Literature Review

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.]

Disclosure practices in Muslim patients and the impact on end-of-life care: A narrative review American Journal of Hospice and Palliative Care; by Mona Tereen; 11/26/24 ... Non-disclosure practices hold significant weight in end-of-life care for Muslim communities, where cultural and religious beliefs are deeply intertwined with healthcare decision-making. This narrative review explores the complexities of medical decision-making and disclosure practices among terminally ill Muslim patients, examining how these factors shape palliative care delivery. Conclusion: Non-disclosure practices present significant barriers to effective palliative care in Muslim communities. To improve care outcomes, culturally competent communication strategies and family-centered decision-making models are crucial.

Early palliative care linked to better end-of-life outcomes in ovarian cancer AJMC - The American Journal of Managed Care, Cranbury, NJ; by Brooke McCormick; 11/22/24 Initiating palliative care (PC) more than 3 months before death was associated with improved quality of care and reduced care intensity at the end of life (EOL) for decedents with ovarian cancer, according to a study published in JAMA Network Open. Alongside oncologic treatment, the American Society of Clinical Oncology recommends all patients with advanced cancer receive early, dedicated PC within 8 weeks of diagnosis. PC benefits include prolonged survival, enhanced quality of EOL care, and improved patient and caregiver quality of life (QOL). Early referral to specialist PC is also linked to less aggressive EOL care. 

A guiding light: hospice care social workers provide support for dealing with the idea of death Scot Scoop - Carlmont High School's Student News Site; by Rei Baxter; 11/20/24 Death is a natural part of life, yet it is also terrifying. Being young and dying is especially difficult to accept. Regina Tong, a hospice social worker, has to deal with difficult cases. "The hardest parts for me are the young patients, like the moms with children, or younger people who are just not ready to die, but they get this terminal illness, and their parents are grieving. Those are really hard for me,” Tong said. ... Before starting in hospice, Tong worked in nursing homes and palliative care patients, who are people that aren’t quite hospice level but have chronic illnesses. However, when her mom died, she realized that she needed to stretch her boundaries and learn more about something she was uncomfortable with: death. “That’s why I’m here. The more I work in hospice, the more I realize how important inner peace is. I see a lot of patients who are at the end of their lives, and they really struggle with the idea of death, even though it’s a natural process of everything that has a life. So people who resisted end up suffering so much towards the end,” Tong said. Tong’s work doesn’t just help her patients and their families; it helps her connect more with herself. ...Editor's note: Rei Baxter--this article's author--is a high school senior. This beautiful article gifts us with a prelude into Thanksgiving week, as we gather with intergenerational families and tune into what matters most.

Educating patients and clinicians on end-of-life care and discussions CancerNetwork - home of the journal Oncology; by Kelley A. Rone, DNP, RN, AGNP-c CancerNetwork® sat down with Kelley A. Rone, DNP, RN, AGNP-c, to discuss the importance of speaking compassionately and ensuring patient awareness when leading end-of-life discussions among those with gastrointestinal (GI) cancers. The discussion also focused on combating burnout in the clinic, using opioids to help manage pain and other symptoms, and educating all members of a multidisciplinary team on initiating end-of-life conversations with their patients. ... As part of leading these end-of-life conversations, Rone emphasized the necessity of addressing the discomfort patients tend to feel when talking about the fact that they may die from their cancer. ... When working with other members of a multidisciplinary care team, Rone illustrated the challenge of having physicians understand that their treatments may fail in younger patients and helping other oncologists become more experienced in speaking about death with patients. ...

The dozen phrases doctors warned never say to patients, including ‘everything is going to be fine’ What's New 2Day; by Alexander; 11/8/24 “Everything is going to be okay.” No doubt you or someone you know has heard those words from a doctor, but doctors are now being warned to stop doing so because it could raise false hope. A new report has identified 12 “never phrases” that doctors should never use with patients with serious illnesses, such as heart failure, cancer and lung disease. They explain that these “isolated words or phrases not only lack benefits but can also cause emotional harm and accentuate power differences.” If a patient is seriously ill, for example, a doctor should never mention the words “withdraw care,” as this implies that the medical team is “giving up.” While “everything will be okay” may seem like a comforting phrase, researchers say this could offer false hope when dealing with a serious illness and a better expression might be “I’m here to support you through this whole process.” [Click on the title's link for the dozen phrases they identify, with alternative language and rationale.]

We invite you to listen to our latest podcast: Imagine Heaven, with John Burke TCN Talks (Teleios Collaborative Network); podcast by Chris Comeaux; 10/30/24 In this inspiring episode of TCNtalks, Chris Comeaux sits down with John Burke, New York Times bestselling author of Imagine Heaven and Imagine the God of Heaven, for a soul-stirring conversation on near-death experiences (NDEs) and their profound implications. John shares the overwhelming evidence of the commonalities of near-death experiences (NDEs) and the evidence that supports their validity from across the world and from across many different cultures.  Chris begins by recounting his own transformative experience reading Imagine Heaven over his summer sabbatical, describing it as a refreshing oasis for the parched soul. John delves into the fascinating and consistent patterns found in NDEs worldwide, revealing how people from vastly different backgrounds describe similar encounters of leaving their bodies, seeing with a spiritual clarity—even those blind from birth—and entering realms filled with light, love, and peace. 

Creating death box eases stress, brings 'peace of mind' to those left behind BradfordToday.ca, Canada; by Andrew Philips; 10/26/24 Creating a death box might sound like sort of a morbid thing to do, but it’s vitally important. That’s according to Tammy Vaters, supportive care coordinator at Hospice Huronia-Tomkins House, ... who leads upcoming workshops on creating a death box or a “legacy box or final wishes box” for those uncomfortable with the more succinct terminology ["death box"]. ... Besides end-of-life wishes, Vaters says the box can include photos that someone would like displayed at a celebration of life or similar offering along with personalized letters to family and friends and personal mementos that have special meaning. “It gives you more opportunities of expressing how you feel about somebody,” she says, noting the boxes should also contain usernames and passwords that may aid one's loved ones after death. “They can be more thoughtful and personal.” Vaters, who is a specialist in thanatology (the study of death, dying and bereavement), says people will often use another term for death. 

The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons Springer Nature Link - Open Access; by Gülay Ate, Michaela Hesse and Henning Cuhls; 10/25/24Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. ... Conclusions: The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents. Editor's note: While this service and this evaluation are located in Germany, it can be replicated easily with today's user-friendly technologies. First and foremost are patient empowerment, privacy, and ownership of these most personal messages. Examine using your spiritual care, social work, and/or grief counselors to facilitate this project.

‘Let patients lead the way’: Hospice veterans’ advice for new nurses Hospice News; by Jim Parker; 10/25/24 ... A key barrier to building [the hospice and palliative care] workforce is that, with some exceptions, most clinicians receive little to no exposure to those types of care during their training. Nurses who are new to the hospice space often face a learning curve, according to Briana Hilmer, an Iowa-based admissions nurse for St. Croix Hospice.

Busting palliative care misconceptions in cancer care Cure; by Alex Biese; 10/22/24 Palliative care can serve a crucial function for patients living with serious illnesses such as cancer, as an expert explained in an interview with CURE®. “Palliative care is sub-specialized health care for patients living with serious illness, where we're really focused on alleviating the symptoms and the stress associated with illness, and our goal is to improve quality of life for patients and their families,” said Dr. Cari Low of the University of Utah Huntsman Cancer Institute. ... However, some misconceptions persist regarding palliative care — most prominently that it is synonymous with hospice care. ... "We [i.e., palliative care] follow patients from the time of diagnosis through their curative cancer treatment and throughout their journey and into survivorship. ... Hospice is really focused on end-of-life care and comfort when cancer treatments no longer make sense. So, I really think of palliative care as this great big umbrella of support throughout the entire journey, where hospice is just a tiny piece of that umbrella.”

Communication gaps among clinicians may limit conversations about prognosis, hospice Healio - HemOncToday; by Jennifer Byrne; 10/16/24 Clinicians in acute or post-acute care settings may delay or avoid serious illness conversations with patients whose cancer prognoses are worsening out of deference to the patient’s oncologist, according to study findings. Researchers conducted 37 semi-structured interviews with physicians and leaders in hospital medicine, oncology, palliative care, home health care and hospice. Investigators coded and analyzed the interviews using thematic content analysis. Evaluation of the responses yielded insights into how care silos, lack of clear clinical roles and other factors may affect communication between oncologists and other clinicians. ... "We know that the 3-month window after an older adult with cancer is discharged to a skilled nursing facility can be comprised of complex medical decision making and changing preferences of care. Lack of appropriate serious illness communication during this time can result in unwanted hospitalizations and unwanted, aggressive care at the end of life."