The American journal of hospice & palliative care最新文献

Background: The cost of caring for patients and their families in the midst of interconnected resource, ethical, moral, legal and practical considerations compromises a physician's emotional and physical well-being and therefore patient care. Whilst the cost of caring is historically best associated with compassion fatigue, data has suggested that this may extend to other related concepts, such as vicarious trauma, secondary traumatic stress and burnout. In particular, palliative care physicians are especially vulnerable as they witness and encounter more cases of death and dying. Methods: This study aims to provide a more clinically relevant notion of the cost of caring amongst palliative care physicians in Malaysia. 11 physicians underwent semi-structured interviews as part of the Systematic Evidence-Based Approach (SEBA) for prospective studies. Results: Analysis of the interview transcripts revealed the following domains: (1) conceiving the costs of caring; (2) risk factors; and (3) support mechanisms. Conclusion: This SEBA-guided study into the cost of caring amongst Malaysian palliative care physicians suggests that the costs of caring extend beyond encapsulating moral distress, compassion fatigue, vicarious trauma, secondary traumatic stress and burnout. Rather, the data suggests a personalized notion that varies with individual and contextual factors which are in flux and change over time. A longitudinal, personalized and holistic mentoring program is therefore proposed to counter this cost.

Background: Patients with primary brain tumors navigate a distinct illness trajectory, characterized by an uncertain prognosis, a rapid decline in physical functioning, and a significant deterioration in the quality of life. These unique challenges underscore the importance of our research in understanding and addressing the needs of these patients. Methods: The EORTC QLQ C30 & EORTC BN 20 questionnaires assessed the quality of life and symptom burden in patients with primary brain tumors. The scores were analyzed using SPSS statistical software. Results: 100 patients - 61 males and 39 females-were included with radiological or histopathological diagnoses of primary brain tumours. Seizures (38%) was the most common presenting symptom, followed by headache (18%), loss of consciousness (13%), focal neurological deficit (9%), and blurring of vision (8%). The mean quality of life at baseline was 78.29, with a standard deviation of 9.67 on a scale of 0 to 100, and the brain tumor-specific symptom burden score was 46.9, with a standard deviation of 17.95 on a scale of 0 to 100. There was a significant difference in the global health status score between the first and third visits at 3 months (P value = .03). Conclusion: Despite the aggressive and often incurable nature of primary brain tumors, there is hope in the form of palliative care. By addressing unmet symptoms, uncertainties about the future, and social functioning, palliative care can significantly improve the quality of life of these patients.

BackgroundNausea and vomiting significantly impact the quality of life in palliative care. Due to various underlying causes, treatment approaches vary. However, scientific evidence on pharmacotherapeutic management is limited, complicating treatment decisions. Objective is to assess the current antiemetic treatment approach in palliative care in Germany.MethodsA retrospective observational study (15 months) was conducted, evaluating clinical records of adult patients admitted to palliative care in a German hospital. Symptom burden (Integrated Palliative care Outcome Scale (IPOS®)), suspected aetiology, antiemetics, treatment quality and drug-related problems (DRPs) were evaluated.ResultsWe included 330 patients (median age 71 years, 50.9% female), of which 172 (52%) experienced nausea/vomiting in 230 treatment episodes. Symptoms were more prevalent in cancer-patients (P = 0.002) and women (P = 0.002). Main aetiologies were intestinal obstruction (59/230, 25.7%), hypomotility (31/230, 16.1%), and raised intracranial pressure (23/230, 10.0%). Nearly 70% experienced a reduction of symptom burden within the first 3 days, with faster symptom relief and shorter episodes in cancer patients compared to non-cancer patients (median length 3d vs 2d). DRPs were documented in 213/230 episodes (92.6%), indicating high interaction potential of antiemetics (87.4%). Manifest DRPs affected patients due to ineffective treatment (29.0%) or side effects (6.5%).ConclusionsOne-third experienced inadequate symptom control with the current treatment, underscoring the complexity of managing nausea/vomiting in palliative care and the need for a systematic approach. This study emphasizes the importance of evidence-based guidelines and further research into underutilized antiemetics, along with improved medical education in an interdisciplinary team to enhance treatment quality.

Pediatric neuro-oncology patients have one of the highest mortality rates among all children with cancer. Our study examines the potential relationship between palliative care consultation and intensity of in-hospital care and determines if racial and ethnic differences are associated with palliative care consultations during their terminal admission. Retrospective observational study using the Pediatric Health Information System (PHIS) database with data from U.S. children's hospitals. PHIS was queried for patients under 18 years of age who received a diagnosis of brain tumor and had their terminal admission between January 1, 2017 and December 31, 2021. Of the 567 patients who fit the inclusion criteria, 359 (63%) patients had an inpatient palliative care consultation during their terminal hospital stay. There were no statistically significant differences seen when comparing palliative care consultation rates among racial groups. When comparing the ethnicity variables, patients in the Hispanic group had approximately a 10% higher rate of palliative care consultations than their non-Hispanic counterpart. Patients with palliative care consultations had a lower percentage of PICU admission (64.9 vs 83.2), mechanical ventilation (51.0 vs 76.0), and TPN use (18.1 vs 25.5) despite having similar lengths of stay. Pediatric neuro-oncology patients who received a palliative care consultation during their terminal hospital stay had lower intensity care (lower rates PICU admission, mechanical ventilation use, and TPN use) despite having similar lengths of stay. This may reflect the enhanced decision-making support for the patients and their families so that they may consider all options. Children facing a terminal illness and their families deserve access to optimal supportive services. This study highlights the importance of integrating palliative care in hospital admissions of terminally ill children with neuro-oncological diagnoses.

Background: Spiritual care is a critical component of hospice and palliative medicine; however, physicians frequently lack the necessary competencies to adequately address patients' spiritual needs. This study aims to examine the spiritual care competencies of physicians as reflected in their care notes, thereby providing insights into their approaches for managing spiritual distress. Methods: A narrative inquiry approach was employed to qualitatively analyze interaction notes from 30 palliative care patients experiencing spiritual distress. Data were collected from a medical university professor's care notes between April 2019 and February 2024. Results: The most common form of spiritual distress observed was reluctance to leave life, followed by loss of dignity. Physicians demonstrated expertise in holistic care, addressing physical, psychological, and spiritual needs with a comprehensive approach. Their demeanor reflects acceptance of mortality and acknowledgment of the limitations of medical care, helping foster gratitude and contentment in patients. Effective communication was pivotal, involving the conveyance of information, empathetic engagement, and active listening. Compassionate interactions emphasized the importance of spiritual care in patient-centered care delivery. Conclusions: Spiritual care competencies are essential for improving patient outcomes and advancing comprehensive palliative care. Future efforts should integrate these competencies into communication training within medical education to more effectively enhance health care providers' competencies.

The aging prison population in the United States presents urgent challenges for providing appropriate end-of-life (EOL) care. Currently, there are two primary approaches to deliver this in a compassionate manner: medical release programs (MRPs) and prison-based end-of-life care programs (EOLCPs). Using New York State as a case study, we argue expanded MRPs represent the most ethical path forward, while acknowledging the continuing need for prison-based EOLCPs. Our analysis reveals significant barriers to accessing medical release, including lack of knowledge about the application processes, procedural inefficiencies, overreliance on prognostication, and social stigma. While prison-based programs offer some benefits, studies indicate they frequently fall short of community standards for EOL care, particularly regarding family involvement, pain management, and environment, including a shortage of beds and equipment. We argue for expanding MRPs based on three key considerations: (1) documented preferences of incarcerated individuals against dying in prison, (2) low recidivism rates among medically released individuals, (3) concerning variations in prison-based EOLCP implementation and oversight that likely leads to inconsistent care. While maintaining prison-based EOLCPs remains necessary for incarcerated people ineligible for medical release or those who prefer to remain in facility care, expanding MRPs may better protect patient autonomy and dignity. We recommend three policy changes: (1) training and requiring correctional staff to identify potential eligible individuals for medical release, (2) training community medical professionals on state medical release policies to facilitate applications during community care episodes, and (3) establishing independent physician panels for medical evaluations to expedite evaluations and reduce potential bias.

BackgroundThe death of a spouse due to cancer is highly distressing. While most adapt, a significant minority may develop Prolonged Grief Disorder (PGD) or experience Post-Traumatic Growth (PTG). Palliative sedation, particularly Continuous Deep Sedation Until Death (CDSUD), is used to alleviate refractory suffering, yet its psychological impact on bereaved spouses remains unclear.AimsThis study examined whether exposure to CDSUD and alignment between end-of-life care and patient preferences influenced grief and PTG in bereaved spouses.MethodsA cross-sectional analysis was conducted using data from the AFTERSEDATIO project. Twenty-eight bereaved spouses (mean age = 64; 57% women) of cancer patients who received palliative care in French hospitals completed self-report questionnaires 3 months post-loss (T0). Measures included the Traumatic Grief Inventory-Self Report, General Health Questionnaire, and Post-Traumatic Growth Inventory. Analyses included t-tests, Wilcoxon, and chi-square tests; the significance threshold was set at α = .10.ResultsNo significant differences in grief, mental health, or PTG were observed between spouses whose partners received CDSUD (n = 21) and those who did not (n = 7). However, higher grief and distress were reported when patients had not explicitly requested sedation. Greater PTG-especially in personal strength, spirituality, and new possibilities-was associated with the absence of a stated wish to avoid suffering.ConclusionsWhile CDSUD itself did not significantly affect bereavement outcomes, the findings suggest that spouses' perceptions of alignment between the patient's end-of-life wishes and the care received may influence their adjustment to loss, underscoring the importance of clear communication and shared decision-making in palliative care.

BackgroundsOral complications, including candidiasis, commonly impact palliative care patients, significantly diminishing their quality of life. Early detection by palliative care teams is paramount, however, research on multidisciplinary interventions in this setting is limited.ObjectivesTo examine the effect of dental hygienist's ward rounds and the characteristics of patients with oral candidiasis to establish a strategy for early detection.DesignRetrospective Observational Study.Setting/SubjectsWe conducted a survey of patients admitted to the palliative-care unit of the National Hospital Organization Chiba Medical Center in Japan between April 1, 2019, and March 31, 2022. Patients with a hospital stay ≤7 days were excluded.MeasurementsData including age, sex, history, renal function test values, and prescribed medications were collected from the electronic medical record system.ResultsA total of 594 patients were included. They were divided into 2 groups based on whether they were admitted before or after the start of the ward rounds. In the pre-intervention group, 3 patients (1.05%) had oral candidiasis, whereas 20 patients (6.5%) had oral candidiasis in the post-intervention group. Furthermore, a multivariate analysis identified long-term systemic steroid use, multiple-route steroid administration, number of steroid components, and a primary cancer site above the diaphragm as factors significantly associated with the development of oral candidiasis.ConclusionThe participation of dental hygienists in palliative-care units is advantageous for the early detection of oral candidiasis. Complex histories of steroid administration and a cancer site contiguous with the oral cavity should be noted as high-risk factors in palliative-care units.

Military service demands sacrifice, but no professional challenge prepared me for the deeply personal experience of caring for my father at the end of his life. As an Air Force nurse, I have tended to patients in complex clinical settings, yet becoming both nurse and daughter to my terminally ill father revealed a deeper dimension of caregiving. My father suffered from multiple chronic conditions and declined rapidly after a below-the-knee amputation in 2024. When I returned home on leave, it was clear he was dying. I admitted him to hospice and remained by his side for 40 days, providing total care-bathing, feeding, grooming, and advocating for him-while rediscovering the tenderness of our bond. Through consistent, compassionate caregiving, my father regained strength, dignity, and quality of life. He began eating again, became responsive, and eventually reengaged with his nursing home community. Against expectations, he lived 16 more months filled with joy, connection, and restored purpose. This experience transformed my understanding of nursing by revealing the profound impact of presence, love, and dignity-centered care. Caring for my father illuminated the intersection of professional skill and personal devotion, demonstrating that the heart of nursing extends beyond clinical interventions. It resides in honoring the whole person and offering unwavering compassion in their most vulnerable moments. This narrative reflects on the emotional, ethical, and spiritual lessons learned as I walked my father through his final chapter-an unexpected gift and the greatest honor of my nursing career.

Prognostic machine learning models can help identify patients in need of advance care planning (ACP) conversations. However, additional work is needed to understand which factors guide physicians' comfort with and prioritization of ACP conversations, even after such nudges. In this exploratory secondary analysis of a cluster randomized trial, we examine the relationship between characteristics of internal medicine physicians (eg, training background and practice patterns) and likelihood of ACP conversation following notification by a mortality risk prediction machine learning model.