Literature Review

[Israel] Existential suffering at the end of life in long-term care: A critical essay on recognition, dignity, and witnessPalliative Care & Social Practice; by Anat Romem, Rachel Bardach; 7/26Existential suffering is widely acknowledged in palliative care, but it remains inconsistently recognized and unevenly addressed in long-term care. This critical essay argues that the gap is not caused by clinician indifference, but by a persistent mismatch between whole-person ideals and care systems organized around measurable symptoms, risk management, task completion, and professional uncertainty. [This] ... essay identifies three interrelated shortcomings: the reduction of suffering to medically actionable symptoms; the depersonalizing effects of institutional routines on frail older adults; and the absence of shared existential literacy across interdisciplinary teams. The essay also cautions against romanticizing suffering or treating meaning-making as a clinical expectation. It proposes a practical framework of recognition, dignity, and witness: recognizing biography and identity as clinically relevant; protecting dignity in the ordinary details of care; and enacting witness ... Long-term care cannot resolve every existential wound, but it can reduce existential neglect by treating personhood as a core quality indicator of palliative care.

In a recent study, most oncologists chose not to assist patients in dying Cancer Therapy Advisor; by Jason L. Harris; 8/19/26 Most oncologists asked to consult with a terminally ill patient seeking medical aid in dying (MAID) choose to opt out, according to research published in JAMA Network Open. In a California-based study, researchers found high rates of oncologists opting out, forcing many patients to pursue MAID with physicians they did not know. Further, a small number of physicians were responsible for most MAID-related prescriptions. “Our dataset likely underestimates these challenges, as it only includes patients who successfully found an attending physician and does not capture instances when opt-out was not documented,” the researchers added.

Reports from Duke University describe recent advances in managed care (the South had the lowest rates of hospice and palliative medicine-certified providers in the Us, 2024): managed care Insurance Newsnet; by Staff; 8/13/26 A new study on Managed Care is now available. According to news reporting originating in Durham, North Carolina, by NewsRx journalists, research stated, “To improve access to care for serious illness, policy makers need evidence on how workforce capacity aligns with the need for palliative care. This study evaluated the palliative care workforce and policy environments at the state level, using a new data source: the 2024 Center to Advance Palliative Care’s comprehensive Serious Illness Scorecard.” Funders for this research include US Department of Veterans Affairs, Duke University, US Department of Veterans Affairs, Durham Center of Innovation to Accelerate Discover and Practice Transformation (ADAPT) at the Durham Veterans Affairs Health Care System. Read the study here.

Medical aid in dying: Bridging ethical guidance and bedside communication in nursing practiceJournal of Hospice & Palliative Nursing; by Jeanna Ford, Phyllis Whitehead; 7/26As MAiD [Medical aid in dying] becomes more integrated into serious illness care, nurses, particularly those in hospice and palliative care, are increasingly the first clinicians to receive patient questions about this option. These inquiries are often embedded in broader concerns related to suffering, loss of autonomy, fear of prolonged dying, and desire for control rather than solely requests for hastened death. The Hospice and Palliative Nurses Association’s recent position statement on medical aid in dying emphasizes compassionate, nonjudgmental care, respect for autonomy, professional integrity, and the ethical obligation of nonabandonment while recognizing the complexities of conscientious objection. This manuscript examines the evolving legal and ethical landscape of MAiD, explores the professional implications for nursing practice, and introduces the EXPLORE (Elicit, Explore, Probe Suffering, Learn Values, Observe Pressures, Review Support, Evaluate Next Steps) communication framework, a practice-based model developed to provide nurses with a structured, evidence-informed approach for responding to patient-initiated MAiD discussions. 

[Sweden] Effects and user-reported experiences of a self-management mobile health app for grieving adolescents: Randomized controlled trialJournal of Medical Internet Research; by Rebecca Rhodin, Rakel Eklund, Anneli Silvén Hagström, Rolf Gjestad, Atle Dyregrov, Josefin Sveen; 7/26Adolescents who experience the loss of a family member are at increased risk of adverse mental health outcomes, yet many face barriers or may be reluctant to access in-person or group-based support. This study evaluated the short- and long-term mental health effects of Alba - Youth in Grief, a preventive self-management mobile app for bereaved adolescents. Intention-to-treat analyses showed moderate reductions in prolonged grief symptoms at 12 months among adolescents randomized to Alba compared with the control group, with no significant effects at the 2- and 6-month follow-ups. The app group also demonstrated greater reductions in grief reactions, posttraumatic stress symptoms, and depressive symptoms compared with controls, with the strongest effects observed at long-term follow-up.

[Portugal] Ketamine for cancer-related pain in palliative care: A systematic review of clinical use and safetyJournal of Pain & Palliative Care Pharmacotherapy; by Catarina Vitorino-Afonso, Paulo Reis-Pina; 7/26Ketamine has emerged as an adjuvant for opioid-refractory cancer-related pain in palliative care, but evidence remains limited. [This study found that] ketamine was used mainly as an adjuvant. Many reports described reduced pain and/or lower opioid use, although certainty was very low and attribution was limited by polypharmacy and regimen changes. Intravenous infusions were most common, but subcutaneous, oral, and intranasal routes were also used. Intranasal ketamine showed pragmatic utility for breakthrough pain, while oral ketamine was described in ambulatory palliative care settings.

Where hospice fails us: A qualitative study of facilitators and barriers in transitions to hospice according to palliative care cliniciansJournal of Palliative Medicine; by Morgan M Nakatani, Julia G Cohn, Kris W Herring, Thomas W LeBlanc; 7/26Transitions to hospice are challenging for patients, caregivers, and health care teams, yet few studies have examined gaps in care from the perspectives of referring palliative care (PC) clinicians. PC clinicians identify substantial barriers to hospice transitions, underscoring the need to improve access to comprehensive end-of-life care. Clinicians emphasized the value of hospice and the Medicare benefit, while identifying barriers to hospice transitions [including] ... inadequate caregiving support, limited reimbursement, uncertainty around eligibility and prognostication, and differences between for-profit and non-profit hospice agencies. These barriers contributed to inequitable access to hospice and gaps in care.

Deactivation of cardiac devices at the end of life: clinical and ethical challenges Current Heart Failure Reports; by Marie-Gabrielle Courtès, Fiona Ecarnot, Mathilde Giffard; 8/13/26 Device deactivation in patients with heart failure is an increasingly relevant clinical and ethical challenge as the use of cardiovascular implantable electronic devices expands. ... Deactivating implantable cardioverter defibrillators can prevent painful and unnecessary shocks at the end of life, which may otherwise prolong dying without improving quality of life. Multidisciplinary involvement, including palliative care consultation, is essential to support patient-centered decision-making and symptom management. This review synthesizes the latest evidence and consensus on device deactivation in heart failure, emphasizing the need for communication, initiated early in the disease course, as well as individualized care, and integration of patient preferences throughout the disease trajectory.Editor's Note: What Policies and Procedures does your organization have in place? What interdisciplinary education do you ensure for all IDG members regarding this challenge for patients, families, and legal representatives? This clinical and ethical challenges presents potentially horrific trauma for the patient and those present when the person is actively dying and dies. Clincial and legal knowledge, preparations, and communications, and documentation are crucial.

Spiritual aspects of palliative and end-of-life care: highlights - compiled by by Barry R. Ashpole ehospice; by The International Association for Hospice & Palliative Care; 8/10/26 The International Association for Hospice & Palliative Care's literature search is intended as an advocacy, research, and teaching resource for colleagues who have a special interest in palliative and end-of-life care. Its goal is to keep its readers abreast of “current thinking” and also of emerging or related issues. ... The current posting focusses on the spiritual aspects of palliative and end-of-life care.

"Ask us anything": A framework for understanding bereaved children's questions about illness, dying, and griefPalliative Care & Social Practice; by Ceilidh Eaton Russell, Liana Bailey, Ashwini Pugazhendhi, Karleigh Sutton, Sandra Twiner Ross, Joanna Humphreys; 7/26Grieving children may wonder about questions of illness, dying, and death as they navigate the death of, or grief for, someone who matters to them. Parents and caregivers, as well as health and psychosocial clinicians frequently report feeling uncertain and unprepared to engage in these conversations even if they are aware of their helpfulness. Interested in examining the questions bereaved children wonder about, this study analyzed 710 anonymous questions submitted by children aged 5-17 during Ask Us Anything sessions at a bereavement camp in Ontario, Canada between 2009 and 2024. Question focuses (i.e., what it says about the core topic) spanned across: Body, Condition, Dying and Death, Grief, while question functions (i.e., what it says about what the person seeks to understand about the topic) spanned: How it Works, Catch, Cause, Cure, Care, Connect. Children's questions can be helpful windows into what their grief experiences are like and what their emotional, existential, and/or informational needs are within this experience.

Aging and end-of-life care planning among transgender and nonbinary individuals: A systematic reviewLGBT Health; by Ginger H Kwak, G Nic Rider, Emily A Paine, Walter O Bockting, Steven A John; 7/26The objective of this review was to identify perceptions of end-of-life (EOL) care needs among transgender and nonbinary (TNB) individuals. We identified five major themes during thematic analysis: fear of discrimination in long-term care facilities, fear of loss of independence, maintaining social circles with aging, obstacles to EOL logistics, and what defines successful aging. Additional subthemes included fear about loss of identity, preference for euthanasia versus loss of identity, participation in EOL planning, and advance care plan/will completion. Psychosocial aspects were the most substantial barriers to successful EOL planning.