Dyspnea is a common and distressing symptom in children living with serious illnesses, particularly near the end of life, and requires thoughtful, family-centered assessment and management. A stepwise nursing approach to pediatric dyspnea is explored, which includes clinical assessment, identification of potentially reversible causes, and shared decision-making grounded in the child's symptoms, goals of care, and family context. Using a case study of a child with metastatic osteosarcoma, practical strategies are highlighted for symptom management, including nonpharmacologic interventions, communication, anticipatory guidance, and pharmacologic treatment. It is paramount to balance evidence-based practice with value-based care to reduce suffering, support function and comfort, and respond adaptively to changing needs across the illness trajectory.
Approximately 70% of aged care residents are transferred to a hospital during the last few months of life. Many factors contribute to hospital transfer at the end-of-life; however, little is known about the role of advance care planning on hospital transfer decision-making. A scoping review using Arksey and O'Malley's framework and the Joanna Briggs Institute Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Reviews was conducted to reveal the available research on hospital transfers of aged care residents at the end-of-life and the role of advance care planning. Seven databases were searched. One hundred and ninety-seven potential papers were identified from screening. After applying the population concept context inclusion and exclusion criteria, 23 research papers were identified; most were quantitative (n = 15), n = 7 were qualitative, and 1 was mixed methods. Studies were from 9 different countries and published between 2004 and 2024. Advance care plans or advance care directives that included instructions to not resuscitate or not hospitalize resulted in fewer hospital transfers than those that did not. Reasons for hospital transfer were classified as age, acuity, vulnerability, and family-related. Of concern were reports of hospital transfers against resident's wishes as documented on advance care plans and advance care directives.
People with multiple sclerosis (PwMS) face an uncertain future as the nature of the disease can be progressive and unpredictable, leading to chronic serious symptomatology impacting quality of life. Serious illness discussions and symptom management should be part of routine care in all outpatient neurology clinics. Yet few standard clinical approaches to palliative care exist for this population. Providers frequently lack understanding about when to incorporate specialist palliative care. The MS-Support project established a specialized nurse practitioner (NP)-led palliative care clinic embedded in an MS center. A feasibility project evaluated clinician perceptions and referral patterns, as well as the impact on symptom identification and advance care planning/serious illness discussions. Twenty-six patients were referred over 3 months, 77% were seen once; 29% were seen more than twice. The average number of symptoms identified per patient increased from 1.8 to 6.7 postintervention. Seventeen (85%) had serious illness discussions documented compared with zero preintervention. NP productivity increased by 67%. Results indicate that NP provision of embedded palliative care can increase acceptance of palliative care, increase the frequency of serious illness discussions, and improve identification of multidimensional symptoms in patients with progressive MS. An NP-embedded clinic can improve palliative care provided to this vulnerable population.
Advanced practice registered nurses (APRN) who practice as solo hospitalists in critical access hospitals are often underrecognized in their role in providing palliative and end-of-life care. Palliative and hospice care specialty services are often not readily available for consultations in a timely manner, especially in highly remote areas of the country. These hospitalists routinely work without an option for palliative care consultations, ethics committees, or structured advance care planning processes. These hospitalists must simultaneously manage admissions, discharges, inpatient deteriorations, psychosocial situations with patients and families, and then carve out time to have empathic and meaningful end-of-life conversations. As a result, APRNs must independently deliver time-sensitive conversations, including goals of care discussions, health care agents’ discussions, and end-of-life planning, in the hospital amid constant interruption, competing clinical priorities, and resource constraints. This article describes the full scope of the solo APRN hospitalist in a critical access hospital setting with close attention to how complex patient demands contribute to the challenges in providing high-quality end-of-life communications. This article examines clinical, educational, and ethical dimensions of this work, and presents a case example that illustrates how these pressures present during a shift. Strategies to strengthen rural palliative care capacity are discussed, including tele-palliative care, remote ethics support, and APRN-centered education. As rural workforce shortages persist and continue to rise, alongside rising patient acuity, naming and addressing these structural gaps is essential in improving quality of care and protecting the well-being of a solo APRN hospitalist.
Heart failure patients often arrive at hospice with advanced symptoms, variable care plans, and limited coordination across settings. To address this, Samaritan Healthcare and Hospice pursued the American Heart Association Palliative/Hospice-Heart Failure Certification. The initiative required a full system redesign focused on standardizing education, documentation, care coordination, and performance measurements. This article outlines the challenges encountered, including low compliance rates and documentation barriers, and describes the process used to achieve certification in October 2025. Key strategies included forming an interprofessional Advanced Illness Management Committee, implementing new triage and clinical tools, launching performance improvement plans, and fostering a culture of collaborative learning. The resulting care model now serves as a framework for additional serious illness pathways and offers a replicable approach for hospice and palliative care programs seeking to strengthen cardiac care delivery.
Spiritual distress is a significant yet frequently underrecognized component of serious illness and palliative care. Although spirituality is recognized as a core domain of quality palliative care, patients often express spiritual suffering through grief, mistrust, anger, identity, trauma, or existential concerns rather than explicitly religious language. This article explores the role of spiritual assessment and open-ended inquiry in recognizing spiritual distress through the case of an 86-year-old Black male with metastatic prostate cancer who repeatedly refused to answer standardized questions regarding spiritual distress. Although he identified as agnostic, broader conversations revealed profound sources of meaning, suffering, dignity, and peace shaped by experiences of racism, institutional mistrust, family, music, and legacy. The case illustrates how spiritual distress may emerge indirectly and highlights the limitations of relying solely on structured screening tools. Common spiritual assessment frameworks are reviewed, along with the importance of therapeutic presence, compassionate curiosity, and culturally responsive communication. Nurses and advanced practice registered nurses are uniquely positioned to recognize subtle manifestations of spiritual suffering and facilitate whole-person care through open-ended, trauma-informed approaches to spiritual assessment.
Undergraduate nursing students struggle with understanding pharmacological pain management, especially in palliative care. New nurses indicate needing more experience with pain management and ethical dilemmas surrounding pain management. Despite increased focus on palliative care, nurses struggle when they enter the workforce. Historically, skills acquisition occurs during orientation; however, increased patients presenting with complex conditions require more support than orientation permits. Misconceptions in practice roles challenge new nurses in feeling comfortable delivering quality palliative care. This project aimed to develop real-life case scenarios aligned with palliative competencies for use in undergraduate courses. Literature was reviewed for current information, guiding the development of case studies set in 4 different care locations-long-term care, community, medical-surgical, and emergency department. Cases were mapped to align with palliative competencies and the essentials; this ensures ease of implementation over coursework, promoting confidence and competence in palliative interventions. Traditionally, palliative and hospice content is delivered with community courses, possibly limiting student competency across settings. These case studies present an opportunity for formative student assessment in pharmacological and other palliative management over 4 settings. Facilitation requires reflective techniques, and nurse faculty may need support in guiding discussions. Future research on the implementation of the case studies is warranted.
Preregistration nursing students may witness neonatal resuscitation during clinical placements, exposing them to high-intensity, life-and-death situations with potential emotional impact. The study aimed to describe the lived experiences of preregistration nursing students witnessing neonatal cardiopulmonary resuscitation in real clinical settings. A descriptive phenomenological study using a Husserlian approach was conducted in tertiary neonatal units in Indonesia. Twenty students were purposively sampled. Data were collected through semi-structured interviews and analyzed using Colaizzi's method. The results of the study revealed 5 themes with 10 subthemes: (1) overwhelmed during neonatal resuscitation; (2) role uncertainty in neonatal resuscitation; (3) lingering emotional burden after resuscitation; (4) rebuilding coping and professional readiness through support; and (5) insufficient institutional support and stigma affecting help-seeking. Students experienced a profound gap between simulation and real-life exposure, marked by sensory overload, role ambiguity, and enduring emotional responses. Witnessing neonatal resuscitation represents an early confrontation with life-and-death care, generating emotional and moral challenges. Structured preparation, defined student roles, and systematic debriefing are essential to support students' psychological well-being and professional development.
Access to high-quality palliative care remains a challenge across global settings. This brief report describes Respiro, a global learning and community engagement initiative designed to promote cross-cultural exchange in palliative care. In 2023-2024, a bilingual US hospice nurse traveled to Mexico to collaborate with the End-of-Life Nursing Education Consortium-México, and then hosted the Mexican team for a weeklong visit in the southeastern United States in 2025. In this brief report, global learning and community engagement are described as conceptual frameworks for Respiro. Data on participant insights and reflections were drawn from structured evaluations completed by the End-Of-Life Nursing Education Consortium-México team, local palliative care providers, and Latino community members. Salient topics included self-care, volunteerism, and sociopolitical factors. Challenges to optimal palliative care in the Global North and Global South illuminate how diverse cultural contexts affect all involved in palliative care. Recommendations are provided for integrating global learning and community engagement into international palliative care development.
Miscarriages and intrauterine fetal demises may have a negative impact on bereaved parents, with reports of grief, guilt, and a sense of isolation. Utilizing Bowlby's Caregiving Theory as a framework, this study examined the impact of time spent with the baby on the patient's lived perinatal loss experience, a phenomenon with limited investigation. Using a descriptive phenomenological approach, data were gathered retrospectively through interviews with mothers from 2 inpatient facilities at 3 and 6 weeks postpartum. Four major themes were identified: a sense of hopefulness, lack of support (follow-up care) from nursing/health care providers, importance of time with baby, and the need as parents to protect, nurture, and socialize (honor) their baby. Five additional minor themes identified and unique to individual facilities included a perceived lack of anticipatory guidance, need for communication in the moment, importance of mementoes, personhood related to baby, and the perception of abandoning baby at the time of discharge. All but one of the participants spoke about the significance of time with their baby. Most parents have the need to parent even in death, and health care professionals greatly impact whether mothers are given the opportunity to parent while in the hospital.
Pruritus, fever, and sweats are frequently observed thermoregulatory symptoms among patients with advanced chronic illnesses, especially during the terminal phase. These symptoms can substantially affect patient comfort and may contribute to fatigue, delirium, sleep disturbances, and lead to increased caregiver burden. Nurses play a crucial role in distinguishing between reversible and irreversible causes of pruritus, fever, and sweats. They are essential in implementing evidence-based interventions focused on patient comfort that align with the goals of care for both patients and families. This article presents a thorough, evidence-based review of the assessment and management of pruritus, fever, and sweats at the end of life.
The aim of this study was to deeply examine the experiences of proxy grief among nurses providing pediatric palliative care. This qualitative phenomenological study was conducted with 16 nurses working in the pediatric ward of a hospital located in the northern region of the country. Data were analyzed using Colaizzi's phenomenological analysis method. The analysis revealed 3 themes (challenges experienced while caring for children in palliative care; secondary trauma and coping processes; proxy trauma and professional resilience) and 9 sub-themes (emotional strain during care, establishing an empathetic bond, emotional exhaustion, traumatic experiences, seeking psychological support, religious coping methods, developing a professional approach, resilience and acceptance, and motivation to continue in the profession). The study found that nurses providing pediatric palliative care experienced significant psychosocial stress. Pediatric nurses were particularly challenged emotionally when caring for palliative patients. In this context, it is important to develop stress-coping skills to help nurses manage vicarious trauma. Strengthening nurses psychologically and spiritually will positively impact their professional lives, which in turn will enhance the quality of care they provide.
Neurocritical intensive care unit (ICU) patients are not routinely screened for palliative care (PC) consultations. Unmet PC needs can delay establishing goals of care, increase the length of stay, and decrease patient and family satisfaction. Nurses can best advocate for appropriate PC referrals when given adequate resources and tools. Nurse-driven screening results in more appropriate PC recommendations. The project was a descriptive pre/post evidence-based practice intervention design. An electronic survey on comfort and knowledge of PC was distributed to neurocritical ICU nurses before and after an educational intervention regarding the definition of PC and the use of the Center to Advance PC's ICU screening tool. Nurses' comfort when assessing for PC consults increased from 62.5% to 91.7%, and for requesting consults from a physician, from 58.4% to 75%. Nurses' knowledge of PC being compatible with aggressive treatment increased from 41.7% to 95.8%. Nurses recommended PC in 66.7% of patients based on 3 or more screening criteria selected. The screening tool highlighted that more than 62% of patients in the neurocritical ICU had a PC need on admission. Implementing a screening tool and educational intervention can increase nurses' comfort and knowledge in recommending PC consults. The screening tool effectively identified patients with PC needs, empowering nurses to advocate for appropriate PC referrals.
Shared decision-making is essential in managing chronic kidney disease, yet little is known about how patient-caregiver dyads develop these skills through structured interventions. This study aimed to characterize how patients with chronic kidney disease and their family caregivers' decision-making behaviors evolve when participating in a decision-skill-building intervention (Improving the Decisional Partnership). This qualitative descriptive secondary data analysis analyzed postintervention interview transcripts and coach follow-up notes from a parent study (November 2022-May 2023) using thematic analysis. The analysis revealed 2 themes demonstrating how patients' and caregivers' decision-making behaviors evolve when engaging in a decision-making intervention: (1) Facilitators of decision-making behaviors, and (2) The impact of decision-support training on decision-making. The first theme included 2 subthemes: (1a) disease stability, and (1b) relationships. The second theme included 2 subthemes: (2a) knowledge acquisition as a driver of decision-making behavior, and (2b) communication skills training as a catalyst for engaging in decision-making behaviors. Findings suggest that patient-caregiver dyad decision-making behaviors towards advance care planning can be shaped through exposure to knowledge and skills, fostering proactive information-seeking, and improved communication during clinical encounters.
Dyspnea is a prevalent and distressing symptom at the end of life (EOL), affecting up to 90% of dying patients and causing significant suffering for patients and families. Morphine sulfate remains the standard pharmacological treatment for refractory EOL dyspnea, effectively modulating central respiratory drive and alleviating breathlessness perception, distinct from its use in chronic stable breathlessness, where recent evidence shows limited benefit and potential harms. Many nurses, however, lack adequate knowledge and confidence in administering morphine appropriately due to misconceptions about addiction, respiratory depression, and hastening death. This quasi-experimental study evaluated a brief online training module on morphine administration for EOL dyspnea among registered nurses. Of 69 enrollees, 34 provided complete pre- and post-intervention data. Paired t tests revealed significant improvements in knowledge and self-efficacy. These findings highlight the value of targeted, scalable education in addressing knowledge gaps, enhancing nurse confidence, and supporting evidence-based EOL symptom management.
