Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
INTRODUCTION: An Advance Healthcare Directive (AHD) is a written document that contains a patient-in-care's will and preferences concerning the treatment options available to them, should they lack decision-making capacity. AHDs are completed within a broader framework known as Advance Care Planning. No study has explored the viewpoint of Spanish mental healthcare professionals towards AHDs.
AIM: To explore the viewpoint of mental health professionals towards the implementation of AHDs in mental health.
METHOD: A qualitative study was conducted using semi-structured interviews that were thematically analysed.
FINDINGS: Three main themes were identified: care planning culture; barriers for the practical management of AHDs; and reasons to not honour patient-in-care AHDs.
DISCUSSION: Professionals find it pragmatically difficult to stop applying traditional paternalistic practices. To implement AHDs, improving the knowledge and awareness of AHDs and management of non-technical skills through training is required. Such training should include users and families and allow for compliance with United Nations requirements.
IMPLICATIONS FOR PRACTICE: AHDs offer important information regarding user preferences, although they pose challenges for practices. Acquiring an up-to-date perspective on the attitudes of professionals towards AHDs allows organizations to attend to particular aspects that require reinforcement. Wider awareness, staff training, and new ways of relating to users are necessary to implement AHDs in Spanish context.
RELEVANCE STATEMENT: A better understanding of the attitudes of Spanish mental health professionals towards AHDs was achieved. Despite the implementation of AHDs being an important and potentially beneficial initiative, mental health professionals find many pragmatic issues that need addressing before AHDs become a reality in their clinical practice. Wider awareness, staff training, personalized assistance and new ways of relating to users are required to implement AHDs in everyday practice.
Aim: To develop and implement a region wide skills matrix for palliative care and district nurses in rural Victoria in order to identify and address individual learning needs and appropriate professional development strategies based on the Australian National Palliative Care Standards. This study is the first in a series of papers discussing and evaluating the development and implementation of a skills matrix. Future papers will report on participants’ data reporting.
Methods: The development and implementation of a skills matrix for palliative care nurses was based on using several evidence-based strategies involving four main stages. There were: stakeholder consultation, collaboration, consolidation and implementation. The initial stage of development of the matrix involved consultation with regional stakeholders to establish and refine the project objectives. The second stage involved collection of information from regional stakeholders; brainstorming and discussion of the technical skills required for palliative care and the cross over with district nursing. The third stage involved a facilitated process whereby action plans were devised and the final stage involved a plan for the survey dissemination and evaluation of the training needs. Other evidence-based strategies used were Benner’s theoretical model of clinical competence, the Australian National Palliative Care Standards and the triple C model of project implementation.
Results: This study reported on the development and implementation of a self-assessment of competencies skills matrix for nurses working in palliative care based on the Australian National Standards of palliative care used by services. The matrix included all the aspects covered by the Australian National Palliative Care Standards and mapped them to various competencies using Benner’s model ranging from novice to expert. The availability of a skills matrix tool to self-assess is important to keep track of the clinical competencies gained by palliative care nurses. Targeted educational interventions identified by the skills matrix have the potential to improve quality of care provided in the palliative care setting.
Conclusion: The successful development and implementation of the palliative skills matrix across the Gippsland region relied on using several evidence-based strategies to standardise the competencies across the palliative care setting in rural Victoria, Australia. Examples of these strategies included using Benner’s theoretical competency model, the Australian National Palliative Standards and the triple C model, which included stakeholders’ consultation, collaboration and consolidation.
Les stages sont des temps forts dans le parcours de professionnalisation des étudiants en soins infirmiers. Ils constituent des moments d’apprentissage privilégiés dans le prolongement des enseignements théoriques. En fin de formation, le stage de projet professionnel de huit semaines au minimum permet une immersion forte. Témoignage d’une étudiante en pleine découverte de la culture palliative.
Aims and objectives: To explore how community nurses (CNs) experience the collaboration with general practitioners (GPs) and specialist palliative home care team (PHCT) nurses in palliative home care and the perceived factors influencing this collaboration.
Background: The complexity of, and the demand for palliative home care is increasing. Primary palliative care is provided by CNs and GPs, often in collaboration with PHCT nurses. Although these professionals may each individually be part of a fixed team, a new temporary team is often composed for every new palliative patient. These membership changes, referred to as team membership fluidity, challenge professionals to work effectively.
Design and methods: A qualitative research design, using semi-structured interviews with CNs. Participant selection happened through regional palliative care networks in Belgium. The network's PHCT nurses selected CNs with whom they recently collaborated. Twenty interviews were conducted. A constant comparative analysis approach was used. COREQ guidelines were followed.
Results: Formal interprofessional team meetings were not common practice. The other's approachability and knowing each other positively influenced the collaboration. Time constraints, the GPs' lack of expertise, communication style, hierarchy perception and income dependency negatively influenced the collaboration with GPs and determined PHCT nurses' involvement. The coping strategies of CNs balanced between a behaviour focused to the patient and to the professional relationship. Specialist PHCT nurses were relied upon for their expertise but also to mediate when CNs disagreed with GPs.
Conclusion: Community nurses showed to be highly adaptable within the fluid team. Strikingly, dynamics described in the doctor-nurse game 50 years ago are still present today and affect the interprofessional communication. Interprofessional education interventions can contribute to improved interprofessional collaboration.
Relevance to clinical practice: The study findings uncovered critical knowledge gaps in interprofessional collaboration in palliative home care. Insights are relevant for and related to professional wellbeing and workplace learning.
Background: An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden.
Methods: This study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9) and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework.
Results: With the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity.
Conclusions: As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
Background: Palliative care (PC) improves the quality of life of patients with advanced cancer. Our aim was to describe PC referral among patients with advanced cancer, and associated outcomes in an academic medical centre.
Methods: We reviewed the medical records of 536 inpatients with cancer who had died in 2010. Our retrospective study compared patients who accessed PC services with those who did not. Statistical analysis was conducted using non-parametric tests due to non-normal distribution. We also conducted a multivariate analysis using a logistic regression model including age, gender, type of cancer and metastatic status.
Results: Out of 536 patients, 239 (45%) had PC referral. The most common cancer types were respiratory (22%) and gastrointestinal (19%). Patients with breast cancer (OR 23.76; CI 6.12 to 92.18) and gynaecological cancer (OR 7.64; CI 2.61 to 22.35) had greater PC access than patients with respiratory or haematological cancer. Patients referred to PC had significantly less chemotherapy in the last 2 weeks of life than non-referred patients, with 22 patients (9%) vs 59 (19%; p<0.001). PC-referred patients had significantly fewer admissions to intensive care units in the last month of life than non-referred patients, with 14 (6%) vs 58 (20%; p<0.001).
Conclusions: There was a large variation in access to PC according to the type of cancer. There is a need to improve collaboration between the PC service and the respiratory, cancer and haematology specialists. Further research will be required to determine the modality and the impact of this collaboration.
Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.
Objective: To understand the psychological processes involved in the experiencing of suffering at the end phase of life.
Methods: Semistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.
Results: 5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.
Conclusion: The findings may inform the development of mechanism-based interventions in the palliation of suffering.
BACKGROUND: Health care providers should be able to provide good quality end-of-life care. A tool to evaluate the positive and negative consequences of caring for dying patients is warranted.
AIM: The aim of this study was to evaluate the psychometric properties of the Persian version of the End-of-Life Caregiving Experience Appraisal Scale (EOLCAS).
METHODS: This research was conducted in two phases. Phase I: The World Health Organization Protocol of forward-backward translation and an expert panel in order to determine face and content validity. Phase II: Survey development with 310 nurses who worked in critical care units, construct validity (construct, convergent and divergent validity), internal consistency (average inter-item correlation, Cronbach's alpha and McDonald's omega) and construct reliability were evaluated.
RESULTS: The exploratory factor analysis showed that the present scale (Persian version) has four factors: Negative physical-emotional and social consequences, transcendental communication, information deficits and future rumination, which explained 83·92% of the overall extracted variance. Convergent and divergent validity were confirmed for all factors. The internal consistency and construct reliability were acceptable.
CONCLUSION: The scale has a multidimensional concept that is sufficiently reliable and the use of the scale would be helpful in measuring consequences of caring for dying patients.
RELEVANCE TO CLINICAL PRACTICE: This scale makes a significant contribution in that it helps in the recognition of positive and negative consequences of critical care nurses' caring for dying patients.
BACKGROUND: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised.
OBJECTIVE: This study aimed to explore nurses' experiences of compassion when caring for palliative patients in home nursing care.
DESIGN AND PARTICIPANTS: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway.
ETHICAL CONSIDERATIONS: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data.
FINDINGS: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient's plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes.
DISCUSSION: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content.
CONCLUSION: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient - and a nurse perspective.
BACKGROUND: Medical Assistance in Dying, also known as euthanasia or assisted suicide, is expanding internationally. Canada is the first country to permit Nurse Practitioners to provide euthanasia. These developments highlight the need for nurses to reflect upon the moral and ethical issues that euthanasia presents for nursing practice.
PURPOSE: The purpose of this article is to provide a narrative review of the ethical arguments surrounding euthanasia in relationship to nursing practice.
METHODS: Systematic search and narrative review. Nine electronic databases were searched using vocabulary developed from a stage 1 search of Medline and CINAHL. Articles that analysed a focused ethical question related to euthanasia in the context of nursing practice were included. Articles were synthesized to provide an overview of the literature of nursing ethics and euthanasia.
ETHICAL CONSIDERATIONS: This review was conducted as per established scientific guidelines. We have tried to be fair and respectful to the authors discussed.
FINDINGS: Forty-three articles were identified and arranged inductively into four themes: arguments from the nature of nursing; arguments from ethical principles, concepts and theories; arguments for moral consistency; and arguments from the nature of the social good. Key considerations included nursing's moral ontology, the nurse-patient relationship, potential impact on the profession, ethical principles and theories, moral culpability for acts versus omissions, the role of intention and the nature of the society in which euthanasia would be enacted. In many cases, the same assumptions, values, principles and theories were used to argue both for and against euthanasia.
DISCUSSION: The review identified a relative paucity of literature in light of the expansion of euthanasia internationally. However, the literature provided a fulsome range of positions for nurses to consider as they reflect on their own participation in euthanasia. Many of the arguments reviewed were not nursing-specific, but rather are relevant across healthcare disciplines. Arguments explicitly grounded within the nature of nursing and nurse-patient relationships warrant further exploration.
In the past, palliative care has been primarily cancer focused, and more recently the scope of care has broadened to include other life-limiting illnesses. With increasing incidence of multiple comorbidities amongst palliative care patient populations, it is less certain whether access to, and treatment within, palliative care settings are adequate for those who have pre-existing serious and persistent mental illnesses. This paper explores the key concepts of palliative care for people with serious and persistent mental illness (SPMI), the challenges present in nursing practice, and the making of end-of-life decisions, in order to consider how comprehensive, person-centred care might be given. Although some improvements have been reported over the past 14 years, this population appears to remain underserved in palliative care. The need for more specialized education for nurses in both palliative care and mental health care, and better communication and collaboration between the two specialities is needed. Greater collaboration between disciplines may ensure that these patients receive the same standard of care experienced by the general population.
Canada's legalization of Medical Assistance in Dying (MAiD) in 2016 has had important implications for nursing regulators. Evidence indicates that registered nurses perform key roles in ensuring high-quality care for patients receiving MAiD. Further, Canada is the first country to recognize nurse practitioners as MAiD assessors and providers. The purpose of this article is to analyze the documents created by Canadian nursing regulatory bodies to support registered nurse and nurse practitioner practice in the political context of MAiD. A search of Canadian provincial and territorial websites retrieved 17 documents that provided regulatory guidance for registered nurses and nurse practitioners related to MAiD. Responsibilities of registered nurses varied across all documents reviewed but included assisting in assessment of patient competency, providing information about MAiD to patients and families, coordinating the MAiD process, preparing equipment and intravenous access for medication delivery, coordinating and informing health care personnel related to the MAiD procedure, documenting nursing care provided, supporting patients and significant others, and providing post death care. Responsibilities of nurse practitioners were identified in relation to existing legislation. Safety concerns cited in these documents related to ensuring that nurses understood their boundaries in relation to counseling versus informing, administering versus aiding, ensuring safeguards were met, obtaining informed consent, and documenting. Guidance related to conscientious objection figured prominently across documents. These findings have important implications for system level support for the nursing role in MAiD including ongoing education and support for nurses' moral decision making.
OBJECTIVE: to identify, in scientific productions, nursing interventions in palliative care in children and adolescents with cancer.
METHOD: integrative review of the literature through the databases: CINAHL, MEDLINE, IBECS, LILACS and SCIELO, carried out in October and November 2017.
RESULTS: we analyzed 18 articles that met the inclusion criteria. The results showed that, among the articles selected, Brazil is the country with the largest number of publications and that interventions such as music therapy, massage, ludic application, early consultation of palliative care, social interventions and physical exercises aimed at the resolution of a specific symptom obtained better results when compared to interventions that aimed at the comprehensiveness of palliative care.
FINAL CONSIDERATION: we conclude that greater emphasis should be given to palliative care in academic and professional training and that further studies in search of the best evidence should be conducted to support nursing Evidence-Based Practices.
OBJECTIVE: To select outcomes and indicators of the Nursing Outcomes Classification (NOC), in order to assess patients with cancer under palliative care with Acute and Chronic Pain Nursing Diagnoses; and to construct the conceptual and operational definitions of the indicators.
METHOD: Expert opinion study and literature review. The sample consisted of 13 experts. The data collection was in own tool applied in face-to-face meeting and by e-mail. In the analysis of the data, it was considered between 75% and 100% of agreement.
RESULTS: Eight outcomes and 19 indicators were selected. The results with higher scores were Pain Level, Pain Control and Client Satisfaction: Pain Management. For all indicators selected, conceptual and operational definitions were constructed.
CONCLUSION: The selection of results and priority indicators for the assessment of pain in palliative care, as well as the construction of its definitions, will support clinical practice.
Nurse educators have a unique role to prepare nursing students for all aspects of patient and family care, from birth through death. Knowing that death is inevitable is not the challenge. Preparing nursing students to cope with death and address personal and community myths about death and dying are the challenges. Opportunities for students to examine personal and community associations with death are essential for nursing students preparing to enter the field. Biophysiological processes and treatment protocols are an essential part of each course; however, one course in a Department of Nursing in a small university in the Midwestern United States provides students the opportunity to reflect on death and dying and includes the experience of creating a tangible symbol to “hold on to” as they professionally and thoughtfully work with dying patients and their families, as well as cope with their own experiences of loss and grief in their careers.
BACKGROUND: Research on nurses' perceptions of dignity is limited, with much work instead focusing on patients' experiences. Maintaining the dignity of patients is considered to be an important element of nursing care; however, it is often diminished by the acts and omissions of healthcare providers.
OBJECTIVES: The purposes of this study were to understand oncology nurses' perceptions of care that supports patients' dignity during end-of-life hospitalization and to propose a theoretical foundation consistent with these perceptions as a guide to practice.
METHODS: A qualitative study using grounded theory was employed. Semistructured interviews with 11 experienced female oncology nurses generated insights into their perceptions of dignity in caring for terminally ill patients. Data were analyzed using the constant comparative method until data saturation was reached.
FINDINGS: This study revealed an emerging model for dignity care that uses communication, support, and facilitation in the education of nurses during end-of-life care. The proposed model could enhance the facilitation of nursing education and aid in the design of nursing course curricula and practical experiences that may improve nurses' ability to provide care supporting dignity.
Oncology nursing is a rewarding, challenging, and ever-changing specialty. Oncology affords the nurse an opportunity to care for individuals with unique, complex issues during his or her cancer journey. I assumed that, at some point, I would care for a patient who may not have a positive outcome. It became clear to me that I would be there during the dying process and, subsequently, face issues related to the death of a patient. I really thought I knew what I was getting into; however, I now understand that I was not sufficiently prepared.