The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
The purpose of this article is to describe the lessons learned in the course of a 5-year research study on a palliative care intervention for persons on a Phase 1 clinical trial. Patients who are participating in Phase 1 trials and the families who care for them may be especially vulnerable and require special attention. The patients are generally experiencing the effects of advanced disease, and they also may soon experience unknown side effects, intense treatment regimens, and the emotional stress of an uncertain future as a result of clinical trial participation. Oncology nurses in all roles including clinical trials/research nurses, clinicians, educators, and advanced practice registered nurses play a critical role in addressing the quality-of-life concerns in this population. Palliative care can provide better symptom control and information on treatment options and facilitate a better understanding of patient/family goals. Attending to these factors can ultimately mean improved survival for the advanced cancer patient, and support for these patients can assist in advancing the field of oncology as these investigational therapies hold the promise for enhancing survival.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
Introduction: The public health strategy of the World Health Organization for palliative care is to increase access to palliative care services by integrating it with the healthcare systems. Therefore, the value of palliative care service provision by nurses who deliver the majority of care to chronical patients is an important issue. The objective of the study is assessing nurses' practice of palliative care.
Methods: A facility based cross-sectional study was carried out among 278 nurses working in governmental health facilities of Shire Endasilasie town, Tigray region, Ethiopia from February to June 2018. The questionnaire was revised based on the findings of the pre-test. The collected data was checked for its completeness, consistency, and accuracy before analysis. Data were entered and analyzed using SPSS version 22. The final result was reported using text and tables.
Results: A total of 278 nurses were included in the study and the response rate was 100%. The majority of the participants (71.9%) were females and the mean age of the respondents was 32.08 years (range from 20 to 60). Approximately two-thirds (74.8%) of the respondents had poor knowledge of palliative care practice. Half of the study participants reported emotional support gained as primary psychological support. Commonly used drugs for severe pain were paracetamol or ibuprofen 202 (72.2%) and 47.8% nurses focus on quality patient pain assess.
Conclusion: The majority of the nurses had a poor practice of palliative care.
OBJECTIVES: to describe the experience of conducting workshops for teaching the subcutaneous fluid infusion therapy in palliative care patients.
METHODS: experience report based on four workshops with a workload of nine hours each, addressing the teaching, implementation of the technique, and management in the use of subcutaneous fluid infusion therapy in patients in palliative care. The host institution was a private hospital, which had two care units in the state of Rio de Janeiro.
RESULTS: we identified little knowledge about the theme. Due to the dynamics used, the workshops made it possible to qualify the participants to perform and manage the subcutaneous route in palliative care environments.
CONCLUSIONS: the workshops were an important means of training, qualification, and dissemination of nursing care in a palliative care environment. The resources used to enable the qualification in the execution and management of the presented technique.
With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.
Background: oral health problems among people receiving palliative care are common and can significantly affect quality of life. Nurses are at the frontline of palliative care in Australia. However, how optimal oral health care is addressed in clinical practice by palliative nurses is not known.
Aim: To explore the perceptions of nurses working in Australian palliative care settings to determine the acceptability, challenges and recommendations that need to be considered to develop and implement an oral health care model in palliative care settings.
Methods: Two focus groups were conducted with community (n = 8) and inpatient nurses (n = 10) working in urban palliative care settings.
Findings: Four main themes were developed through consensus: 1) Oral health is important in the palliative care setting; 2) Additional training could enhance what nurses already do; 3) Barriers to receiving oral care: a structural issue; 4) Exploring alternative pathways to dental services.
Discussion: Nurses recognised the importance of oral health in palliative care; however, the paucity of set protocols based on existing guidelines meant that oral care was often unstructured. Systemic factors reduced the number of available options for people receiving palliative care to access professional dental treatment. Although alternative solutions, including teledentistry services, were explored, there were some constraints.
Conclusion: A palliative care oral health model of care would need to integrate existing formal guidelines into a comprehensive framework specific for palliative care nurses and develop palliative care oral health training for them taking into consideration existing barriers for people to receive professional dental treatment.
District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning.
Background: Palliative care exists in diverse healthcare settings. Nurses play a crucial role in its provision. Different levels of palliative care provision and education have been recognized in the literature. Therefore, nurses need a set of various competencies to provide high-quality palliative care.
Aims: To systematically synthesize the empirical evidence of (1) nursing competencies needed in palliative care and (2) whether these competencies differ across the level of palliative care.
Design: Systematic integrative review with thematic synthesis. Prospero: CRD42018114869.
Data sources: CINAHL, PubMed, Academic Search Premier, Scopus and Medic databases. Studies on nursing competencies linked to palliative care reported in English, Swedish, Finnish, Spanish, Portuguese or German were considered. Search terms: ‘palliative care or hospice care or end-of-life care’, ‘competency or professional competence or skills’ and ‘nursing’. Articles were independently screened and reviewed by two researchers. Quality appraisal was conducted following Hawker’s criteria.
Results: A total of 7454 articles were retrieved, 21 articles were included in the analysis. Six diverse nursing competencies dimensions, namely leadership, communication, collaboration, clinical, ethico-legal and psycho-social and spiritual were identified. The reports rarely defined the level of palliative care and covered a wide array of healthcare settings.
Conclusion: Nurses need a wide range of competencies to provide quality palliative care. Few studies focused on which competencies are relevant to a specific level of palliative care. Further research is needed to systematize the nursing competencies and define which nursing competencies are central for different levels of palliative care to enhance palliative care development, education and practice.
Background: Through the British Columbia, Prospective Outcomes and Support Initiative (POSI), registered nurses collect patient-reported outcome (PRO) data during telephone follow-up with palliative oncology patients.
Objective : The research objective was to describe the usefulness and influence of the nursing care provided through POSI follow-up on palliative patients and health services.
Methods : We used a qualitative interpretive description approach involving the collection and analysis of semistructured interview data with 20 palliative patients and 12 oncology nurses. All participant data were subjected to an inductively derived coding framework. Analytic categories were identified and iteratively revised through constant comparative techniques to develop representative themes.
Results : The accounts of patients and nurses suggest that telephone follow-up with PROs enabled the nurses to (1) focus on the priorities of patients experiencing complex health challenges, (2) manage complex symptoms, (3) ease the patient’s transition home, and (4) improve access to and use of health services. Suggestions for improving POSI nurse follow-up centered on flexibility in the timing of the follow-up, creating dedicated POSI work assignments, and having additional time to personalize assessments and nursing care beyond the PRO questionnaires.
Conclusions : Nursing care employing PROs via telephone follow-up can improve palliative cancer patients’ quality of life and health service use.
The COMFORT Model has recently been revised based on feedback from bedside nurses working in palliative care and oncology and includes the following components: Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, and Team. Based on clinical and nonclinical research in hospital, hospice, palliative care, and interdisciplinary education settings, the authors present the updated COMFORT Model. Originally introduced in 2012 to support the work of the nurse, the model is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by nurses, but rather a set of communication principles that are practiced concurrently and reflectively during patient/family care. In its restructuring, we focus on the role of health literacy throughout the COMFORT components in relationship to the health literacy attributes of a health care organization. A brief summary of COMFORT components is provided and includes strategies and competencies contributing to a health-literate care organization. Both health literacy and COMFORT are explored using specific communication challenges that underscore the role of the nurse in accomplishing person-centered and culturally responsive care, especially in chronic and terminal illness. The integration of the COMFORT Model into nursing education is proposed.
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.
This study aimed to identify the relationships of perception of hospice and palliative care with emotional intelligence and cognitive empathy in nursing students. The participants were 458 nursing students. Data were collected using structured questionnaires and analyzed with Pearson correlation coefficients, independent-samples t test, and binary logistic regression. Perception of hospice and palliative care was significantly and positively correlated with emotional intelligence (r = 0.224, P < .001) and cognitive empathy (r = 0.311, P < .001). Mean score differences of perception of hospice and palliative care by emotional intelligence and cognitive empathy were statistically significant (t = -3.973, P < .001; t = -4.109, P < .001, respectively). Logistic regression yielded an odds ratio of 1.860 (P < .001; 95% confidence interval, 1.283-2.698) between the perception of hospice and palliative care and emotional intelligence and an odds ratio of 2.028 (P < .001; 95% confidence interval, 1.394–2.951) between the perception of hospice and palliative care and cognitive empathy. Emotional intelligence and cognitive empathy should be cultivated to raise nursing students' perception of hospice and palliative care and must be included when developing related curricula and extracurricular programs.
Nurses spend more time with seriously and terminally ill patients across the continuum of care than other health professionals, yet nursing students lack adequate palliative care education and experience when they transition to practice. In response to the American Association of Colleges of Nursing CARES competencies for enhanced preparation in palliative care, the End-of-Life Nursing Education Consortium developed modules for undergraduate programs. Nursing students' life experiences and their prior involvement with death and dying situations shape their potential achievement of end-of-life learning outcomes. The purpose of this study was to explore traditional and nontraditional students' perspectives and outcomes of their lived experiences in response to the End-of-Life Nursing Education Consortium modules and current palliative care program curriculum. Following university institutional review board approval, the phenomenological qualitative study included 2 focus groups of traditional and transfer students. Thematic data analysis revealed 4 primary themes with differences noted between groups in response to these themes: (1) witnessing suffering and death, (2) building courage and competence, (3) conversation challenges, and (4) curriculum issues and recommendations. Implications for future palliative care education indicate opportunities to better support students through expanded simulations and debriefing sessions, integrated roles for clinical faculty and preceptors, and interdisciplinary team collaboration opportunities across settings.
A growing population of persons with a serious illness will place higher demands on health care professionals to provide the palliative care needed. A Palliative Care Advanced Practice Registered Nurse (APRN) Externship was developed and implemented as a novel way to increase access to palliative care with the potential to be replicated in multiple locations. Two APRN cohorts with a total of 10 APRNs participated in a 1-week educational program, including both classroom and clinical experiences, in 1 such site. The effectiveness of the program was evaluated by participants through an electronic survey and debriefings. Active learning experiences included role play, case studies, and clinical observation and were rated as highly valuable by participants. An important theme concerning the validation of current practice was identified. Future externship programs should be refined by incorporating participant feedback and continuing to use a variety of techniques to engage learners with diverse learning styles.
It is an international consensus that health care workers should be well trained to promote care for seriously ill and dying patients. Nursing students have reported that they feel inadequately prepared for palliative care. Simulation exercises have been described as increasing knowledge, skills, and competence, and participants have reported that they are more confident and prepared for palliative care with this learning approach than without. So far, there has not been much reported on how simulation contributes to learning in clinical practice. Therefore, this study explored whether learning outcomes from palliative care simulation further developed in practice. Second-year bachelor's-prepared nursing students voluntarily participated in a simulation activity as part of their hospital practice. Eleven students were interviewed about their learning experiences. The findings indicate that a prerequisite for further learning was to actively choose palliative care. Relationships with nurses, patients, and relatives and factors in themselves served as gatekeepers for attending learning situations. Becoming a nurse who can provide palliative care was described as an emotionally challenging experience. Elements that promoted learning outcomes in palliative care were simulation experience, clarified expectations, support, and a good dialog with the nurse before and after the learning situation.
Unclear communication of inauspicious prognoses may disorientate both patients and their relatives, drastically jeopardizing the planning of palliative care. This paper considers the issue of truth-telling in the communicative problems of nurses and students of nursing with terminally ill patients. The fundamental objective is the analysis of the difficulties related to the lack of truth-telling and how it might impact their professional and personal lives. A qualitative study was realized, involving 47 participants, both nurses (25) and nursing students (22), working in palliative care units or in associations of volunteers for the assistance of oncological patients. The exploration was focused on the way they relate to patients who are not aware of their real health conditions and their consequences. Particular attention was paid to their opinions concerning what could be done in order to manage such problematic situations in the near future.
OBJECTIVE: The aim of this review was to explore the experiences of nursing students participating in end-of-life education programs.
DESIGN: A systematic review.
DATA SOURCES: Exhaustive literature searches were performed using seven electronic databases: Medline, Scopus, Web of Science, CINAHL Plus, Dialnet Plus, Eric and Cuiden Plus.
REVIEW METHODS: In total, 6572 studies published from 2008 until 2018 were examined. The Critical Appraisal Skills Program was used to assess the quality of the studies included in the review. The findings were synthesized using meta-aggregation.
RESULTS: Seventeen studies were included in this systematic review, representing a sample of 606 nursing students. Simulation methods were most common among the educational programs analyzed. The analysis of qualitative data allowed us to identify 260 illustrations which were grouped into 14 categories and three themes: feelings and emotions during the performance of the pedagogical activity, end-of-life education among nursing students and competencies acquired on death and end-of-life. The most highlighted communication skills were learning to listen and building confidence to speak with the patient, family and the general public.
CONCLUSIONS: End-of-life programs generally helped students acquire communication skills, learn concepts and improve the administration of this type of care. In addition, they perceived the experience as an opportunity to learn more about oneself, gain trust and support critical thinking. Nonetheless, the evidence available in this field is limited due to the small number of studies, plus the limited data reported. Thus, further studies on this subject are necessary.
In the last six months of life, 30% of Medicare beneficiaries use the skilled nursing facility (SNF) benefit for post-acute care after a hospital stay. Frequently, the circumstances that indicate a need for SNF care are the same as those of a worsening illness trajectory such as functional decline and falls, unstable health conditions, and pain and other symptoms. The following case example and narrative discussion describes the national implications of this issue and the need for Medicare policy changes that allow for concurrent rehabilitative care and hospice services.
Objective: Patients in the last year of life experience medical emergencies which may lead to an emergency attendance by ambulance clinicians and some patients having a transfer to hospital even when this is unwanted by patients, carers or professionals. Here we report the patient characteristics and outcomes of a 24-hour hospice nursing telephone advice service to support an ambulance service.
Method: An evaluation of the outcomes of ambulance calls to a nursing telephone advice service for people living in northwest London, UK, attended at home during a 6-month period by the London Ambulance Service, whose clinicians then sought advice from the hospice’s 24 hours’ telephone line.
Results: Forty-five attendances of 44 acutely ill people with palliative care needs resulted in a telephone call. Thirteen patients (30%) were male and the median age was over 80 years. Thirty-two attendances (71%) were managed without a transfer to hospital, with telephone advice from the hospice and in some cases arrangements for another clinician to visit. Seven attendances (16%) resulted in a transfer to hospital, of which at least five led to an admission. Six attendances (13%) resulted in a notification of the patient’s death.
Conclusions: This preliminary study shows the feasibility, outcomes and acceptability of telephone advice to support ambulance clinicians attending patients with palliative care needs. The service was associated with low rates of subsequent transfer to hospital. Further controlled research is needed to assess the clinical and cost-effectiveness of the service.