Clinical Recommendations for Improving Palliative Nursing Care for Patients With a Left Ventricular Assist Device.

Nurses who care for patients with a left ventricular assist device (LVAD) are highly skilled clinicians who manage unique technological demands and complex complications within this specialized patient population. There is a demonstrated need and benefit for palliative care for patients with a LVAD, yet palliative consults are often underused, and the quality of consultation for these patients is poorly understood. Rarely, if at all, do nurses receive formal training on how to navigate the palliative care needs of patients with a LVAD, which includes preparedness planning, caregiver support, device/body image acceptance, and end-of-life care. In addition, there is a need for literature to address specifically how nurses in their role and scope of practice can improve palliative care for patients with a LVAD. The purpose of this article was to present recommendations to equip palliative care nurses to best serve the needs of patients with a LVAD, wherein they can partner with and advance their colleagues in cardiology to improve their delivery of primary palliative care.

American Society for Pain Management Nursing and Hospice and Palliative Nurses Association Position Statement: Pain Management at the End of Life.

Fundamental to the quality of life is assisting patients in relieving pain including at the end of life. Compassionate, effective, evidence-based pain care for the dying improves the quality of life for patients and may reduce distress and complicated bereavement in the loved ones witnessing this death. However, efforts designed to mitigate the consequences of the opioid epidemic have seriously compromised pain care at the end of life. This has created an urgent need to focus on the barriers to relief, and solutions necessary to provide safe and effective pain and symptom management in this population. To that end, a committee of experts was convened by the American Society for Pain Management Nursing and the Hospice and Palliative Nursing Association. These experts reviewed the current literature, developed a draft position statement which underwent consecutive revisions. This statement was then endorsed by the respective organizations. Elucidation of barriers to effective pain control in advanced disease allows targeted interventions; including those related to clinical care, education, accessibility, and research. As nurses, we must continuously advocate for humane and dignified care, promoting ethical, effective pain and symptom management at the end of life for all.

La enfermera en los cuidados paliativos en unidades de cuidados intensivos una Teoría del Final de Vida Pacífico / The Nurse in Palliative Care in Intensive Care Units, a Peaceful End of Life Theory

Introducción: La elevada tasa de mortalidad en las Unidades de Cuidados Intensivos por enfermedades sin posibilidades terapéuticas introdujo los cuidados paliativos en este escenario. En este contexto, la labor de la enfermera se hace primordial para posibilitar a los pacientes y familiares una atención biopsicosocial y espiritual, con la promoción de una asistencia integral que debe basarse en teorías como la Teoría del Final de la Vida Pacífico. Objetivo: Conocer la actuación de la enfermera en los cuidados paliativos en la Unidad de Cuidados Intensivos a la luz del Teoría del Final de la Vida Pacífico. Métodos: Estudio con enfoque cualitativo realizado con 14 enfermeras de la Unidad de Cuidados Intensivos Inmunológica de un hospital privado de la ciudad de Salvador, Bahía, Brasil. El período de recogida de datos se realizó entre noviembre de 2018 y mayo de 2019, mediante entrevista con guion semiestructurado; se analizaron a través de la técnica de Análisis de Contenido de Bardin y se discutieron a la luz de la Teoría del Final de Vida Pacífico. Resultados: Surgieron cuatro categorías: Comprensión de las enfermeras sobre los cuidados paliativos en la unidad de cuidados intensivos. Percepción y actuación de las enfermeras en la comodidad del paciente en Cuidados Paliativos. La enfermera permite la proximidad a la familia. La enfermera permite que el paciente esté en paz. Conclusión: La actuación de la enfermera en cuidados paliativos se dirige a los cuidados terminales e implica en promover el confort, acciones de aproximación familiar y actitudes que dignifiquen el proceso de morir(AU)

Introduction: The high mortality rate in intensive care units due to diseases without therapeutic possibilities introduced palliative care in this setting. In this context, the nurse's work becomes paramount to enable patients and families a biopsychosocial and spiritual care, with the promotion of a comprehensive care that should be based on theories such as the peaceful end of life theory. Objective: To know the nurse's performance in palliative care in the intensive care unit under the peaceful end of life theory. Methods: A study with a qualitative approach was carried out with fourteen nurses from the immunological intensive care unit of a private hospital Salvador City, Bahia, Brazil. Data collection covered the period between November 2018 and May 2019, using the semistructured interview. They were analyzed through Bardin's content analysis technique and discussed under the peaceful end of life theory. Results: Four categories emerged: nurses' understanding of palliative care in the intensive care unit, nurses' perception and performance concerning patient comfort in palliative care, the nurse allows proximity to the family, and the nurse allows the patient to be at peace. Conclusion: The nurse's performance in palliative care is directed to terminal care and involves promoting comfort, family approach actions and attitudes that dignify the dying process(AU)

What Variables Contribute to the Achievement of a Preferred Home Death for Cancer Patients in Receipt of Home-Based Palliative Care in Canada?

BACKGROUND: Home is often deemed to be the preferred place of death for most patients. Knowing the factors related to the actualization of a preferred home death may yield evidence to enhance the organization and delivery of healthcare services. OBJECTIVE: The objectives of this study were to measure the congruence between a preferred and actualized home death among cancer patients in receipt of home-based palliative care in Canada and explore predictors of actualizing a preferred home death. METHODS: A longitudinal prospective cohort design was conducted. A total of 290 caregivers were interviewed biweekly over the course of patients' palliative care trajectory between July 2010 and August 2012. Cross-tabulations and multivariate analyses were used in the analysis. RESULTS: Home was the most preferred place of death, and 68% of patients who had voiced a preference for home death had their wish fulfilled. Care context variables, such as living with others and the intensity of home-based nursing visits and hours of care provided by personal support workers (PSW), contributed to actualizing a preferred home death. The intensity of emergency department visits was associated with a lower likelihood of achieving a preferred home death. CONCLUSIONS: Higher intensity of home-based nursing visits and hours of PSW care contribute to the actualization of a preferred home death. IMPLICATIONS FOR PRACTICE: This study has implications for policy decision-makers and healthcare managers. Improving and expanding the provision of home-based PSW and nursing services in palliative home care programs may help patients to actualize a preferred home death.

When and how clinical nurses adjust nursing care at the end-of-life among patients with cancer: Findings from multiple focus groups.

PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives. METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts. RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged. CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.

Telling their story: A qualitative descriptive study of the lived experience of expatriate palliative care nurses in the United Arab Emirates.

PURPOSE: To explore the experiences of expatriate nurses caring for Muslim patients near end-of-life in a palliative care unit in the United Arab Emirates. METHODS: A qualitative descriptive study, with data collected through semi structured individual interviews with nine expatriate nurses working in a palliative care unit in one hospital in the United Arab Emirates. Thematic analysis of the data transcripts used a structured inductive approach. RESULTS: Analysis of the interview transcripts yielded three themes. First, language was a significant barrier in end-of-life care but was transcended when nurses practiced authentically, using presence, empathetic touch and spiritual care. Secondly, relationships between nurses, patients and families were strengthened over time, which was not always possible due to late presentation in the palliative care unit. Finally, nurses were continually in discussions with physicians, families and other nurses, co-creating the meaning of new information and experiences within the hospital policy context. CONCLUSION: For expatriate nurses, palliative nursing in a Muslim middle eastern country is complex, requiring nurses to be creative in their communication to co-create meaning in an emotionally intensive environment. Like other palliative care settings, time can strengthen relationships with patients and their families, but local cultural norms often meant that patients came to palliative care late in their disease trajectory. Preparing expatriate nurses for work in specialist palliative care settings requires skill development in advanced communication and spiritual practices, as well as principles of palliative care and tenets of Muslim culture.

Nurses' decision-making about cancer patients' end-of-life skin care in Wales: an exploratory mixed-method vignette study protocol.

INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated. METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer. ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.

Managing delirium in terminally ill patients: perspective of palliative care nurse specialists.

Delirium occurs frequently at end of life. Palliative care clinical nurse specialists (CNSs) are involved in community palliative care provision. Many patients prefer being cared for at home, yet managing delirium in this setting presents unique challenges, potentially resulting in emergency hospital or hospice admission. We examined the experiences and practice of palliative care CNSs managing delirium in the community; 10 interviews were undertaken. Data were analysed using the framework approach. Challenges to delirium management in the community included limited time with patients, reliance on families and access to medications. Assessment tools were not used routinely; time limited visits and inconsistent retesting were perceived barriers. Management approaches differed depending on CNSs' previous delirium education. Strategies to prevent delirium were not used. Community delirium management presents challenges; support surrounding these could be beneficial. Routine assessment tool use and delirium prevention strategies should be included in further education and research.

Breast cancer nursing interventions and clinical effectiveness: a systematic review.

OBJECTIVES: To examine the effects of nurse-led interventions on the health-related quality of life, symptom burden and self-management/behavioural outcomes in women with breast cancer. METHODS: Cochrane Controlled Register of Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and Embase databases were searched (January 1999 to May 2019) to identify randomised controlled trials (RCTs) and controlled before-and-after studies of interventions delivered by nurses with oncology experience for women with breast cancer. Risk of bias was evaluated using the revised Cochrane risk-of-bias tool for randomised trials. Intervention effects were synthesised by cancer trajectory using The Omaha System Intervention Classification Scheme. RESULTS: Thirty-one RCTs (4651 participants) were included. All studies were at risk of bias mainly due to inherent limitations such as lack of blinding and self-report data. Most studies (71%; n=22) reported at least one superior intervention effect. There were no differences in all outcomes between those who receive nurse-led surveillance care versus those who received physical led or usual discharge care. Compared with control interventions, there were superior teaching, guidance and counselling (63%) and case management (100%) intervention effects on symptom burden during treatment and survivorship. Effects of these interventions on health-related quality of life and symptom self-management/behavioural outcomes were inconsistent. DISCUSSION: There is consistent evidence from RCTs that nurse-led surveillance interventions are as safe and effective as physician-led care and strong evidence that nurse-led teaching, guidance and counselling and case management interventions are effective for symptom management. Future studies should ensure the incorporation of health-related quality of life and self-management/behavioural outcomes and consider well-designed attentional placebo controls to blind participants for self-report outcomes. PROTOCOL REGISTRATION: The International Prospective Register of Systematic Reviews (PROSPERO): CRD42020134914).

"To live until you die could actually include being intimate and having sex": A focus group study on nurses' experiences of their work with sexuality in palliative care.

AIMS AND OBJECTIVES: To examine nurses' experiences of working with issues of sexuality in palliative care. BACKGROUND: Sexuality has value for human lives and relations and is important for one's overall well-being throughout life. Guidelines for palliative care state that sexuality should be addressed. Previous research shows that the inclusion of sexuality in general health care is deficient, and there is a knowledge gap on how sexuality is addressed in palliative care. METHOD: Within a qualitative design, the empirical material was obtained through three focus group interviews with eleven registered nurses working in palliative care. The interviews were analysed using qualitative content analysis. RESULT: Nurses experience that sexuality has an indistinct place in their work, "sexuality" is a word difficult to use, and differing views are held on whether it is relevant to address sexuality, and if so, when? Although they have experiences involving patient and partner sexuality, which is viewed as sexuality in transformation during the palliative care process, nurses seldom explicitly address patient or partner sexuality. Despite the lack of knowledge, routines and organisational support, they acknowledge the importance of addressing sexuality in palliative care, as they express that they want to do right. CONCLUSION: Overall, nurses appear to follow differing cultural, interpersonal and intrapsychic scripts on sexuality rather than knowledge-based guidelines. This underlines the importance of managers who safeguard the adherence to existing palliative care guidelines where sexuality is already included. In this work, it is important to be aware of norms to avoid excluding patients and partners that differ from the nurses themselves as well as from societal norms on sexuality. RELEVANCE TO CLINICAL PRACTICES: The results can be used as a point of departure when implementing existing or new guidelines to include and address sexuality and sexual health needs in palliative care.

Embedded palliative care for patients with metastatic colorectal cancer: a mixed-methods pilot study.

PURPOSE: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer. METHODS: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed. RESULTS: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer. CONCLUSIONS: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.

Nurses' experiences of providing nonpharmacological pain management in palliative care: A qualitative study.

AIM AND OBJECTIVES: To explore the experiences and views of nurses who provide nonpharmacological therapies for chronic pain management in palliative care. BACKGROUND: Nursing expertise in palliative care is essential in providing pain relief to patients with chronic diseases. Examinations of the use of nonpharmacological therapies for chronic pain management in palliative care have revealed what nonpharmacological therapies have been used, but there is insufficient knowledge regarding nurses' attitudes, views and experiences regarding pain therapies in this context. DESIGN: A qualitative descriptive design was chosen. METHODS: Data were collected through individual interviews in a purposive sample with 15 nurses to ensure maximum variation. The data were analysed using qualitative content analysis. This study aligns with the consolidated criteria for reporting qualitative research (COREQ) checklist. RESULTS: The analysis yielded four categories, as follows: "building and sustaining favourable therapeutic relationships" involved the creation of trust and a solid relationship; in "recognising the diversity of patients' needs," person-centred care is expressed as being vital for individualised nonpharmacological pain management; "incorporating significant others" describes how nurses can help to ease the patient's pain by identifying positive encounters with family members or friends; and in "recognising the existence of barriers," nurses highlight vulnerable groups such as children, for whom nurses require special education to enable optimal nonpharmacological pain management. CONCLUSION: The unique knowledge that nurses gain about the patient through the nurse-patient relationship is central and crucial for successful nonpharmacological pain management. RELEVANCE TO CLINICAL PRACTICE: This study emphasises the need for nurses to get to know their patient and to be open and sensitive to patients' descriptions of their unique life situations, as this provides the necessary knowledge for optimal care and pain management. Nurses should be encouraged and given the opportunity to attend specialised training in palliative care and pain management.

Preferences to Receive Information about Palliative Care for Adult Patients.

This research study aimed to describe preferences about factors related to receiving information regarding medical treatments and palliative care (PC) options for adult patients with a poor prognosis and/or their primary decision maker. A single-group descriptive study design and content analysis were utilized. Seven trained registered nurse (RN) study team members conducted interviews to obtain narrative data. All study participants preferred to learn PC services earlier in the illness trajectory and desired to learn about this service from nurses. Most reported a desire to have spouses and family involved in decisions about PC. Nearly all wanted to understand PC options ahead of time should treatment not go as planned.

Israeli Nurses' Palliative Care Knowledge, Attitudes, Behaviors, and Practices.

OBJECTIVES: To describe and compare self-perceived end-of-life (EOL) knowledge, attitudes, behaviors, and practices of intensive care unit (ICU) nurses compared to oncology nurses. SAMPLE & SETTING: 126 Israeli nurses (79 oncology nurses and 47 ICU nurses) who were members of the Israel Association of Cardiology and Critical Care Nurses and the Israeli Oncology Nurses Organization. METHODS & VARIABLES: This cross-sectional study used an online survey to gather demographic information, clinical setting, and study measures (EOL knowledge, attitudes, behaviors, and practices). RESULTS: Oncology nurses and ICU nurses showed moderate levels of self-perceived knowledge and attitudes toward palliative care; however, their self-reported behaviors were low. Oncology nurses scored slightly higher than ICU nurses on knowledge and attitudes but not behaviors, although the difference was not statistically significant. IMPLICATIONS FOR NURSING: Contrary to the current authors' expectations, oncology nurses and ICU nurses have similar levels of knowledge, attitudes, and behaviors regarding palliative care. Nurses in both settings need to be better trained and empowered to provide such care.

Personal narratives of nurses who care for patients at the end of life.

BACKGROUND: Little attention has been paid to the ways in which nurses personally experience, understand and assign meaning to providing palliative care. AIM: A qualitative study of four nurses working with patients in the terminal phase in a hospital in Mexico was conducted to understand their lived professional experiences and relationships with death. METHODS: Four interviews were analysed using the Greimasian actantial-semiotic model. Actants were categorised by narrative role and their actions were analysed. The grammatical features of the narration were also examined. FINDINGS: Nurses sought a good death for the patient, which they typically achieved, and spiritual peace for themselves, which they often did not. Nurses placed a high value on personal, social and professional recognition for their work. The philosophical themes affecting nursing as a vocation that emerged included life and death, truth and honesty and the role of God and the family. These professional values were often contradictory, and these dilemmas should be addressed in professional training and support.

Nursing home hospital transfers in the terminally ill: night shift nurses matter!

BACKGROUND: French demographic projection expects an increasing number of older, dependent patients in the next few years. A large proportion of this population lives in nursing homes and their transfer to hospitals at the end of life is an ongoing issue. OBJECTIVE: This study explored the factors influencing the transfer of patients living in nursing homes to hospital at the end of life. DESIGN: We used a mixed-methods questionnaire developed by an expert group and assessing different characteristics of the nursing homes. PARTICIPANTS: All the nursing homes in the Rhône-Alpes area (n=680) were surveyed. RESULTS: We obtained 466 (68%) answers. We found that a palliative care programme was present in 336 (72%) nursing homes. The majority had a coordinating physician 428 (82%) and a mean number of 6 nurses for 83 beds, with 83 (18%) having a night shift nurse. There was a mean number of 19 deaths per nursing home during the recorded year. The main cause of death was dementia (41%), cancer-related death (13%). Death occurred mostly in the nursing home (14 74%). Night shift nurse attendance was significantly associated with the place of death: 27 deaths occurred in nursing homes with a night shift nurse versus 12 in those without one (p<0001). CONCLUSIONS: The location of the death of frail elderly patients is a major health issue that needs to be addressed. Our results suggests that the presence of a night shift nurse decreases the number of emergency transfers and deaths in the hospital.

Exploratory analyses of the Danish Palliative Care Trial (DanPaCT): a randomized trial of early specialized palliative care plus standard care versus standard care in advanced cancer patients.

BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials. OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT). METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve. RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item 'overall satisfaction with the help received from the health care system' with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05). CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group. TRIAL REGISTRATION: NCT01348048.

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study.

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.