Core Palliative Care Competencies for Undergraduate Nursing Education: International Multisite Research Using Online Nominal Group Technique.

Background: Nurses should have appropriate education and required competencies to provide high-quality palliative care. The aim of this international multisite study was to list and evaluate core palliative care competencies that European nurses need to achieve in their education to provide palliative care. Methods: The Nominal Group Technique (NGT) was used as a data collection method. NGT meetings were organized in four European countries. Targeted groups of palliative care professionals with diverse contextual and professional backgrounds participated in the NGTs. The research question was: "What are the core competencies in palliative care that need to be achieved during undergraduate nursing education?" Data analysis was done in two stages: grouping the top 10 answers based on similarities and thematic synthesis based on all the ideas produced during the NGTs. Results: Palliative care core competencies based on the research were (1) competence in the characteristics of palliative care; (2) competence in decision-making and enabling palliative care; (3) symptom management competence in palliative care; (4) competence in holistic support in palliative care; (5) active person- and family-centered communication competence in palliative care; (6) competence in empathy in palliative care; (7) spiritual competence in palliative care; (8) competence in ethical and legal issues in palliative care; (9) teamwork competence in palliative care; and (10) self-awareness and self-reflection competence in palliative care. Conclusions: It was possible to find differences and similarities in the top 10 palliative care core competencies from different countries. Thematic synthesis of all the data showed that there were various competencies needed for nursing students to provide quality palliative care.

Capitalizing on the Value of the Clinical Nurse Specialist in Palliative Care.

The clinical nurse specialist (CNS) is 1 of the 4 advanced practice registered nurse roles and a vital component in palliative and hospice nursing care. The CNS is a specialty expert clinician capable of practicing in a variety of health care settings including acute care, primary care, and specialty ambulatory care. The CNS integrates palliative care standards across the 3 spheres of impact (patient, nurse, and system) to improve care patients receive at end of life, mentoring and coaching nurses in the unique aspects of palliative and hospice care (HPC), and serving as a clinical expert for the organization to ensure best practices and quality outcomes. Clinical nurse specialists are trained to diagnose, treat, and prescribe to provide holistic care to their patients. However, challenges exist for the CNS role due to variations in state regulations regarding title protection and scope of practice leading to inconsistency in and misperception of the CNS role. Clinical nurse specialists have a wealth of expertise that can lead to systematic improvement in patient outcomes, advances in hospice and palliative nursing practice, and management of HPC patients and their families. Clinical nurse specialists are a hidden treasure that should be integrated into HPC practice.

In Every Detail: Spiritual Care in Pediatric Palliative Care Perceived by Healthcare Providers.

CONTEXT: Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. OBJECTIVES: To identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals. METHODS: A qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis. RESULTS: Participants described that the essence of spiritual support was provided "in every detail" throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers' own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child. CONCLUSION: This study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.

Caregivers' Perspectives on Ethical Challenges and Patient Safety in Tele-Palliative Care: An Integrative Review.

Tele-palliative care enables people with a life-limiting illness to consult with palliative care staff without having to leave their homes but requires commitment from all stakeholders, particularly on ethical challenges and patient safety issues. When using telecommunications and virtual technology, ethical challenges and patient safety aspects must be taken into account. The aim was to describe formal and informal caregivers' opportunities in tele-palliative care and the associated ethical and safety challenges using a Whittemore and Knafl integrative review method. Ethical and patient safety perspectives were extracted from studies reporting on tele-palliative care interventions. Content on ethically considerable information on the intervention was coded, categorized, and summarized into a matrix developed in advance from literature on socio-technical arrangements and eHealth applications. Nine studies from experimental and nonexperimental research were included. Four studies reported exclusively on the perspective of formal caregivers, 3 studies addressed the perspective of patients and informal caregivers, and 2 studies covered the perspectives of both. Studies of tele-palliative care interventions implicate effects on patient-caregiver relationships but also show that technology is not seen as a replacement of holistic palliative care. However, the authors do not address other relevant ethical issues (eg, sustainability) or consider aspects of patient safety. There is a need for further research to assess privacy, data security, and patient safety in tele-palliative care from the perspective of caregivers as telehealth becomes increasingly important.

Patient and families' perspectives on telepalliative care: A systematic integrative review.

BACKGROUND: Telepalliative care is increasingly used in palliative care, but has yet to be examined from a patient and family perspective. A synthesis of evidence may provide knowledge on how to plan and provide telepalliative care that caters specifically to patients and families' needs. OBJECTIVE: To synthesise evidence on patients and families' perspectives on telepalliative care. DESIGN: A systematic integrative review (PROSPERO #CRD42022301206) reported in accordance with PRISMA 2020 guidelines. Inclusion criteria; primary peer-reviewed studies published 2011-2022, patient and family perspective, >18 years, telepalliative care and English/Danish language. Quality was appraised using the mixed-methods appraisal tool, version 2020. Guided by Toronto and Remington, data were extracted, thematically analysed and synthesised. DATA SOURCES: MEDLINE, EMBASE, PsycINFO and CINAHL were searched in March 2022 and updated in February 2023. RESULTS: Forty-four studies were included. Analysis revealed five themes; the effect of the Covid-19 pandemic on telepalliative care, adding value for patients and families, synchronous and asynchronous telepalliative care, the integration of telepalliative care with other services and the tailoring and timing of telepalliative care. CONCLUSION: Enhanced access to care and convenience, as attributes of telepalliative care, are highly valued. Patients and families have varying needs during the illness trajectory that may be addressed by early integration of telepalliative care based on models of care that are flexible and combine synchronous and asynchronous solutions. Further research should examine telepalliative care in a post-pandemic context, use of models of care and identify meaningful outcome measures from patient and family perspectives for evaluation of telepalliative care.

Top Ten Tips Palliative Care Clinicians Should Know About Integrative Palliative Care.

Integrative medicine (IM) use is widespread among individuals living with serious illness. There is a natural alignment between the fields of IM and palliative care (PC) rooted in their shared core values. Integrative palliative care (IPC) is an emerging focus within the field of PC that aims to broaden the healing toolkit available to patients with serious illness by combining standard-of-care biomedical treatments with evidence-informed integrative and complementary medicine practices with the goal of enhancing quality of life at every stage of a person's health journey. This article is an evidence-based guide to incorporating IPC practices into the care of seriously ill individuals.

Nurses experience with body care among palliative care patients: a phenomenological study.

BACKGROUND: Palliative care is defined as active and global care that provides holistic care integrating the body, mind and spirit of the dying person. A person's health deteriorates at the end of life and nurses facilitate patients to manage their personal body care. Knowing and considering the impact of disease on individuals' lives, how they adapt to cope with it, and the meaning they give to it, can help nurses. This is because of the embodiment concept of living in and through our bodies. The aim of the study is to explore palliative care patients' experiences with nurses during body care. METHODS: A descriptive phenomenological approach based on Husserl's philosophical perspective was used. A purposive sample of eight palliative care patients were enrolled in the study. Semi-structured interviews were conducted between November 2018 and January 2019, in an Italian hospice. The interviews were about patients' feelings during nursing body care. The transcripts were analysed using Giorgi's phenomenological method. Several strategies were used to ensure the study's reliability. RESULTS: The qualitative analysis revealed six categories that converged in three themes: 1) body care requires a specific competence; 2) patients experience difficulties during care by nurses; 3) compassionate care relationships help patients to find wellbeing and balance. CONCLUSIONS: People at the end of life find the deterioration of their body distressing and a reminder that they are about to die. These considerations give us an understanding of patient embodiment and the significance of a patient's lived experiences at the end of their life. This phenomenon in nursing should be explored further in future research, to help inform more targeted care strategies.

The meaning of dying and death for children, their carers, and families: a scoping review.

BACKGROUND: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. METHODS: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0-19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). RESULTS: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. CONCLUSIONS: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada.

Filling gaps in experiences religious understanding of people living with cancer in palliative care: a phenomenological qualitative study.

BACKGROUND: According to a phenomenology of contemporary religion, the analysis of religious experiences finds that they are part of an individual's search for something powerful that overcomes him seeking not only a need, but the meaning of all existence. The present study aims to contribute to a deeper understanding of the religious experiences of people living with cancer in palliative care (PC) and fill gaps in access to experience, with regard to how it was properly lived. METHODS: A qualitative, phenomenological, cross-sectional study was conducted with 14 people living with cancer undergoing PC at two outpatient clinics of a public hospital. The experiences were accessed through in-depth interviews and the results were analysed according to the principles of classical phenomenology. RESULTS: The patients confidently surrendered to the divine, attributing to it the power of continuity of life or not, which sustained them and launched them into horizons of hope, directing them to possibilities of achieving meaning in life, which it fed back their faith and to continue living, opening them up to an intense perception of the value of life. CONCLUSIONS: The religious positions of confident surrender to the divine, to his will and a belief in his intervention, regardless of the outcome, opened possibilities to patients for the belief in the continuity of life by the power of faith. This position allowed the patients in this study to visualize achievements in the present and in the future, opening a horizon of hope, meaning and value of living. This study showed how this elements are presented and sustained, providing subsidies to health professionals seeking to provide more holistic care.

Kenyan palliative care providers' and leaders' perceptions of palliative care research needs and support to facilitate rigorous research.

BACKGROUND: Palliative care (PC) can reduce symptom distress and improve quality of life for patients and their families experiencing life-threatening illness. While the need for PC in Kenya is high, PC service delivery and research is limited. Qualitative research is needed to explore potential areas for PC research and support needed to enable that research. This insight is critical for informing a national PC research agenda and mobilizing limited resources for conducting rigorous PC research in Kenya. OBJECTIVES: To explore perceptions of priority areas for PC research and support needed to facilitate rigorous research from the perspective of Kenyan PC providers and leaders. METHODS: Focus groups (FGs) were conducted in November and December of 2018 using a semi-structured interview guide. FGs were audio-recorded, transcribed, and analyzed using a thematic content analysis approach. RESULTS: Three FGs were conducted (n = 22 participants). Ten themes related to PC research emerged, including research on: 1) beliefs about death, disease, and treatment to inform PC; 2) awareness about PC, 3) integration of PC within the health system; 4) understanding caregiver experiences and needs; 5) community health volunteers (CHVs) and volunteer programs; 6) evaluation of costs and benefits of PC; 7) treatment approaches, including complementary and alternative medicine (CAM) and advanced diagnostics at end of life; 8) other suggestions for research, 9) populations in need of PC research; and 10) resources for enabling research. CONCLUSIONS: Kenyan PC providers and leaders identified key areas requiring increased scientific inquiry and critical resources needed to enable this research. These findings can help to focus future PC research in Kenya and encourage funding agencies to prioritize the issues identified.

Palliative care as a digital working world (PALLADiUM) - A mixed-method research protocol.

BACKGROUND: In Palliative Care, actors from different professional backgrounds work together and exchange case-specific and expert knowledge and information. Since Palliative Care is traditionally distant from digitalization due to its holistically person-centered approach, there is a lack of suitable concepts enabling digitalization regarding multi-professional team processes. Yet, a digitalised information and collaboration environment geared to the requirements of palliative care and the needs of the members of the multi-professional team might facilitate communication and collaboration processes and improve information and knowledge flows. Taking this chance, the presented three-year project, PALLADiUM, aims to improve the effectiveness of Palliative Care teams by jointly sharing available inter-subjective knowledge and orientation-giving as well as action-guiding practical knowledge. Thus, PALLADiUM will explore the potentials and limitations of digitally supported communication and collaboration solutions. METHODS: PALLADiUM follows an open and iterative mixed methods approach. First, ethnographic methods - participant observations, interviews, and focus groups - aim to explore knowledge and information flow in investigating Palliative Care units as well as the requirements and barriers to digitalization. Second, to extend this body, the analysis of the historical hospital data provides quantitative insights. Condensing all findings results in a to-be work system. Adhering to the work systems transformation method, a technical prototype including artificial intelligence components will enhance the collaborative teamwork in the Palliative Care unit. DISCUSSION: PALLADiUM aims to deliver decisive new insights into the preconditions, processes, and success factors of the digitalization of a medical working environment as well as communication and collaboration processes in multi-professional teams. TRIAL REGISTRATION: The study was registered prospectively at DRKS (Deutsches Register Klinischer Studien) Registration-ID: DRKS0025356 Date of registration: 03.06.21.

Perceptions of Australian Palliative Medicine Specialists Toward Acupuncture for Palliative Care.

Background: With increasing multidisciplinary care strategies, palliative medicine practitioner perceptions toward acupuncture integration are significant. Objective: To evaluate acupuncture availability and acceptability in Australian palliative care. Outcomes: (1) Domains of the survey included participant characteristics, (2) workplace availability, (3) personal attitudes, and (4) recommendation likelihood. Design: An online REDCap survey of Australian palliative medicine practitioners was administered. Results: Acupuncture was mostly not available/permitted at workplaces (45.2%) due to cost/funding (57.1%) and limited evidence (57.1%). When available by workplace (24.2%) or affiliated service (4.8%), doctors mostly administered acupuncture (66.7%). Respondents were not up to date with current research (71.4%). Referral likelihood increased with confidence in provider (80.0%), workplace availability (77.1%), and patient prior/current use (77.1%). Patient acupuncture discussions were rare (62.9%) with barriers of effectiveness uncertainty (71.4%) and limited knowledge of availability (57.1%). Conclusion: Despite available integrative services and acceptability by Australian palliative medicine practitioners, utilization is low. Further research into acupuncture effectiveness for palliative symptoms, feasibility, and patient acceptability is required.

Palliative care in rural areas - collaboration between district nurses and doctors: an interview study.

BACKGROUND: Palliative care requires major nursing interventions as well as medical interventions; thus, both district nurses and doctors are vital to the palliative team. Sparsely populated rural areas are characterised by large geographic distances with the nurses and doctors located far away from each other. If collaboration does not work, this can create challenges for district nurses when managing patients' symptoms. The aim of this study was to describe district nurses' experiences of collaborating with doctors-in-charge during palliative home care in sparsely populated rural areas. METHOD: Semi-structured interviews were conducted with 10 district nurses. Inductive content analysis was used to analyse the data. RESULTS: The experiences of the district nurses are described under the overarching theme of Experiences of acting as the patient's advocate, which is divided into two categories: Feeling secure in oneself and the other person and Feeling alone when collaboration breaks down. CONCLUSION: Consensus and coherence, or lack thereof, between district nurses and doctors affect how collaboration is experienced. Positive experiences are generated when the district nurse and the doctor share a holistic approach, while collaboration is experienced as dysfunctional when the doctor's decisions are not consistent with what the nurse judges to be beneficial to the patient. An understanding of how collaboration across long distances is experienced in rural areas is necessary to enhance collaboration.

Specialist Palliative Care and Dementia: Staff Challenges and Learning Needs.

Objective: This study explored the perspectives of specialist palliative care (SPC) teams in Ireland, in relation to personal learning needs and education regarding dementia care. Methods: This mixed-methods study involved a survey and focus group. SPC staff were recruited through a professional palliative care society and via hospices in 4 regions. Survey items included challenges in clinical care, personal learning needs, and preferred modes of educational delivery. Quantitative data analysis was descriptive; open-answer survey questions and the focus group transcript underwent thematic analysis. Results: In total, 76 staff completed surveys and rated the following as most challenging: timely access to community agency and specialist support; and managing the needs of people with dementia (PwD). Respondents volunteered additional challenges around the timing/duration of SPC involvement, prognostication, and inadequate knowledge of local services. Staff ranked learning needs as highest in: nonpharmacological management of noncognitive and cognitive symptoms; differentiation of dementia subtypes; and pharmacological management of cognitive symptoms. The focus group (n = 4) gave deeper perspectives on these topics. Overall, 79.2% of staff preferred formal presentations by dementia-care specialists and 76.6% preferred e-learning. Conclusion: Several dementia-care challenges and learning needs are identified by SPC staff, as above. These can inform the design and delivery of tailored education programs for SPC staff. There is also a need for closer working between dementia services and SPC services to provide integrated, holistic care for PwD. One aspect of achieving this is greater awareness of local dementia-care services among SPC staff, and vice versa.

Neuropalliative care for progressive neurological diseases: A scoping review on models of care and priorities for future research.

BACKGROUND: Neuropalliative care is a newly-defined subspeciality bringing specific aspects of fields of neurology and palliative care together to better meet the complex care needs of people with progressive neurological diseases. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. AIM: To identify current models and approaches to neuropalliative care for people with progressive neurological diseases and the priorities for future research work. DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute. DATA SOURCES: An electronic search of the literature was undertaken from six sources including MEDLINE (Ovid), EMCARE, PsycINFO and CINAHL covering the years January 2011 to September 2021. RESULTS: Twenty-eight studies were found examining neuropalliative care from the perspectives of 4795 PND patients, 774 informal carers and 138 health professionals. All studies held themes of integrative care, with most studies employing outpatient models of multidisciplinary care. Topics discussed included: overcoming local system-issues, providing education for professionals, patients and carers, early referral and capturing outcome measures for quality-assurance and future research work. CONCLUSIONS: Most models of neuropalliative care described in the international literature are predominantly outpatient, multidisciplinary and integrative. Clinicians typically utilise existing neurology and palliative care infrastructure to provide care. More high-quality research and outcome tools are needed to guide the design of evidence-based palliative care for people with progressive neurological diseases.

Paediatric palliative care for the generalist.

Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.

Comprehensive coordinated community based palliative care (C3PaC) model for cancer patients in North India: a mixed-method implementation research study protocol.

BACKGROUND: Cancer remains an escalating and challenging public health issue. The management, especially palliative care (PC), is disintegrated and out of reach of in need patients. The overall aim of the project is to develop a feasible and scalable Comprehensive Coordinated Community based PC model for Cancer Patients (C3PaC); congruent with socio-cultural, context and unmet needs in north India. METHODS: A mixed method approach will be used for three-phased pre- and post-intervention study in one of the districts of North India, having a high incidence of cancer. During phase I, validated tools will be used for quantitative assessment of palliative needs among cancer patients and their caregivers. Barriers and challenges for provision of palliative care will be explored using in-depth interviews and focus group discussions among participants and health care workers. The findings of phase I along with inputs from national experts and literature review will provide inputs for the development of the C3PAC model in phase II. During phase III C3PAC model will be deployed over a period of 12 months and its impact assessed. Categorical and continuous variables will be depicted as frequency (percentages) and mean ± SD/median (IQR) respectively. Chi-square test/Fischer test, independent samples Student t-tests and Mann-Whitney U tests will be used for categorical, normally and non-normally distributed continuous variables, respectively. Qualitative data will be analyzed using thematic analysis using Atlas.ti 8 software. DISCUSSION: The proposed model is designed to address the unmet palliative care needs, to empower community-based healthcare providers in comprehensive home-based PC and to improve the quality of life of cancer patients and caregivers. This model will provide pragmatic scalable solutions in comparable health systems particularly in low- and lower-middle Income countries. TRIAL REGISTRATION: The study has been registered with the Clinical Trial Registry-India (CTRI/2023/04/051357).

Should Palliative Care Teams be Involved in Medical Assisted Dying?

Palliative care teams offer holistic care for patients experiencing serious illness and related suffering, nevertheless, there are times when clinicians are asked by patients for help to obtain assisted dying. Patients in a growing number of areas may be eligible to request medically administered or self-administered lethal medications to control the timing of death and palliative care practices, established to neither hasten nor postpone death, may be challenged when caring for patients asking for assisted dying. In this "Controversies in Palliative Care" article, we invite three experts to provide a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. These experts suggest palliative care teams should be and are involved in medical assisted dying, but how palliative care teams are involved may depend on type of assisted dying requested, team members' scope of practice, legal regulations, and institutional guidelines. Research is needed on many aspects of assisted dying and palliative care including improving evidence-based clinical guidelines, addressing the needs of families, and coping strategies for all involved. An international study comparing assisted dying practices within, and outside palliative care may inform policy helping to clarify whether the integration of palliative care in assisted dying improves end-of-life care. In addition to research, it is recommended that researchers and clinicians collaborate on the development of a clinical textbook on assisted dying and palliative care to support all palliative care team members, offering guidelines and recommendations for practice.

A global exploration of palliative community care literature: An integrative review.

AIM: This review sought to discover how community nurses globally provide palliative care, with specific focus on how they manage the personal and professional stressors associated with caring for dying clients in the home. DESIGN: An integrative review methodology was used to gain insight into how community palliative care is delivered worldwide. BACKGROUND: The provision of home palliative care by community nurses gives clients the ability to spend their final days in familiar surroundings. Research has focussed on the provision of palliative care in the inpatient setting, with little known about the community setting. METHODS: Data were collected through a literature search, then a critical analysis approach was used to evaluate the strengths of palliative care literature by analysing recurrent themes to stimulate further research on the topic. DATA SOURCES: The following databases were used to conduct the literature search: CINAHL, Medline, Pubmed, Scopus, Ovid. RESULTS: The results highlighted the importance of building a skilled palliative community nursing workforce and the need to offer specialised palliative care training to nurses, particularly around difficult conversations and service coordination. CONCLUSION: The literature identified the challenges implicit within the community nursing role in delivering palliative care, but it did not identify the factors that enhance the nurses' ability to manage the stressors associated with this role. The input of nurses must be sought to understand the development of resilience. IMPLICATIONS FOR THE PROFESSION: Community palliative care nursing requires time spent with clients and family members who are suffering, therefore predisposing nurses to stress. Effort must be made to provide palliative care nurses with support to enhance professional resilience.