families have difficult conversations Yale Medicine; by Carrie Macmillan; 6/10/25 At a time when modern medicine is allowing people to enjoy longer, fuller lives, mortality is not always a chief concern. But when a serious illness occurs, the topic becomes unavoidable. This became especially clear during the early days of the COVID-19 pandemic when hospitals were overrun with patients, many with grim prognoses. “The pandemic gave all of us a sense that life can be short and there’s the very real possibility of dying,” says Jennifer Kapo, MD, director of the Palliative Care Program at Yale New Haven Hospital. “It opened the door for us to talk more about death and have a better sense of our mortality.” ...

Read More

Understanding hospice care: Eligibility, cost and purpose

06/10/25 at 03:00 AM

Understanding hospice care: Eligibility, cost and purpose Emmanuel Hospice; 6/5/25 How do you want to live? It may be surprising to learn that’s the first question Emmanuel Hospice asks every new patient. Isn’t hospice about dying? While hospice is often associated with death, Melissa Wedberg will tell you it’s more about living, especially at Emmanuel Hospice, where she serves as vice president of community relations. With more than a decade in the hospice industry, Wedberg has spent years dispelling this and many other myths. Despite having roots in the U.S. dating back to the 70s, there remains a lot of mystery about hospice. Common questions Wedberg hears include: What is hospice and who’s eligible? How does hospice work? How is hospice paid for? Editor's note: This simple question jumps to the core of person-centered care, "How do you want to live?"

Read More

A World War II hero is facing his final battle - with Medicare | PennLive letters

06/09/25 at 02:00 AM

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?

Read More