Literature Review

The Faith Care Family Project: A pilot intervention for African American dementia family caregiversAmerican Journal of Alzheimer's Disease and Other Dementias; Noelle L Fields, Ling Xu, Ishan C Williams, Fayron Epps, Samantha Tinker; 8/25The Faith Care Family (FCF) Project was a telephone based, volunteer-led intervention for African American Alzheimer’s disease and related dementias (AD/ADRD) family caregivers that was piloted in one predominantly African American church. Church volunteers indicated overall significant improvements knowledge of AD/ADRD after the training as well as after the intervention. Quantitative results indicated that caregivers increased their knowledge of dementia, reported improved coping skills, and reported increased positive aspects of caregiving. Feeling a connection, normalizing the challenges of caregiving, gaining or reinforcing knowledge, and sharing community resources were themes from qualitative interviews with the family caregivers.

Hands Journal of the American Medical Association (JAMA); by R. Jordan Williams, MD, MPH; 8/13/25Lend me your hand Callused or calaminedWrinkled or plump,Nails bittenNails extendedSplintered and pittedNails neatly or never cropped.Lend me your hand Strong or weak Cold or warmingSwollen and swanned; Gnarled in knots ...Editor's Note: Continue reading this powerful poem. Additionally, JAMA published this description of the poem, "Poetry and the Medicine of Touch" by Rafael Campo, MD, MA: "In this deeply felt poem, the hand becomes a potent metaphor for our shared humanity ... Aspiring clinicians are still taught to assess, to palpate, to diagnose through touch. Yet, as “Hands” reminds us, patients’ hands hold far more than clinical signs—they reflect stories, histories, fears, and hopes. ..."

[Belgium] Christian perspectives on palliative sedation: A literature studyBMC Palliative Care; Jonathan Lambaerts, Bert Broeckaert; 7/25Overall, there is a positive but cautious attitude towards palliative sedation in the four major Christian traditions. All recognise that palliative sedation can help alleviate patient suffering. They remain cautious in their support, however, as they consider the line between palliative sedation and life-ending treatments (e.g. euthanasia) to be too blurred. Moreover, the Christian traditions are aware that lowering the level of consciousness is not without its problems.

Demystifying dying in end-of-life-care: A phenomenological perspective Death Studies; by Elisabet Sernbo, Magnus Weber, Charlotta Öhrling, Stina Nyblom; 8/26/25 This article focuses on experiences of the process of dying. The empirical material consists of interviews with patients in palliative care and their significant others. The analysis draws attention to the lived experiences of the participants - embedded in time, identities, social relations, and everyday lives - and to how the possibility of sense-making is conditioned by the lifeworld. ... [This] needs to be understood as reorienting work: supporting people when their lines become disrupted or need to be altered. This requires a display of radical empathy ...

Tennessee plans to execute inmate amid concerns his heart implant will shock him repeatedly CNN; by Dakin Andone; 8/4/25 Tennessee plans to execute Byron Black on Tuesday for the 1988 murders of a woman and her two young daughters, despite concerns from his attorneys that a device implanted to restore his heartbeat could repeatedly shock him as he’s put to death. The device – an implantable cardioverter-defibrillator, or ICD – is at the center of a court battle that has been unfolding for several weeks. Black’s attorneys want the device deactivated at or immediately before his lethal injection Tuesday morning. If it isn’t, they say the effects of the lethal injection drugs will cause the ICD to shock Black’s heart, perhaps repeatedly, in an attempt to restore it to a normal rhythm. This will cause Black a prolonged and torturous execution, the attorneys argue, violating Eighth Amendment protections against cruel and unusual punishment.Editor's Note: Though this is not a hospice case, this traumatic scenario for persons with implantable cardioverter-defibrillator being repeatedly shocked--even after death--is crucial for the hospice interdisciplinary to know. Clinical, ethical, and legal issues abound. Click here for Shocked at End-of-Life: An Educational Video for Hospice Workers about Implantable Cardioverter-Defibrillators, research published by the Journal of Pain and Symptom Management, May 2024.

Prairie Doc Perspective: Navigating spiritual pain and grief Rawlins Times - Prairie Doc Perspective, Rawlins, WY; by Rev. Kari Sansgaard, Avera Hospice; 7/23/25 After nearly 20 years of parish ministry, I entered the world of health care, which, I learned, abounds in acronyms. My first clue was in chaplaincy training, known as CPE (Clinical Pastoral Education), the required education for most hospital and hospice chaplains. CNA, SoB (Shortness of Breath), PRN, HoH (Hard of Hearing), and a myriad of other acronyms are now part of my own vernacular. QoL (Quality of Life) is the big one in hospice, sometimes called “comfort care.” When quantity of life becomes diminished, it’s all about quality. ... In hospice, when death is impending, spiritual pain can lead us to ponder existential questions, such as the following:

Opinion: My health and my politics walk into a doctor’s office … The Washington Post; by Kim Fellner; 7/16/25 [Note: Access is behind a paid firewall, with an option to set up a temporary free account]... My palliative care doctor and I have almost nothing in common. We’re still learning from each other. ... It began simply enough. By October, my sarcoma had moved from possibly curable to definitively terminal, and, since metastasis to the bones can be painful, my anchor oncologist offered to connect me with a palliative care doctor to help with the physical and conceptual aches and pains of dying. Which seemed like a good thing to do. ... I did not anticipate, however, that the personal and the political would collide in my doctor’s office. ... [Descriptions unfold of significant, conflicted dialogue between (1) this Jewish daughter of holocaust survivors whose life-long vocation was social justice and (2) this Christian palliative care physician who asked about mental health and then dismissed this person's primary concerns that were affecting her dying.] ... Clearly, my doctor and I shared some beliefs about the importance of the palliative approach. ... But as the doctor noted, the best palliative care goes beyond the purely physical to address the more cosmic questions of life and death, and I was uncertain we were well matched as partners for this intimate process. ... I had no idea how to proceed. ... [More descriptions.] ... And that’s where the magic happened. Within a few days, my palliative care doctor sent me back a transparent, thoughtful and moving response. ... Her courage and openness, her willingness to risk a forthright response, have precipitated a remarkable dialogue about what each of us brings into the room, and how we can honor the space and each other once we get there. ... Editor's Note: Whatever one's political or religious stance, this article is sure to spark fireworks—of conflict, dissonance, and, hopefully, powerful insight. I encourage readers to engage with it attentively, attuned to three things:

Fireproofing the soul: Navigating fear of the afterlife among palliative care patientsJournal of Palliative Medicine; Ptr Shannon Blower, Jonathan Walker, Lucius Walker, Steven Radwany; 6/25Among palliative care patients, spiritual uncertainty about what may await them after death is a fairly common but often overlooked source of anxiety. Specifically, patients (especially those from orthodox Christian backgrounds that propound the concept of hell as a literal place) may harbor unexpressed fears about being consigned to hell due to the perceived sins they have committed in life. Such fears can be genuinely debilitating and may result in non-responsiveness to traditional palliative therapy. Here, we discuss our experiences with this phenomenon and propose some possible solutions. We offer readers suggestions for how to best identify potential sufferers, broach the subject with such patients, and reassure them.

[Ireland] Palliative care nurse specialists’ perspectives on spiritual care at end of life—A scoping reviewJournal of Hospice & Pallaitive Nursing; Dunning, Bronagh MSc, PGCert, BSc, RGN, RNT, FHEA; Connolly, Michael PhD, MSc, BA, RGN, RNT; Timmins, Fiona PhD, FAAN, MSc, BA (Open), BSc (Open), BNS, FFNRSCI, RNT, RGN; June 2025The purpose of this scoping review was to explore and to summarize the published literature on palliative care nurse specialist’s perspectives of spiritual care at end of life. The research demonstrates that specialist palliative care nurses perceive spiritual care as an important element of holistic care at end of life; however, these nurses also agree that spiritual care is lacking. This deficiency results from a lack of education in spirituality; experience of the nurse; the nurses’ own spiritual and religious beliefs and values, fears, and difficulties in communication; and the nurse-patient relationship. The findings demonstrate the necessity to increase the level of spiritual care education in nurse programs, educating nurses on the provision of spiritual care, and how to deal with conflicts in spiritual and religious beliefs.

From burnout to belonging: Creating space for grief in clinical education American Academy of Pediatrics (AAP) Journals Blog; by Rachita Gupta; 6/16/25 ... While significant progress has been made in addressing burnout and emotional distress in medicine, and in incorporating these topics into medical education, many clinicians remain hesitant and uncertain about how to address grief and distress from patient care in day-to-day clinical practice. This uncertainty exists both in terms of their own experiences and, even more so, in supporting trainees. A lack of emotional processing in these difficult situations can accelerate burnout and further disconnect clinicians from the humanism and vulnerability that are intrinsic to the privilege of practicing medicine. ... The recently published Hospital Pediatrics article by Bloomhardt et al, “Good Grief? Introducing the TEARS Framework for Educator to Support Learners Experiencing Grief,” (10.1542/hpeds.2024-008096) addresses the hesitancy many clinicians experience when assessing learners’ emotional processing during or after distressing patient cases by introducing the TEARS framework. ...Editor's Note: See a related post in today's newsletter, "“Her toes fell off into my hand”: 50 moments that changed healthcare workers forever."

‘Because I Knew You’: OHSU pediatric physician’s memoir reveals how treating kids helped him healOregon Public Broadcasting (OPB), Portland, OR; by Geoff Norcross, with Robert Macauley; 6/10/25 About 200 pages into Robert Macauley’s memoir, he takes up the big question of why God — if there is one — allows kids to suffer and die. “The best answer I’ve come up with — with three graduate degrees in theology from places like Oxford and Yale, followed by three decades as a physician-priest—is…” The next two pages are blank. This is what he writes next. “In other words, I don’t know. I don’t know why God lets such terrible things happen, which even someone as tragically flawed as me would make absolutely sure to prevent, given a pinch of omnipotence and a nanosecond to act.” Macauley deals with dying kids for a living. He’s a pediatrician at OHSU, and one of the few in the country certified in hospice and palliative care. He’s also an ordained Episcopal priest. His new memoir is called “Because I Knew You: How Some Remarkable Sick Kids Healed A Doctor’s Soul.” He spoke with OPB’s “All Things Considered” host Geoff Norcross. 

Hospice chaplain provides comfort in life's final moments Central Florida Public Media, Orlando, FL; by Bryan Gozalez and Claire Macchiarola; 6/4/25 The hum of an oxygen machine fills the room as Mary Durkin is helped from her bed and slowly takes a seat on her couch. As someone under home hospice care, the goal of her caretakers is to ensure the comfort of their patient as she nears the end of her life. And one of those caretakers is Vishisho Awomi, known to her patients as Chaplain Avika. She sits beside her, clasping Durkin’s small hands in her own for their weekly visit. Durkin is one of roughly 150 patients that fall under Avika’s spiritual care. As a hospice chaplain with VITAS Healthcare, it is Avika’s job to comfort, pray, or just be present with all of her patients. “I get to build that personal relationship and build that connection, I get to know that person from beginning to end,” Avika said. ...