Palliative Care Practice Research Articles

Benchmarking palliative care practices in neurooncology: a german perspective

PurposeTo benchmark palliative care practices in neurooncology centers across Germany, evaluating the variability in palliative care integration, timing, and involvement in tumor board discussions. This study aims to identify gaps in care and contribute to the discourse on optimal palliative care strategies.MethodsA survey targeting both German Cancer Society-certified and non-certified university neurooncology centers was conducted to explore palliative care frameworks and practices for neurooncological patients. The survey included questions on palliative care department availability, involvement in tumor boards, timing of palliative care integration, and use of standardized screening tools for assessing palliative burden and psycho-oncological distress.ResultsOf 57 centers contacted, 46 responded (81% response rate). Results indicate a dedicated palliative care department in 76.1% of centers, with palliative specialists participating in tumor board discussions at 34.8% of centers. Variability was noted in the initiation of palliative care, with early integration at the diagnosis stage in only 30.4% of centers. The survey highlighted a significant lack of standardized spiritual care assessments and minimal use of advanced care planning. Discrepancies were observed in the documentation and treatment of palliative care symptoms and social complaints, underscoring the need for comprehensive care approaches.ConclusionThe study highlights a diverse landscape of palliative care provision within German neurooncology centers, underscoring the need for more standardized practices and early integration of palliative care. It suggests the necessity for standardized protocols and guidelines to enhance palliative care's quality and uniformity, ultimately improving patient-centered care in neurooncology.

A path to recovery for overlooked populations and their unique challenges: integrating rehabilitation in palliative care for patients with substance use disorders.

Palliative care is a growing medical specialty focusing on providing compassionate and holistic management for those facing life-threatening diseases. These patients frequently present with physical, functional, emotional, and psychosocial problems that require comprehensive interdisciplinary management. However, there is a substantial opportunity to improve care for patients in palliative care who also have a substance use disorder (SUD). These opportunities include direct provision of SUD treatments by specialist palliative care providers and the integration of physical medicine and rehabilitation services. The purpose of this article is to examine the misunderstood and underutilized interaction between palliative care and SUDs, as well as describing the unique opportunities provided by physical medicine and rehabilitation providers to achieve a patient's palliative care goals and optimize overall quality of life. Substance Use Disorder is a chronic, often relapsing, illness that is relevant to palliative care practice due to the potential for significant morbidity and mortality through organ failure, chronic infections, and overdose syndromes. In traditional palliative care practice, it has been observed that past or current SUD diagnoses are often left untreated, resulting in increased distress, and exacerbating an already complex medical situation. Furthermore, many of these patients also experience physical, functional, or psychosocial changes that, when left untreated, will worsen distress and quality of life. To provide more comprehensive and successful palliative care for patients with SUD, the authors recommend an increased emphasis on specialist palliative care training in SUD management, proactive integration of rehabilitation services into the palliative care team, and consistent advocacy for these steps in various arenas. Combined, these actions can improve the care team's ability to provide a holistic, patient-centered approach that can have substantial positive outcomes for patients, health systems, and society.

Analysis of the First Year of a Non Oncologic Outpatient Palliative Care Practice

Analysis of the First Year of a Non Oncologic Outpatient Palliative Care Practice

Validation of Modified Objective Prognostic Score in Patients with Advanced Cancer in Taiwan.

Modified versions of the Objective Prognostic Score (mOPS) needs to be validated to reflect practical palliative care circumstances in Taiwan. We compared the abilities of an mOPS score of 1.5 or higher versus a Karnofsky Performance Status (KPS) score of 30 or lower to predict 2-week mortality in patients with advanced cancer in Taiwan. Observational study. We performed a secondary analysis of an international multicenter cohort study of patients in East Asia. Participants were inpatients with advanced cancer in palliative care units (PCUs) in Taiwan. We compared the mOPS-B model, which does not require laboratory tests, with the KPS in a 2-week survival timeframe. We compared the accuracy of the prognostic models using sensitivity, specificity, and area under the receiver operating characteristic curve (AUROC). Calibration plots and net reclassification indices (NRI) for 2-week survival were compared between the two models. Differences in survival between the higher- and lower-scoring groups of each model were identified using the log-rank test. We included 317 patients, with a median survival of 14.0 days. The mOPS-B had a high sensitivity (0.82) and high AUROC value (0.69). By contrast, the KPS demonstrated good sensitivity (0.77) and an acceptable AUROC value (0.65) for predicting 2-week survival. The calibration plot did not demonstrate satisfactory agreement between the actual and predicted survival times in either the mOPS-B or the KPS groups. Our NRI was positive (absolute value: 22%), indicating that mOPS-B predicted 2-week survival better than KPS. The mOPS-B may serve better than the KPS as a screening tool for admission to PCUs in Taiwan because it was more accurate at predicting 2-week survival.

Standard of practice in palliative care for pharmacy services

Standard of practice in palliative care for pharmacy services

Primary and specialty palliative care utilization at a regional Burn center.

There is little research informing appropriate specialty palliative care consultation over primary palliative care practice, or the ability of the burn surgeon to perform skills such as effective goals of care discussions. We sought to characterize patterns of palliative care utilization and hypothesized that greater modified Baux (mBaux) and systemic organ failure assessment (SOFA) scores would correlate with increased specialty palliative involvement but have no relationship with primary palliative involvement. A retrospective chart review was conducted at a regional burn center between 2020-2021 including patients admitted with burns or inhalation injury and a mBaux score over 60, detailing circumstances of palliative consultation and goals of care discussions. 163 patients met criteria. Odds of specialty palliative consultation increased by 3.9% for each additional mBaux score point and 23.3% for every SOFA score point. The odds of a goals of care discussion by a burn surgeon increased by 3.5% for each mBaux score point and 23.9% for each SOFA score point. Those receiving palliative consultation tended to have greater burn surface area, graft complications, code status changes, and more goals of care discussions by any provider at admission; there was no difference in symptom control or hospital length of stay. Higher mBaux and SOFA scores correlate with increased odds of both specialty and primary palliative involvement in our cohort. There is bias in diverting both primary and specialty palliative care resources toward acutely ill patients and those with less immediate projected mortality may need additional attention.

Palliative care in the emergency department: An observational study of doctors in KwaZulu-Natal.

The World Health Organization advocates the early, appropriate provision of palliative care (PC) to patients throughout the life course. Patient consultations to the emergency department (ED) have been recognised as opportunities to initiate or optimise their PC needs. This study aimed to assess the knowledge of and attitudes towards PC among doctors at emergency physician staffed EDs in KwaZulu-Natal, South Africa. A cross-sectional survey was conducted between November 2021 and February 2022 for doctors employed out at emergency physician staffed EDs in KwaZulu-Natal, South Africa, using the validated Palliative Care Attitude and Knowledge questionnaire. The variables assessed were the self-rated and basic knowledge and attitudes towards core domains of PC. Ordinal data were compared using thet-test or ANOVA as appropriate, using MedCalc® Statistical Software version 22.009. Of the 39 participants, the scores for the knowledge questions showed that 15.3% participants had good knowledge, 53.8% had fair knowledge and 30.7% had poor knowledge. Participants had either favourable (58.8%) or an uncertain (41.0%) attitude towards PC. No correlation was seen between the knowledge and attitudes scores (Spearman's rho = 0.13, 95% CI -0.19 to 0.43,p= 0.43). There appears to be a deficit in knowledge of PC among doctors in the ED and a need for in-service training in PC for emergency care physicians.Contribution:This study provides new knowledge around PC practices at EDs in KwaZulu-Natal, South Africa.

Psychosocial Distress Screening Among Interprofessional Palliative Care Teams: A Narrative Review

With increased need for palliative care and limited staffing resources, non-social workers are increasingly responsible for screening for urgent psychosocial distress. The National Consensus Project guidelines call for all palliative care team members to be competent in screening across domains. Yet, in contrast to an abundance of evidence-informed tools for palliative social work assessments, standardization for interprofessional psychosocial screening is lacking. This lack of standardized practice may lead to harmful disparities in care delivery. The purpose of this narrative review is to examine current literature on evidence-informed practices for psychosocial screening within palliative care. Google Scholar, a university Summon library search engine, and prominent palliative care journals were searched using the same phrases to locate articles for inclusion. Each article was reviewed and synthesized across common themes. Although an abundance of validated screening tools exists for outpatient oncology-specific settings, there is minimal guidance on psychosocial screening tools intended for specialty palliative care. The most oft-cited tools have been met with concern for validity across diverse palliative care populations and settings. Additional research is needed to operationalize and measure brief psychosocial screening tools that can be validated for use by interprofessional palliative care teams, a stepping-stone for increased equity in palliative care practice.

Palliative care for patients with hematologic malignancies in Germany: a nationwide survey on everyday practice and influencing factors from the perspective of treating physicians

Integrating palliative care into the treatment of patients with advanced hematological malignancies (HM) remains challenging. To explore treating physicians’ perspectives on current palliative care practice and to evaluate factors influencing integration, we conducted a nationwide online survey. Based on literature and expert review, the survey addressed the importance of palliative care, communication about life-threatening conditions, challenges in establishing goals of care, and factors influencing the integration of palliative care. 207 physicians treating patients with HM in Germany participated. We used standard descriptive statistics to analyze quantitative data and a content structuring approach. Most physicians considered palliative care in HM to be very important (60.6%) and discussed life-threatening conditions with more than half of their patients (52%), especially when goals of care were changed (87.0%) or when patients raised the topic (84.0%). Disease-related factors, different professional perspectives on prognosis, and patient hopes were the main barriers to changing goals of care, but collaboration with colleagues and multidisciplinary teams provided important support. Time constraints were identified as the main barrier to integrating palliative care. The majority worked well with palliative care teams. Referral processes and conditions were perceived as minor barriers. The study highlights the need to address barriers to integrating palliative care into the management of patients with advanced HM. Future research should aim at optimizing palliative care for patients with HM.

Exploring Parent Experiences with Early Palliative Care Practices in the NICU.

Exploring Parent Experiences with Early Palliative Care Practices in the NICU.

Challenges for palliative care in times of COVID-19: a scoping review.

Many of the essential practices in palliative care (PC) had to be adapted to the COVID-19 pandemic. This global spread of the infectious respiratory disease, caused by SARS-CoV-2, created unprecedented obstacles. The aim of this research was to comprehensively assess the experiences and perceptions of healthcare professionals, individuals, and families in palliative and end-of-life situations during the COVID-19 pandemic. A scoping review was conducted using the databases CINAHL Complete, MEDLINE, Scopus, SciELO, Cochrane Central Register of Controlled Trials, Psychology and Behavioral Sciences, MEDIClatina, and Portugal's Open Access Scientific Repository. The review followed the JBI® methodological approach for scoping reviews. Out of the initially identified 999 articles, 22 studies were included for analysis. The deprivation of relationships due to the safety protocols required to control the spread of COVID-19 was a universally perceived experience by healthcare professionals, individuals in PC, and their families. Social isolation, with significant psychological impact, including depersonalization and despair, was among the most frequently reported experiences by individuals in palliative situation. Despite healthcare professionals' efforts to mitigate the lack of relationships, the families of these individuals emphasized the irreplaceability of in-person bedside contact. https://osf.io/xmpf2/.

Occupations and occupational therapy practice with Chinese older adults living with life-limiting illnesses in Singapore: A focus group study.

While Singapore is rapidly ageing and the need for palliative care services is projected to rise, there has been limited exploration of the occupations of Chinese older adults with life-limiting conditions. This study is the third in a series of three studies aimed to address this issue. This study also sought to discuss future directions for occupational therapy practice with Chinese older adults living with life-limiting illnesses in Singapore. The study adopted a qualitative exploratory design using focus groups. Participants were recruited using convenience and snowball sampling. Inclusion criteria were occupational therapists who had attained full registration status with the Allied Health Professionals Council in Singapore, had two or more years of practice as an occupational therapist, and had a current or recent palliative care caseload. Three focus groups with 16 participants were conducted, and three themes were constructed from the data through reflexive thematic analysis. Reflections on culture and occupations is about the impact of a collectivist culture on occupations, such as tensions new caregivers experience between keeping clients safe and respecting clients' choices. It also highlights that there will always be individual differences within any cultural group. Challenges of occupational therapy practice in palliative care describe the need for therapists to be comfortable with rest and ethical tensions participants faced with billing for sessions that mainly involved time spent conversing with clients and when clients and caregivers' goals differed. Finally, Moving forward is about the importance of having mentors and the learning needs of occupational therapists in palliative care. Occupational therapists experienced in providing services to palliative care clients in Singapore emphasised the collectivist nature of Singaporean Chinese families and contributed more information to its possible impact on occupations and occupational therapy practice and made suggestions for future practice.

Development of the pediatric family-based dignity therapy protocol for terminally ill children (ages 7-18) and their families: A mixed-methods study.

Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts. The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed. The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.

Consciously Choosing Unconsciousness

Consciously Choosing Unconsciousness

Home Ultrasound: A Contemporary and Valuable Tool for Palliative Medicine.

This narrative review explores the application of point-of-care ultrasound (POCUS) in palliative care and its feasibility in home care settings. POCUS has the potential to streamline diagnostic strategies without patient transfer to the hospital, expedite timely symptomatic relief, and reduce complications from specific palliative interventions. The advent of handheld ultrasound devices has made it an attractive diagnostic and interventional adjunct in acute palliative care. POCUS has gained widespread acceptance as part of routine care in emergency medicine and intensive care, guiding certain procedures and increasing their safety. The modernization and miniaturization of ultrasound equipment have made ultra-portable devices available, allowing for better-quality images at affordable prices. Handheld devices have the potential to revolutionize everyday clinical practice in home-based palliative care, contributing to important bedside clinical decisions. Palliative care patients often require diagnostic examinations in the last months of their lives, with CT being the most frequently performed imaging procedure. However, CT imaging is associated with high costs and burdens, leading to increased suffering and impaired quality of life. Clinical ultrasound, a dialogic imaging modality, offers a safer and more efficient approach to palliative care. POCUS applications, which are cost-effective, non-invasive, and well-tolerated, can be used to improve patient satisfaction and diagnostic understanding. POCUS is a valuable tool in palliative care, improving diagnostic accuracy and reducing the time to diagnosis for various pathologies. It is a standard of care for many procedures and improves patient safety. However, there are limitations to POCUS in palliative care, such as operator-dependent examination variability and limited availability of trained professionals. To overcome these limitations, palliative care physicians should receive mandatory training in POCUS, which can be incorporated into the core curriculum. Additionally, ultrasound teleconsulting can assist less experienced examiners in real-time examinations. The literature on POCUS in palliative care is limited, but research on patient-oriented outcomes is crucial. POCUS should be considered a supplement to good clinical reasoning and regulated radiological evaluations.

“Tie your camel first, then rely on God”: reconceptualizing Javanese Islamic values to support palliative care at home

BackgroundIn the last decade, there has been a growing concern to make palliative care more culturally sensitive and contextually appropriate. This concern is also relevant in Indonesia, where the progress of palliative care, particularly in home-based care, has been slow. Like elsewhere in the world, there has been a growing awareness of the importance of shifting from a curative orientation towards a palliative one, especially in cases where further medical treatment is futile. In this paper we argue that the development of palliative care practices would benefit greatly from learning about the values that are important for patients, families, and health professionals. It is important to understand these values to support forms of care that aim to enhance quality of life. To demonstrate this, we analyse the care values people in rural Java evoke in their home palliative care practices.MethodsWe conducted an eight-month ethnographic study involving forty-nine patients, families, and health professionals.ResultsWe identified three specific Javanese Islamic values: making an effort (ikhtiar), being sincere (ikhlas), and being in a state of surrender (pasrah). These values influenced the participants’ activities in a palliative care setting. Based on our findings, we suggest three strategies to incorporate these values into palliative care practices and to better facilitate palliative care’s integration into Javanese Muslim communities. The first strategy is to include efforts to reduce suffering and improve the quality of life using the concept of ikhtiar. The second strategy is to foster sincerity (ikhlas) to help patients and families accept the realities of their condition and provide care for patients at home. The last strategy is to clarify that palliative care is not synonymous with ‘giving up’ but can be seen as an act of pious surrender.ConclusionsOur study identified three Islamic-Javanese values that can be incorporated to strategies aiming at enhancing palliative care practices, resulting in care focused on improving quality of life rather than futile attempts at a cure.

Knowledge of Nurses Regarding Palliative Care in Tertiary Care Hospitals of Peshawar: A Cross-Sectional Study

Background: Palliative care represents a crucial element in enhancing the quality of life for patients facing life-limiting illnesses. Despite its importance, there exists a significant gap in knowledge among nurses, who are pivotal in delivering this care. The literature reveals diverse levels of understanding and practices across different healthcare settings globally, underscoring the need for focused research and educational interventions in specific regions, including Pakistan. Objective: This study aimed to assess the knowledge of nurses regarding palliative care in tertiary care hospitals in Peshawar, Pakistan, identifying key areas for improvement and contributing to the global discourse on enhancing palliative care education and practices among nursing professionals. Methods: A cross-sectional study design was employed, with a sample size of 377 nurses selected through convenient sampling from August to November 2023. The Palliative Care Quiz for Nurses (PCQN) was utilized to assess knowledge across three domains: philosophy and principles, control of pain and other symptoms, and psychosocial aspects. Data were analyzed using SPSS version 25, employing descriptive statistics and chi-square tests to examine the association between demographic variables and knowledge levels. Results: The study found that 61.3% of participants were female, with the majority (81.5%) born between 1991 and 2000. Regarding educational background, 53.3% were Post RN nurses, 45.6% BSN Graduate Nurses, and 1.1% MSN Graduate Nurses. The PCQN results indicated that 31.8% of nurses demonstrated good knowledge of palliative care, while 37.7% exhibited a lack of knowledge. Notably, post RN nurses showed higher knowledge levels compared to their BSN and MSN counterparts. Conclusion: The findings highlight a substantial need for targeted palliative care education and training among nurses in Peshawar, Pakistan. Tailored educational programs, continuous professional development, and specific interventions are essential to bridge the identified knowledge gaps, ensuring that nurses are equipped to provide high-quality palliative care.

Supportive Care Needs of Newly Diagnosed Cancer Patients in a Comprehensive Cancer Center: Identifying Care Profiles and Future Perspectives.

The prompt introduction of supportive care for patients with cancer leads to a better quality of life, potential survival benefits, and improvements in treatment safety. Considering that patients' needs vary, descriptive assessments could serve as a compass for an efficient and prompt healthcare response. The aim of this study was to identify supportive care needs in newly diagnosed patients according to cancer type. A retrospective study was conducted by collecting data from the case consultation and medical records of a comprehensive cancer center in France. Patients' needs were divided into twelve domains: nutrition, psychological support, psychiatric support, social care, physiotherapy, addictology, pain management, palliative care, pharmacology, complementary and alternative practice (CAM), sexual health, and speech therapy. Out of 6217 newly diagnosed patients of various cancer types who sought medical care at Gustave Roussy in 2021, 2541 (41%) required supportive cancer care (SCC), and of them, 1331 patients (52%) required two or more different SCC specialist interventions. The top five interventions were dietary (for 60% of patients), physiotherapy (33%), psychology (29%), social care (28%), and pain management (16%). Subgroup analysis according to cancer department highlighted additional specific needs: CAM for breast cancer patients (11%), speech specialist (27%) and addictologist (22%) interventions for ENT patients, psychiatry consultations for neurological patients (16%), and palliative care for dermatology patients (23%). The aforementioned data suggest that an early, multidisciplinary supportive care intervention should be required. Assembling human resources at the time of diagnosis within a dedicated day unit would be the next appropriate step in developing personalized care pathways related to the highlighted needs.

Avoidable emergency department visits among palliative care cancer patients: novel insights from Saudi Arabia and the Middle East

BackgroundSeveral studies emerging from developed countries have highlighted a significant number of potentially avoidable emergency department (ED) visits by cancer patients during the end-of-life period. However, there is a paucity of information from developing nations regarding palliative care practices and the utilization of the ED by palliative care patients. Herein, we aim to characterize ED admissions among patients receiving palliative care at our tertiary center in Saudi Arabia.MethodsThis is a retrospective, cross-sectional study evaluating ED visits amongst adult patients with advanced cancer who were receiving treatment under the palliative care department. This study took place over a period of 12 months from July 2021 through to July 2022. Three palliative care specialist physicians independently and blindly reviewed each patient’s ED visits and determined whether the visit was avoidable or unavoidable.ResultsA total of 243 patients were included in the final analysis, of which 189 (78.1%) patients had unavoidable visits and 53 (21.9%) patient visits were classified as avoidable. A significantly higher proportion of breast cancer patients presented with unavoidable admissions (14.3% vs. 3.8%, P = 0.037) compared to other cancer types. The incidence of dyspnea (23.8% vs. 5.7%, P < 0.001) and fevers/chills (23.3% vs. 5.7%, P = 0.005) was significantly higher in patients with unavoidable visits. Patients with avoidable visits had a significantly greater proportion of visits for dehydration (13.2% vs. 2.1%, P = 0.002). Notably, although hospital stay was significantly longer in the unavoidable group (P = 0.045), mortality for palliative care patients—regardless of whether their ED visit was avoidable or unavoidable—was not statistically different (P=-0.069).ConclusionTo our knowledge, this is the largest and most comprehensive study from Saudi Arabia and the Middle East providing insights into the utilization of palliative care services in the region and the propensity of advanced cancer patients towards visiting the ED. Future studies ought to explore interventions to reduce the frequency of avoidable ED visits.

STRATEGIES TO PROMOTE THE MENTAL HEALTH OF PATIENTS IN PALLIATIVE CARE: INTEGRATIVE REVIEW

The respective research aims to analyze national and international publications that investigate mental health promotion strategies carried out by the nursing team for patients in palliative care. It is understood that palliative care is a methodology developed to provide differentiated assistance to patients with advanced illness until the end of life, in the hospital and home environment, based on the patient-family binomial, called the hospice movement. To this end, a bibliographical research was carried out, using a qualitative descriptive approach using the techniques of systematic integrative literature review. Focusing on the results, 7 articles were selected and after analyzing the studies, the categories emerged: 1) Strategies for promoting the mental health of patients in palliative care: caring for patients, family members and workers; 2) Necessary requirements for humanized nursing care for patients in palliative care: Professional training and continuing education. The study concludes that it is extremely important that nursing professionals are equipped with skills and qualifications to develop strategies that promote the mental health of patients and their families, as well as health professionals. To achieve this, it is necessary to disseminate good practices in palliative care through humanized care with a focus on promoting the mental health of everyone involved using as strategies the insertion of empathy, solidarity, spirituality, effective communication, as well as investing in professional training and ongoing in-service education.