Literature Review

Assessing the perspectives of genetic counselors with oncology patients at the end of lifeJournal of Genetic Counseling; Rosalyn D. Brown, Lori Williamson, Natalie Brooke Peeples, Jing Jin, Alexandrea Wadley; 8/25Cancer genetic services identify individuals that may have a hereditary component to cancer, as it is estimated that up to 10% of cancers are due to a cancer-predisposition gene variant. When an oncology patient has reached the end of life (EOL), genetic counseling and testing may benefit the patient and their family by clarifying hereditary cancer risks. Despite high comfort and preparedness, 77% of respondents desired additional educational training opportunities about providing genetic counseling to oncology patients at the EOL, supporting the need for ongoing education opportunities. The high comfort levels and preparedness reported in this study suggest that genetic counselors are ready and willing to counsel patients facing a terminal diagnosis of cancer and should be further integrated into multidisciplinary teams.

A hospice intervention for caregivers: Improving home hospice management of end-of-life symptoms (I-HoME) pilot study Journal of the American Geriatrics Society; by Veerawat Phongtankuel, Sara J. Czaja, Taeyoung Park, Jerad Moxley, Ronald D. Adelman, Ritchell Dignam, Dulce M. Cruz-Oliver, Micah Denzel Toliver, M. C. Reid; 9/24/25 Background: While home-based hospice care seeks to reduce suffering at the end of life (EoL), patients continue to experience a high symptom burden. High symptom burden contributes to adverse outcomes, including patient suffering, burdensome care transitions, and caregiver burden. Yet, most caregivers lack formal education in patient symptom management despite providing up to 65 h of care per week. ... Conclusion: The I-HoME intervention was feasible to implement in the home hospice setting and acceptable to caregivers and hospice staff. Future efficacy trials are needed to determine whether this caregiver-focused intervention ... can measurably improve patient and caregiver outcomes in the home hospice setting.

A rapid review of states' Portable Medical Order forms and the National POLST Paradigm for Advanced Care PlanningJournal of Hospice and Palliative Nursing; by Tracy Fasolino, Megan Pate, Nancy Dias, Rikki Hooper, Lena Burgess, Megan Golden, Savannah Horvick, Jamie Rouse, Elizabeth Snyder; 8/25Hospice and palliative care nurses initiate goals of care conversations with patients and family members while advocating for the completion of advance directives. As leaders in these conversations, nurses must have a working knowledge of the various forms, such as portable medical orders. The National Physician Orders for Life-Sustaining Treatment (POLST) Paradigm calls for the standardization of portable medical orders to ensure goal-concordant care that can cross all healthcare settings. This rapid review provides an overview of state-level portable medical order forms, compares and contrasts them with the National POLST form, and proposes policy recommendations for hospice and palliative care nurses to advocate within their state, territory, or tribal nation. 

Associations of patient experience with doctor-patient communication and patient-reported physical and mental health in seriously ill adultsJournal of Patient Experience; by Sarah F. D’Ambruoso, Anne M. Walling, Neil S. Wenger, Rebecca L. Sudore, Lisa Gibbs, Maryam Rahimi, Ron D. Hays; 8/25We administered the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) communication scale, Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items, and the PROMIS-29 depression and anxiety scales. Better global health (PROMIS) at baseline was associated with better doctor-patient communication (CAHPS) at 12 months ... and better doctor-patient communication at baseline was related to better mental health at follow-up ...The results suggest that patients’ overall health may influence doctor-patient communication, and this communication may impact patients’ mental health over time.

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.