Literature Review

Patient-and caregiver-identified goals for advance care planning in patients with dementia or cognitive impairmentDementia; by Kristin L Rising, Angela M Gerolamo, Nazanin Sarpoulaki, Venise J Salcedo, Grace Amadio, Robin Casten, Anna Marie Chang, Alexzandra T Gentsch, C Virginia O'Hayer, Barry Rovner, Brooke Worster; 8/25Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific.

Benefits and burdens of research participation: A mixed methods systematic review in palliative and end-of-life careJournal of Hospice and Palliative Nursing; by Cara L Wallace, Stephanie P Wladkowski, Ruaa Al-Juboori, Anna Wingo, Kathryn W Coccia, Rebecca Hyde, Verna Hendricks-Ferguson; 8/25Research participation of hospice and palliative care patients and family caregivers is essential to develop and test best practices. Yet, healthcare professionals are often hesitant to ask patients and caregivers to participate in research, fearing it is too intrusive or unethical during a sensitive time. This review focused on the motivating factors, benefits, and burdens of research participation for patients with serious illness and their family caregivers. For clinicians and researchers, connecting patients and caregivers to palliative and end-of-life research may be both beneficial as a contribution to scientific literature and as an additional source of ongoing support.

Sexuality and intimacy in the context of palliative and end-of-life care: A scoping reviewInternational Journal of Palliative Nursing; by Michelle Traverse, Susan D Mueller, Susan DeSanto-Madeya, Melissa A Sutherland; 8/25This scoping review identifies what is known about patient/partner sexuality and intimacy needs during end-of-life care and how healthcare professionals' (HCPs) approach these needs. A total of 18 articles were included in the review. Four themes were identified: 1) negative impact of serious illness on sexuality and intimacy, 2) barriers and facilitators to addressing sexuality, 3) tension between expansive and genital-focused approaches to sexuality and intimacy, and 4) a disconnect between patient/partner needs and HCP preparation. HCPs require clear and comprehensive training to improve their ability to address sexuality and intimacy during end-of-life care. Taking an expansive view of sexuality and intimacy during this time may facilitate HCP interventions.

Conversational AI in hospice care: risks and benefits Hospice News; by Jim Parker; 8/29/25 Numerous types of artificial intelligence (AI) have gained a substantial foothold in health care, including hospices, with conversational AI among them. Conversational AI uses natural language processing and machine learning to develop virtual assistants and chatbots that can automate certain functions. ... The use of conversational AI in health care for the most part falls into two categories — delivery of remote health services and administrative assistance to health care providers, according to 2024 research published in the Journal of Medical Internet Research. ... However, the technology has limitations, the study found. These include ethical challenges, legal and safety concerns, technical difficulties, user experience issues and societal and economic impacts.

Advance care planning in Hispanic populations with Parkinson’s Disease: Investigating disparities in end-of life careClinical Parkinsonism & Related Disorders; by Taylor Peabody, Monica Abou-Ezzi, Lucila Hernandez, Henry Moore, Silvia Vargas-Parra, Alberto Cruz, Danielle S. Shpiner; 8/25ACP [advance care planning] is a topic of increasingly recognized importance among the PD [Parkinson's disease] research and patient communities. Despite evidence that many people with PD across ethnic groups consider this topic important, our study showed that Hispanic people with PD may have less access and experience with this aspect of care. These findings represent an important area for future study, so that all people with PD can benefit from the opportunity to participate in ACP if in alignment with their goals of care.

Guest Voice: What ‘It’s a Wonderful Life’ teaches us about living with MS Multiple Sclerosis News Today; by Donald Kushner, MD; 8/15/25 Donald Kushner, MD, is a retired physician, board certified in internal medicine and hospice and palliative care. He has been living with multiple sclerosis (MS) for more than 20 years and draws on his dual perspective as both doctor and patient to explore illness, identity, and adaptation. He’s writing a book about how people with chronic illness and their support systems can better understand — and talk to — each other.

The future of work: Prioritizing human connection with Ryan Jenkins Teleios Collaborative Network (TCN) - Anatomy of Leadership; podcast/video by Chris Comeaux with Ryan Jenkins; 8/13/25 "Connection isn't new, it's just neglected. And it's neglected now more than ever." These powerful words from Wall Street Journal bestselling author Ryan Jenkins set the stage for a transformative conversation about what might be our most critical yet overlooked human need. Despite our hyperconnected world of social media, texting, and endless digital communication, genuine connection continues to slip through our fingers. Jenkins reveals the crucial distinction between mere communication and true connection – explaining how our brains process these experiences differently and why it matters so profoundly.

Do not resuscitate (DNR) emergency medical services (EMS) protocol variation in the United StatesThe American Journal of Emergency Medicine; by Amelia M Breyre, E Jane Merkle-Scotland, David H Yang, Kenneth Hanson, Sameer Jagani, Abe Tolkoff, Satheesh Gunaga; 7/25Do Not Resuscitate (DNR) orders are essential for ensuring that critically ill patients receive care from Emergency Medical Service (EMS) aligned with their preferences. However, significant variations exist in EMS protocols regarding acceptable DNR documentation leading to discordant care, moral distress, and ethical dilemmas. Although most EMS protocols have dedicated DNR protocols, this is not universal and there is significant variability in types of documentation recognized as valid. Documentation that is concise, portable, and designed for EMS use, such as the POLST is preferred. Assistant Editor's note: It is this variability in protocols that personally scares many of us who work in the EOL field. It is not uncommon to hear a hospice/palliative worker joke that they want a "DNR tatoo on their chest"! Perhaps it would be easier (and less painful) to continue to promote POLST, or something similar, in each of our respective workplaces.

Communication and end-of-life care in dementia: insights from a close family member working in healthcare British Journal of Community Nursing; by Jennifer M Hadley; 7/31/25 There is very little documented evidence on the experiences of healthcare professionals caring for their own family outside of their role. This article explores the differences in the care received as the author shares her perspectives of caring for her mother, who was diagnosed with dementia. The author reflects on the care received and the impact of communication, as well as the ethical limitations of caring for a member of her own family. Significant references to communication barriers already exist within the literature, relating to end-of-life conversations. The presence of a relative who has a healthcare background may further impact the communication approach of healthcare professionals.

Palliative delays associated with increased length of stay in older traumatic brain injury patientsThe Journal of Trauma & Acute Care Surgery; by Sarah A Hatfield, Parima Safe, Cleo Siderides, Anjile An, Cassandra V Villegas, Nicole Goulet, Robert J Winchell, Elizabeth Gorman; 7/25Trauma Quality Improvement Program guidelines recommend early goals of care discussions (≤72 hours) for older patients with severe injuries. Patients (55 years or older) with moderate to severe TBI [traumatic brain injury] ... were retrospectively identified at a level I trauma center (2020-2022). Conclusions: Delayed PI [palliative intervention] is associated with increased LOS [length of stay] in older TBI patients, with no survival difference compared with early PI. Palliative interventions should be introduced early to reduce morbidity in patients with potential poor prognosis.

[Sweden] Ethical reflection: The palliative care ethos and patients who refuse informationPalliative Care & Social Practice; Joar Björk; 7/25Situations wherein a patient refuses potentially important information present tricky ethical challenges for palliative care staff. Taken as a whole, the palliative care ethos seems to recommend a strategy of using communication skills and time to try to get information across to the patient without forcing things. The recommendation is nuanced and highly contextualised, which increases its validity for clinical practice. Some meta-ethical questions are discussed regarding the use of the palliative care ethos as a source of guidance in ethically challenging clinical situations.

Effect of a multi-component palliative care intervention on goals of care discussions for critical patients in the emergency departmentInternal & Emergency Medicine; by Julia Murray, Zacharia Grami, Katherine Benson, Christopher Hritz, Samantha Lawson, Corita Reilley Grudzen, Allison Cuthel, Lauren Talanda-Fath Southerland; 7/25Goals of care (GOC) discussions are vital to understanding patients' values and preferences during serious illness, but they occur infrequently during Emergency Department (ED) care. We report a single site sub-study of a stepped wedge pragmatic trial of a multi-component intervention of primary palliative care in the ED (PRIM-ER), focused on GOC conversations. The intervention did not change the proportion of patients receiving a GOC conversation in the ED ... [however patients] presenting with a cancer-related complaint ... or a respiratory emergency ... were associated with increased odds of a GOC conversation occurring. Of the 60 GOC conversations that occurred, 76.7% ... resulted in a change in code status, patient care plans, hospice, or updated advance care planning documents. While the intervention did not increase this secondary outcome of GOC conversations, the discussions that did occur frequently impacted ED care.Assistant Editor's note: This study concluded that the intervention employed in the ED did not increase the proportion of patients receiving GOC conversations. Yet the study also concluded that almost 77% of the patients who DID receive the conversation had a change in code status, care plan, hospice or advance care planning documents. This study clearly reminds us that GOC conversations, employed even in the ED, can help patients embrace a palliative approach to care when faced with serious illness.

Hearing loss, loneliness may contribute to cognitive decline in older adults McKnights Senior Living; by John Roszkowski; 7/28/25 Hearing loss and loneliness can contribute to dementia in older adults, and simple interventions to address hearing loss, such as hearing aids, may reduce cognitive decline in some cases, new research finds. ... Results of the study showed that higher levels and worsening self-reported hearing impairment were associated with steeper decline in episodic memory issues and executive functioning (verbal fluency). Further, the researchers found that individuals who were not socially isolated but still felt lonely saw their cognitive decline accelerate if they were deaf.