Literature Review

UConn John Dempsey Hospital joins National Age-Friendly Health System Movement UConn Today; by Jennifer Walker; 12/12/24 UConn John Dempsey Hospital was recently accepted for participation in the national Age-Friendly Healthy Systems Movement to improve health care for older adults. The Age-Friendly Health Systems Movement, sponsored by The John A. Hartford Foundation and the Institute for Healthcare Improvement in partnership with the American Hospital Association and the Catholic Health Association of the United States​, is a national collaboration of hospitals and health systems implementing a set of evidence-based interventions to make the care of all older adults equitable and age-friendly. This initiative addresses the reality that a growing proportion of the US population is elderly and has complex healthcare needs which challenge many institutions. This movement is built upon a framework of a set of four best practice interventions known as the 4Ms.

New fellowship will help imprisoned women plan for end of life Washington State University - WSU Insider; by Scott Swybright; 12/9/24 Incarcerated individuals have few personal rights, but one they do retain is the ability to create advance directive plans for their health care. Unfortunately, few know that this is the case. A new project led by a Washington State University graduate student will educate more incarcerated people about their options as they approach the end of their lives. “When folks are incarcerated, they lose most of their bodily autonomy and basically become property of the government,” said Tosha Big Eagle, a doctoral student in WSU’s prevention science program at the WSU Vancouver campus. “Advance directives are one outlier, but nobody tells them about that right.” To help educate prisoners, Big Eagle recently received a fellowship from The Order of the Good Death, a group helping all people face end-of-life concerns, fears, and legalities. Big Eagle’s project will focus on ensuring incarcerated people at the Washington Corrections Center for Women (WCCW) have access to end-of-life resources.

What adult children should know when discussing their parents’ end-of-life care StudyFinds; by StudyFindsStaff, reviewed by Christ Melore; 12/8/24 Talking about death can be difficult for anyone at any time. For adult children who need to know their parents’ final wishes, it can be excruciating. A new survey is revealing the stark disconnect between our beliefs and actions when it comes to end-of-life planning. While an overwhelming 90% of adults recognize the importance of these critical conversations, half have yet to take the first step with their closest loved ones. ... The numbers tell a revealing story. Twenty-six percent of respondents simply keep putting off the conversation, while 23% admit they don’t know how to approach the topic. Sixteen percent are outright scared to broach the subject, creating a wall of silence around a universal human experience. ... When people do open up, the conversations prove surprisingly rich and multifaceted.

Caring for patients at the end of life: CEJA reports AMA - American Medical Association; by Council on Ethical and Judicial Affairs (CEJA); 12/2/24 Reports by the Council on Ethical and Judicial Affairs (CEJA) interpret the AMA Principles of Medical Ethics to provide practical ethics guidance on timely topics. When the AMA House of Delegates adopts the recommendations of a CEJA report they become Opinions in the Code of Medical Ethics. The body of the report, which sets out CEJA’s ethics analysis, is archived and remains available as a resource to help users apply guidance. CEJA reports may not be reproduced without express written permission. [Click here to access these CEJA reports.]

Early hospice care has transformative impact McKnights Senior Living; guest column by Aaron Housh, CEO of Good Samaritan Hospice in Roanoke and Christiansburg, VA; 11/25/24 Hospice care is more than a medical service — it’s a lifeline of compassion, connection and support during one of life’s most vulnerable moments. For more than 20 years, I’ve witnessed the profound impact hospice can have, not just on residents and patients but on the families who love and care for them. But this impact is magnified when hospice care is introduced early. ... One of the greatest gifts hospice provides is time — time to prepare, time to connect and time to say goodbye. A friend once shared how hospice changed her family’s experience with her mother’s death. The nurse spent time explaining what to expect, answering questions and normalizing the changes they were seeing. That preparation eliminated panic, allowing the family to focus on being present. Her mother passed with dignity, surrounded by love and understanding. This story illustrates what I’ve seen time and again: families who enter hospice early have the opportunity to build trust with their care team, process emotions and fully use the services available to them. Those families are better equipped to navigate the physical and emotional challenges of end-of-life care, creating space for meaningful moments and lasting memories.

If my dying daughter could face her mortality, why couldn’t the rest of us? DNYUZ, appearing first in The New York Times; Ms. Wildman; 11/25/24 The first week of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even. In reality, we were at the end of a reprieve. Orli’s liver cancer had by then been assaulted by two years of treatments — chemotherapy, a liver transplant, more chemotherapy, seven surgeries. Now new metastases lit up a corner of one lung on scans, asymptomatic but foreboding. We asked her medical team if we might show her a bit of the world before more procedures. Our oncologist balked. Hence, this brief weekend away. When we arrived at the beach Orli ran directly to the water, then came back and stretched out on a lounge chair. She turned to me and asked, “What if this is the best I ever feel again?” Three hundred and seventy-six days later, she was dead. In the time since she left us, I have thought often of Orli’s question. All that spring, Orli asked, pointedly, why did we think a cure was still possible, that cancer would not continue to return? Left unspoken: Was she going to die from her disease? It was a conversation she wanted to have. And yet what we found over the wild course of her illness was that such conversations are often discouraged, in the doctor’s office and outside it. ... [Click on the title's link to continue reading this profound story.]Editor's note: While families are gathered for Thanksgiving, many health changes will be observed since this time last Thanksgiving, with countless unknowns to unfold until Thanksgiving next year. Tune into the wide scope of conversations that people do want to have, don't want to have, and--perhaps--that your own family needs to have, with grace and care for all.

Addressing barriers to advance care planning by adults with advanced cancers Regenstrief Institute, Indianapolis, IN; by Shelley Johns, PsyD and Susan Hickman, PhD; 11/25/24 In one of the first studies to test the utility of mindfulness to support advance care planning by adult cancer patients and their family caregivers, researchers from Regenstrief Institute and Indiana University have found that mindfulness showed promise in improving quality of life and advance care planning outcomes in patients and their family caregivers coping with advanced cancer. ... Mindfulness emphasizes paying attention to the present moment with an attitude of openness, compassion and interested curiosity accomplished through meditation and other exercises to manage stress. “Mindfulness is about noticing what’s here so we can choose the wisest response and hopefully be less emotionally reactive,” said Dr. Johns. “Mindfulness practices help individuals increase their mindfulness muscle, so to speak. Anything that we do in our life ... can be done with mindful focus, with mindful attention."

It's not just pumpkin spice time--it's time for the family conversation! Dunlap Bennet & Ludwig; by George Reilly; 11/13/24 “Quality family time” is a phrase often heard in the period from Thanksgiving to New Year’s, sometimes even with air quotes, to describe what many people believe to be a necessary, but not necessarily enjoyable, time of family togetherness. ... Whatever your perspective on this “quality family time,” chances are that for most of you, it was/will be a missed opportunity to discuss very important matters with your loved ones—namely what happens in the event of disability or death; who takes care of what; a parent’s (or grandparents, or your own) wishes on the end of life medical care and funeral/burial/cremation choices; your wishes on guardians for minor children; and other critical, but admittedly sensitive and gloomy topics. ...  Consider these statistics from surveys conducted by the Conversation Project: ... 92% of Americans say it’s important to discuss their wishes for end-of-life care, but only 32% have had such a conversation! [Click on the title's link to continue reading.]

Startup Guaranteed looks to improve end-of-life care Healthcare Brew; by Cassie McGrath; 11/6/24 After losing her father, Jessica McGlory founded a startup to improve end-of-life care. In August 2019, Jessica McGlory got a call that her father had had a double heart attack and was admitted to a hospital in Chicago. As his health declined, McGlory became his caregiver and healthcare proxy. But she said she never got the opportunity to discuss her father’s end-of-life care or his wishes. “I thought it was going to be an opportunity to really focus on my loved one, but instead, [I] had to focus on everything else and really didn’t get the support [I] expected from the hospice,” she told Healthcare Brew. Hospice is palliative care that typically includes counseling, physical care, medicine, and equipment for patients with terminal illnesses. Two years later, despite having no previous experience in healthcare, McGlory decided to take action. In 2022, she launched Guaranteed, a New York-based hybrid end-of-life care startup that works to support people with terminal illness as well as their loved ones and caregivers. ... Guaranteed has raised $10 million to date and is looking to expand into three more states next year, she said.

“Postponing it any later would not be so great”: A cognitive interview study of how physicians decide to initiate goals of care discussions in the hospitalAmerican Journal of Hospice and Palliative Medicine; by Elizabeth Chuang, Sabrina Gugliuzza, Ammar Ahmad, Michael Aboodi, Michelle Ng Gong, Amber E Barnato; 11/24Participants were hesitant to commit to the present moment as the right time for [goals of care] GOC discussions based on variations in clinical presentation. Clinical decision support systems that include more targeted information about risk of clinical deterioration and likelihood of reversal of the acute condition may prompt physicians to discuss GOC, but more support for managing discomfort with uncertainty is also needed.

"Courageous Conversations" during National Hospice and Palliative Care month NBC Tri-Cities, Yakima, WA; by Laynie Erickson; 11/4/24 November is National Hospice and Palliative Care month. Tri-Cities Chaplaincy is spending this month embracing what they call "courageous conversations".  Laurie Jackson, CEO of Tri-Cities Chaplaincy said this month they are encouraging the community to have conversations early about hospice and palliative care. Jackson said making these kind of decisions in crisis is challenging. "It always seems like its too soon to have 'that' conversation until it's too late," said Jackson. Although these "courageous conversations" can be difficult, Jackson said it is important to explore your options. "It always seems like its too soon to have 'that' conversation until it's too late," said Jackson. Although these "courageous conversations" can be difficult, Jackson said it is important to explore your options.

Guidelines vary when surrogates with power of attorney disagree with advance directives  Healio, Boston, MA; by Richard Gawel; 10/30/24 Inconsistent guidelines can lead to conflicts when surrogates with powers of attorney disagree with what may be described in a patient’s advance directive, according to a poster presented at the CHEST Annual Meeting. ... Key takeaways:

A moral code: Ethical dilemmas in medicine — three physicians face crossroads in patient care MedPage Today; podcast by Genevieve Friedman, Perspectives Editor; 10/25/24 We are back for another episode of our medical podcast, which we hope isn't really a podcast about medicine, but a podcast about life, death, dilemma, the challenges, and sometimes the joys of medicine. ... Now, medicine is complicated because a lot of times there aren't hard and fast rules ... One treatment isn't always right or wrong for someone. One surgery isn't always successful or unsuccessful, and one diagnosis isn't always correct. Decisions aren't black and white, they're varying shades of gray. So we come up with principles to help handle this -- codes if you will. But even those get a bit marred by complexity at times. As you'll hear in this episode of Anamnesis with the theme of "A Moral Code: Ethical Dilemmas in Medicine," one of our biggest codes is "do no harm." But what is harm? Who decides what harm is, what happens if we disagree?