Dead on the table: A theoretical expansion of the vicarious trauma that operating room clinicians experience when their patients die.

The practice of operating room (OR) clinicians - nurses, surgeons, and anesthetists - is fundamentally about preserving life. Some patients, however, die in the OR. Clinicians are therefore vulnerable to moral and emotional trauma. In this paper, we discuss three forces that shape clinicians' moral and emotional experiences in OR care: biomedical values, normative death discourse, and socially (un)sanctioned grief. We suggest how each of these forces increases clinicians' vulnerability to feel traumatized when their patients die. We hope this discussion will stimulate clinicians and researchers to engage with social and cultural determinants of clinicians' experiences when patients die.

End-of-life care decisions for haemodialysis patients - 'We only tend to have that discussion with them when they start deteriorating'.

BACKGROUND: Haemodialysis patients receive very little involvement in their end-of-life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end-of-life care decisions. METHODS: A semi-structured qualitative interview study with 15 doctors and five nurses and thematic analysis of their accounts was conducted. The setting was a large teaching hospital in Wales, UK. RESULTS: Prognosis is not routinely discussed with patients, in part due to a difficulty in estimation and the belief that patients do not want or need this information. Advance care planning is rarely carried out, and end-of-life care discussions are seldom initiated prior to patient deterioration. There is variability in end-of-life practices amongst nephrologists; some patients are felt to be withdrawn from dialysis too late. Furthermore, the possibility and implications of withdrawal are not commonly discussed with well patients. Critical barriers hindering better end-of-life care involvement for these patients are outlined. CONCLUSIONS: The study provides insights into the complexity of end-of-life conversations and the barriers to achieving better end-of-life communication practices. The results identify opportunities for improving the lives and deaths of haemodialysis patients.

Are you SURE about your vascular access? Exploring factors influencing vascular access decisions with chronic hemodialysis patients and their nurses.

A major decision for patients with stage 5 chronic kidney disease (CKD) relates to vascular access (VA) for treatment. Patients who receive pre-dialysis care often defer making a decision, which results in initiation of hemodialysis (HD) with a central venous catheter (CVC) in an urgent or emergent situation. Little is known about how individuals make decisions around VA. In this context, a mixed-methods study was undertaken to explore uncertainty related to changing their VA from an existing CVC to a graft or fistula. Quantitative assessment was measured using the SURE tool and interviews with patients and nurses were conducted. Results revealed that none of the 16 patient participants reported uncertainty. Qualitative findings revealed that patient decisions about access were impacted by observations, experiences, and dialogue in the hemodialysis unit. Study findings have important implications including the challenge of reconciling epidemiologic population-based risk measurement to the individual patient's situation. Moreover, the SURE tool was viewed as a mechanism to open a dialogue to confirm patients' decisions and provide further education and/or support following HD initiation.

Whose choice is it? Shared decision making in nephrology care.

Patients living with end-stage renal disease (ESRD) are faced with numerous decisions across the trajectory of their illness. Shared decision making (SDM) offers a patient-centered approach to engage patients in decision making in meaningful ways. Using an SDM approach, patients and providers collaborate to make healthcare decisions by taking into account the best available empirical evidence, in conjunction with the patient's values, preferences, and individual circumstances. In this article, we outline the principles of SDM; highlight the broad range and context of decisions faced by patients living with ESRD; review decision-support interventions; and consider opportunities and challenges for implementing SDM into usual ESRD practice. A summary of current knowledge and areas for research and further investigation concludes the paper. Because nephrology team members spend a lot of time interacting with patients during treatments and follow-up care, they are well positioned to engage in SDM. Healthcare systems need innovation in communication to ensure the ethical application of important technological improvements in renal treatments, and to ensure that patient decision-support processes are available. SDM is a promising innovation to support the recalibration of care for patients living with end-stage renal disease.

Interventions for shared decision-making about life support in the intensive care unit: a systematic review.

BACKGROUND: Healthcare professionals and families make decisions about the use of life support for patients in the intensive care unit (ICU), including decisions to withhold or withdraw life support at the end-of-life. Best practice guidelines recommend using a shared decision-making (SDM) approach to improve the quality of end-of-life decision-making but do not describe how this should be done in practice. AIMS: To know what elements of SDM had been tested to improve communication between healthcare professionals, patients, and their family about the decision. Trials relevant to our review assessed whether these interventions were more effective than usual care. METHODS: A systematic review of randomized controlled trials of SDM interventions for the decision about using life support, limiting the use of life support, or withdrawing life support for hospitalized patients. We searched databases from inception to January 2011. RESULTS: Of 3,162 publications, four unique trials were conducted between 1992 and 2005. Of four trials, three interventions were evaluated. Two studies of interventions including three of nine elements of SDM did not report improvements in communication. Two studies of the same ethics consultation, which included eight of nine elements of SDM, did not evaluate the benefit to communication. The interventions were not harmful; they decreased family member anxiety and distress, shortened intensive care unit stay, but did not affect patient mortality. IMPLICATIONS FOR RESEARCH AND PRACTICE: Few studies have evaluated interventions to improve communication between healthcare professionals and patients/families when facing the decision about whether or not to use life support in the ICU. Interventions that include essential elements of SDM need to be more thoroughly evaluated in order to determine their effectiveness and health impact and to guide clinical practice.

Perspectives of significant others in dialysis modality decision-making: a qualitative study.

OBJECTIVE: To explore the experience of the dialysis modality decision-making process from the perspective of the significant other. METHODS: A qualitative interpretive description study was conducted using the Interprofessional Shared Decision Making Model (Légaré et al., 2011). Data collection included one-on-one, semi-structured interviews, the Decisional Regret Scale, and the SURE tool. RESULTS: Ten significant others were interviewed. They included wives, husbands, and daughters of dialysis patients. Their roles involved providing a positive outlook, "being with", advocating, caregiving, learning together, sharing opinions, and communicating values, preferences and treatment feasibility. Broader factors influencing significant others included choosing life, unanticipated life change, and personal health problems. Implementation of the chosen modality resulted in unanticipated events, relationship changes and challenges to travelling. CONCLUSION: Significant others play supportive roles for dialysis patients and are involved in the decision-making process associated with treatment decisions. Significant others may have concurrent emotional, informational, and physical needs that affect their role in making and/or implementing the decision.

Exploring the impact of a decision support intervention on vascular access decisions in chronic hemodialysis patients: study protocol.

BACKGROUND: In patients with Stage 5 Chronic Kidney Disease who require renal replacement therapy a major decision concerns modality choice. However, many patients defer the decision about modality choice or they have an urgent or emergent need of RRT, which results in them starting hemodialysis with a Central Venous Catheter. Thereafter, efforts to help patients make more timely decisions about access choices utilizing education and resource allocation strategies met with limited success resulting in a high prevalent CVC use in Canada. Providing decision support tailored to meet patients' decision making needs may improve this situation. The Registered Nurses Association of Ontario has developed a clinical practice guideline to guide decision support for adults living with Chronic Kidney Disease (Decision Support for Adults with Chronic Kidney Disease.) The purpose of this study is to determine the impact of implementing selected recommendations this guideline on priority provincial targets for hemodialysis access in patients with Stage 5 CKD who currently use Central Venous Catheters for vascular access. METHODS/DESIGN: A non-experimental intervention study with repeated measures will be conducted at St. Michaels Hospital in Toronto, Canada. Decisional conflict about dialysis access choice will be measured using the validated SURE tool, an instrument used to identify decisional conflict. Thereafter a tailored decision support intervention will be implemented. Decisional conflict will be re-measured and compared with baseline scores. Patients and staff will be interviewed to gain an understanding of how useful this intervention was for them and whether it would be feasible to implement more widely. Quantitative data will be analyzed using descriptive and inferential statistics. Statistical significance of difference between means over time for aggregated SURE scores (pre/post) will be assessed using a paired t-test. Qualitative analysis with content coding and identification of themes will be conducted for the focus group and patient interview data. DISCUSSION: Coupling the SURE tool with a decision support system structured so that a positive test result triggers providers to help patients through the decision-making process and/or refer patients to appropriate resources could benefit patients and ensure they have the opportunity to make informed HD access choices.

Practice change in long-term care facilities in Ontario: views of managers and staff.

Little is known about how the use of data and feedback influences change in long-term care, and that was the focus of this study. Semistructured interviews were conducted with 126 frontline staff and managers from 19 randomly selected Ontario long-term care facilities. Content analysis revealed that staff members use data for problem identification and solution finding, justifying change, and monitoring change. Frontline providers primarily provided resident-based examples of data and feedback processes, whereas managers mainly described organization-based examples. Few participants discussed how information from mandated databases and related feedback processes could be used to inform change. Knowledge gained from this study will help organizations better understand the perspectives of different team members about data and feedback, thereby informing interventions that will enhance resident outcomes and quality service delivery in long-term care.

Skills training to support patients considering place of end-of-life care: a randomized control trial.

The effect of a program to train clinicians to support patients making decisions about place of end-of-life care was evaluated. In all, 88 oncology and/or palliative care nursing and allied health providers from three Ontario health networks were randomly assigned to an education or control condition. Quality of decision support provided to standardized patients was measured before and after training, as were participants' perceptions about the acceptability of the training program and their intentions to engage in patient decision support. Compared to controls, intervention group members improved the quality of decision support provided and were more likely to address a wider range of decision-making needs. Intervention group members scored higher on a knowledge test of decision support than controls and rated the components as acceptable. Improvements in the quality of decision support can be made by providing training and practical tools such as a patient decision aid.

Developing meaningful learning experiences in palliative care nursing education.

To help nurses develop effective clinical decision-making skills, it is essential that palliative care education includes opportunities for undergraduate and practicing nurses to develop cognitive skills in addressing real-life clinical problems. This article describes the learning experiences within an elective nursing course designed to strengthen the clinical decision-making skills of students in the context of palliative care and interprofessional practice. A description of the course context, major learning assignment and evaluation rubic, and reflections on the learning process in terms of clinical decision-making and interprofessional practice provides an example of how meaningful learning opportunities can be used to prepare nurses for the challenges they will face as collaborative team members in their palliative clinical practice.

Chronic kidney disease: what's in a name?

There is a lack of precision and clarity in the terms used to describe chronic kidney disease (CKD). Inconsistent terminology is confusing for both practitioners and patients. The purpose of this article is to review and examine various terms used to label CKD and to propose an evidence-based recommendation to support the use of a standard terminology for CKD.

Efficacy of a training intervention on the quality of practitioners' decision support for patients deciding about place of care at the end of life: A randomized control trial: Study protocol.

BACKGROUND: Most people prefer home palliation but die in an institution. Some experience decisional conflict when weighing options regarding place of care. Clinicians can identify patients' decisional needs and provide decision support, yet generally lack skills and confidence in doing so. This study aims to determine whether the quality of clinicians' decision support can be improved with a brief, theory-based, skills-building intervention. THEORY: The Ottawa Decision Support Framework (ODSF) guides an evidence based, practical approach to assist clinicians in providing high-quality decision support. The ODSF proposes that decisional needs [personal uncertainty, knowledge, values clarity, support, personal characteristics] strongly influence the quality of decisions patients make. Clinicians can improve decision quality by providing decision support to address decisional needs [clarify decisional needs, provide facts and probabilities, clarify values, support/guide deliberation, monitor/facilitate progress]. METHODS/DESIGN: The efficacy of a brief education intervention will be assessed in a two-phase study. In phase one a focused needs assessment will be conducted with key informants. Phase two is a randomized control trial where clinicians will be randomly allocated to an intervention or control group. The intervention, informed by the needs assessment, knowledge transfer best practices and the ODSF, comprises an online tutorial; an interactive skills building workshop; a decision support protocol; performance feedback, and educational outreach. Participants will be assessed: a) at baseline (quality of decision support); b) after the tutorial (knowledge); and c) four weeks after the other interventions (quality of decision support, intention to incorporate decision support into practice and perceived usefulness of intervention components). Between group differences in the primary outcome (quality of decision support scores) will be analyzed using ANOVA. DISCUSSION: Few studies have investigated the efficacy of an evidence-based, theory guided intervention aimed at assisting clinicians to strengthen their patient decision support skills. Expanding our understanding of how clinicians can best support palliative patients' decision-making will help to inform best practices in patient-centered palliative care. There is potential transferability of lessons learned to other care situations such as chronic condition management, advance directives and anticipatory care planning. Should the efficacy evaluation reveal clear improvements in the quality of decision support provided by clinicians who received the intervention, a larger scale implementation and effectiveness trial will be considered. TRIAL REGISTRATION: This study is registered as NCT00614003.

A question of evidence: decision-making in palliative care nursing.

Nurses are urged to integrate research evidence into their practice. Current perspectives of evidence-based practice promote a hierarchy of empirical evidence. Notwithstanding the contribution of empirical knowledge, this approach constrains our understanding of the value and contribution of other forms of knowledge. Shifting to a model of 'evidence informed practice', where multiple forms of knowledge are considered and valued, may better reflect the complexities of end-of-life care and offer a fuller understanding of palliative care nursing best practice.

Decision coaching to support shared decision making: a framework, evidence, and implications for nursing practice, education, and policy.

BACKGROUND: Patients with values-sensitive health decisions frequently experience decisional conflict and require support. Decision coaching shows promise but little is known about the fit within the therapeutic relationship and factors influencing implementation of decision coaching in practice. AIMS: To offer an evidence-based decision coaching framework and explore implications for competency development and environmental infrastructures needed to facilitate client-centered decision coaching. METHODS: A review of the evidence and our experience supporting the development of a framework for decision coach-mediated shared decision making that outlines the roles of the primary practitioner, the patient, and decision coach for achieving high-quality health decisions. IMPLICATIONS: Competence in providing decision coaching requires knowledge and skill building at both pre- and post-licensure levels. Practice environments, regulatory bodies, educational systems, and professional and accreditation organizations are vital to successful integration of decision coaching skills into practice. Practical, visible, accessible, evidence-based, and equitably enforced regulations and policies endorsing patients' decision support interventions are essential. CONCLUSIONS: Enhancing nurses' coaching skills for supporting patients and their families in decision making can be fostered through interventions aimed at the nurses, educational systems, and regulatory organizations. Further research and pragmatic evaluation are needed to better support the acquisition and implementation of decision coaching for all types of health decisions. APPLICATION TO NURSING PRACTICE: The framework indicates the practitioner's role in diagnosing the problem, providing options, and screening for decisional conflict. Decision coaching involves assessing factors influencing patients' decisional conflict, providing support to address decisional needs, monitoring progress in decision making, and screening for factors influencing implementation. Informed patients share their values and preferences shaped by their personal situation.

A Sustainability Oriented and Mentored Approach to Implementing a Fall Prevention Guideline in Acute Care Over 2 Years.

The purpose of this study was to assess the impact of a mentored guideline implementation (Registered Nurses' Association of Ontario Prevention of Falls and Falls Injuries in the Older Adult Best Practice Guideline) focused on enhancing sustainability in reducing fall rates and number of serious falls and the experience of staff in three acute care hospitals. The National Health Service (NHS) Sustainability Model was used to guide the study. Interviews and focus groups were held with 82 point-of-care professional staff, support staff, volunteers, project leaders, clinical leaders, and senior leaders. Study results supported the importance of the factors in the NHS model for sustainability of the guideline in these practice settings. There were no statistically significant decreases in the overall fall rate and number of serious falls. The results supported strategies of participating hospitals to become senior friendly organizations and provided opportunities to enhance staff collaboration with patients and families.

Feeling like a burden: exploring the perspectives of patients at the end of life.

The issue of caregiver burden within the context of end-of-life care has received considerable attention. Less focus has been directed at the corresponding issue of care recipients' perceptions of being a burden to others, referred to as "self-perceived burden". The purpose of this interpretative phenomenological study was to gain a better understanding of self-perceived burden from the patient's perspective. Fifteen patients (ten women, five men) from Ottawa, Canada, receiving palliative care for advanced cancer were interviewed. Participants' experiences of self-perceived burden were reflected in two major interrelated categories. "Concern for Others" included the physical, social, and emotional hardships participants believed they were creating for others, as well as concerns about the future and likely effect of their death on those around them. "Implications for Self" reflected feelings of responsibility for causing hardships to others, resulting in distress and a diminished sense of self. A third category, "Minimizing Burden", was also identified, which described coping strategies used by participants to alleviate the burden on others and to reduce the negative impact on themselves. These categories and themes are discussed from the perspective of social psychology theory pertaining to the maintenance of equity in relationships.

The appropriateness of appropriate: smuggling values into clinical practice.

The word appropriate has become an institutional given, part of the clinical jargon used in discussions with and about patients and families. The authors unpack appropriate, arguing that this seemingly innocuous word has implications for clinical practice. They begin with the theoretical and historical question What does appropriate "do" in clinical discourse? The answer is both grammatical and moral, rooted in the 19th-century distinction between normal and pathological and the 20th-century medicalization of behaviour. The examination references rhetorical theory and the history of statistics and psychology, and it uses pediatric health care as an example. The authors argue that the use of the word appropriate facilitates the smuggling of values into clinical encounters, which can marginalize patients and compromise therapeutic relationships. In uncovering the discursive (moral) elements of appropriate, they challenge readers to critically reflect on how they speak to and about patients and families.

Crossing over: transforming palliative care nursing services for the 21st century.

Over the next decades, as the baby boomers age, there will be a considerable demand and need for 'end-of-life care'. At the same time, there are numerous efforts to reform health care systems with a growing emphasis on evidence-based and patient-centred care. The current dominant model of palliative nursing is not sufficient. A model of palliative care nursing service delivery nested with a chronic condition management model epitomised by collaboration, communication and values-sensitive decision support is proposed. Multiple antecedents impacting palliative care delivery for the future are explored. A description of how the conceptual framework could be used to guide implementation and evaluation of nursing services is included. Specific implications for planning and outcomes measurement are discussed.

Influenza vaccination: a call for a multiple intervention approach.

Influenza seriously impacts the health and well-being of individuals and communities and has significant implications for the health care system. Despite known benefits of influenza vaccination, inoculation rates among health care providers remain low. Close proximity to patients, the potential to act as an infection vector and their role in patient education has focussed attention on how health care professionals make personal vaccination decisions. This commentary explores the inherent complexity of vaccination decision-making and offers suggestions for a multiple intervention approach to address health care providers' vaccination uptake needs. Directions for future research are also discussed.

Women's decision-making needs regarding place of care at end of life.

Little is known about the decision-making needs of terminally ill women who are considering options for place of care at the end of life. A pilot study was conducted with a sample of 20 terminally ill women with advanced cancer to identify factors taken into consideration in making this decision. Participants were interviewed using a semistructured questionnaire incorporating the domains of quality of end-of-life care and based on the Ottawa Decision Support Framework. Results suggested a gap between the preferred (home, n = 13) and the actual (palliative care unit, n = 16) place of care. Discrepancies about place of care may be related to conflicting subjective factors such as being a burden to family versus having the opportunity to strengthen relationships with family and friends. Participants who were actively engaged in making the decision scored the highest levels of decisional conflict. Previous studies have shown an association between high decisional conflict scores and decision delay. Although findings from this small study are preliminary, they suggest that the decision regarding place of terminal care is complex with multiple competing factors being considered.