Factors influencing communication and decision-making about life-sustaining technology during serious illness: A qualitative study

© 2016, BMJ Publishing Group. All rights reserved. Objectives: We aimed to identify factors influencing communication and decision-making, and to learn how physicians and nurses view their roles in deciding about the use of life-sustaining technology for seriously ill hospitalised patients and their families. Design: The qualitative study used Flanagan\u27s critical incident technique to guide interpretive description of open-ended in-depth individual interviews. Setting: Participants were recruited from the medical wards at 3 Canadian hospitals. Participants: Interviews were completed with 30 healthcare professionals (9 staff physicians, 9 residents and 12 nurses; aged 25-63 years; 73% female) involved in decisions about the care of seriously ill hospitalised patients and their families. Measures: Participants described encounters with patients and families in which communication and decision-making about life-sustaining technology went particularly well and unwell (ie, critical incidents). We further explored their roles, context and challenges. Analysis proceeded using constant comparative methods to form themes independently and with the interprofessional research team. Results: We identified several key factors that influenced communication and decision-making about life-sustaining technology. The overarching factor was how those involved in such communication and decision-making (healthcare providers, patients and families) conceptualised the goals of medical practice. Additional key factors related to how preferences and decision-making were shaped through relationships, particularly how people worked toward \u27making sense of the situation\u27, how physicians and nurses approached the inherent and systemic tensions in achieving consensus with families, and how physicians and nurses conducted professional work within teams. Participants described incidents in which these key factors interacted in dynamic and unpredictable ways to influence decision-making for any particular patient and family. Conclusions: A focus on more meaningful and productive dialogue with patients and families by (and between) each member of the healthcare team may improve decisions about life-sustaining technology. Work is needed to acknowledge and support the non-curative role of healthcare and build capacity for the interprofessional team to engage in effective decision-making discussions

Validating a conceptual model for an inter-professional approach to shared decision making: a mixed methods study

Rationale, aims and objectives Following increased interest in having inter-professional (IP) health care teams engage patients in decision making, we developed a conceptual model for an IP approach to shared decision making (SDM) in primary care. We assessed the validity of the model with stakeholders in Canada. Methods In 15 individual interviews and 7 group interviews with 79 stakeholders, we asked them to: (1) propose changes to the IP-SDM model; (2) identify barriers and facilitators to the model’s implementation in clinical practice; and (3) assess the model using a theory appraisal questionnaire.We performed a thematic analysis of the transcripts and a descriptive analysis of the questionnaires. Results Stakeholders suggested placing the patient at its centre; extending the concept of family to include significant others; clarifying outcomes; highlighting the concept of time; merging the micro, meso and macro levels in one figure; and recognizing the influence of the environment and emotions. The most common barriers identified were time constraints, insufficient resources and an imbalance of power among health professionals. The most common facilitators were education and training in inter-professionalism and SDM, motivation to achieve an IP approach to SDM, and mutual knowledge and understanding of disciplinary roles. Most stakeholders considered that the concepts and relationships between the concepts were clear and rated the model as logical, testable, having clear schematic representation, and being relevant to inter-professional collaboration, SDM and primary care. Conclusions Stakeholders validated the new IP-SDM model for primary care settings and proposed few modifications. Future research should assess if the model helps implement SDM in IP clinical practice

An emerging field of research: challenges in pediatric decision making

There is growing interest in pediatric decision science, spurred by policies advocating for children's involvement in medical decision making. Challenges specific to pediatric decision research include the dynamic nature of child participation in decisions due to the growth and development of children, the family context of all pediatric decisions, and the measurement of preferences and outcomes that may inform decision making in the pediatric setting. The objectives of this article are to describe each of these challenges, to provide decision researchers with insight into pediatric decision making, and to establish a blueprint for future research that will contribute to high-quality pediatric medical decision making. Much work has been done to address gaps in pediatric decision science, but substantial work remains. Understanding and addressing the challenges that exist in pediatric decision making may foster medical decision-making science across the age spectrum

Twelve years of clinical practice guideline development, dissemination and evaluation in Canada (1994 to 2005)

Background - Despite the growing availability of clinical practice guidelines since the early 1990's, little is known about how guideline development and dissemination may have changed over time in Canada. This study compares Canadian guideline development, dissemination, and evaluation in two six year periods from 1994–1999 and 2000–2005. // Methods - Survey of guideline developers who submitted their clinical practice guidelines to the Canadian Medical Association Infobase (a Canadian guideline repository) between 1994 and 2005. Survey items included information about the developers, aspects of guideline development, and dissemination and evaluation activities. // Results - Surveys were sent to the developers of 2341 guidelines in the CMA Infobase over the 12 year period, 1664 surveys were returned (response rate 71%). Of these, 730 unique guidelines were released from 1994–1999, and 630 were released from 2000–2005. Compared to the earlier period, more recent guidelines were being produced in English only. There has been little change in the type of organizations developing guidelines with most developed by provincial and national organizations. In the recent period, developers were more likely to report using computerized search strategies (94% versus 88%), publishing the search strategy (42% versus 34%), reaching consensus using open discussion (95% versus 78%), and evaluating effectiveness of the dissemination strategies (12% versus 6%) and the impact of the CPGs on health outcomes (24% versus 5%). Recent guidelines were less likely to be based on literature reviews (94% versus 99.6%) and were disseminated using fewer strategies (mean 4.78 versus 4.12). // Conclusion - Given that guideline development processes have improved in some areas over the past 12 years yet not in others, ongoing monitoring of guideline quality is required. Guidelines produced more recently in Canada are less likely to be based on a review of the evidence and only about half discuss levels of evidence underlying recommendations. Guideline dissemination and implementation activities have actually decreased. Unfortunately, the potential positive impact on patient health outcomes will not be realized until the recommendations are adopted and acted upon

Clarifying Values: An updated review

Background: Consensus guidelines have recommended that decision aids include a process for helping patients clarify their values. We sought to examine the theoretical and empirical evidence related to the use of values clarification methods in patient decision aids. Methods: Building on the International Patient Decision Aid Standards (IPDAS) Collaboration's 2005 review of values clarification methods in decision aids, we convened a multi-disciplinary expert group to examine key definitions, decision-making process theories, and empirical evidence about the effects of values clarification methods in decision aids. To summarize the current state of theory and evidence about the role of values clarification methods in decision aids, we undertook a process of evidence review and summary. Results: Values clarification methods (VCMs) are best defined as methods to help patients think about the desirability of options or attributes of options within a specific decision context, in order to identify which option he/she prefers. Several decision making process theories were identified that can inform the design of values clarification methods, but no single "best" practice for how such methods should be constructed was determined. Our evidence review found that existing VCMs were used for a variety of different decisions, rarely referenced underlying theory for their design, but generally were well described in regard to their development process. Listing the pros and cons of a decision was the most common method used. The 13 trials that compared decision support with or without VCMs reached mixed results: some found that VCMs improved some decision-making processes, while others found no effect. Conclusions: Values clarification methods may improve decision-making processes and potentially more distal outcomes. However, the small number of evaluations of VCMs and, where evaluations exist, the heterogeneity in outcome measures makes it difficult to determine their overall effectiveness or the specific characteristics that increase effectiveness

Evaluation of the CPR video decision aid with patients with end stage renal disease

Background: People with end stage renal disease (ESRD) face important health-related decisions concerning end-of-life care and the use of life-support technologies. While people often want to be involved in making decisions about their health, there are many challenges. People with advanced illness may have limited or wavering ability to participate fully in decision-making conversations – or lack decisional capacity for making decisions. Additionally, they may have a limited understanding of CPR and tend to receive inconsistent information on the process and outcome of CPR. Unfortunately, these discussions are often avoided. Shared decision-making approaches are an approach to overcoming these challenges. The objectives of this research was to design, test, and analyze a novel CPR video decision aid (VDA) with nephrology patients and their families in a clinical setting. Methods: The Interprofessional Shared Decision-making Model was used as a framework to guide the research. A prospective quasi-experimental design included pre/posttest measures of knowledge and confidence in decision-making, and posttest only measure of uncertainty about the decision. Results: Participant knowledge about CPR increased from a mean score of 4.8/9 (standard deviation [SD] = 1.65) before viewing the video to 7.5/9 (SD = 1.40) (p = 0.000) after viewing the video. Decisional self-efficacy improved slightly from 84% pre intervention (SD 17.04, range 20–100) to 86% after the intervention (SD 14.13, range 39–100) (p = 0.005) for patient participants. Before the intervention, most patients (43/49; 86%) had an order to have CPR in the physician orders and very few (7/49; 14%) had an order not to have CPR. Immediately after viewing the CPR-VDA and completing the values clarification worksheet, fewer 28/49 (57%) chose to have CPR, 13 (27%) chose not to have CPR and 8 (16%) were unsure. Conclusions: The CPR-VDA was feasible and acceptable to patients with ESRD, their families and the healthcare team. The CPR-VDA positively affected decision-making: improving patient and family knowledge about CPR, clarity of values, patients’ decisional self-efficacy, the congruence between documented physician’s orders and patient choice, quality of communication about CPR, while reducing decisional conflict (uncertainty) amongst patients, families, and physicians.Applied Science, Faculty ofOther UBCNon UBCNursing, School ofReviewedFacult

Parental decision making involvement and decisional conflict: a descriptive study

Background: Decisional conflict is a state of uncertainty about the best treatment option among competing alternatives and is common among adult patients who are inadequately involved in the health decision making process. In pediatrics, research shows that many parents are insufficiently involved in decisions about their child’s health. However, little is known about parents’ experience of decisional conflict. We explored parents’ perceived decision making involvement and its association with parents’ decisional conflict. Method: We conducted a descriptive survey study in a pediatric tertiary care hospital. Our survey was guided by validated decisional conflict screening items (i.e., the SURE test). We administered the survey to eligible parents after an ambulatory care or emergency department consultation for their child. Results: Four hundred twenty-nine respondents were included in the analysis. Forty-eight percent of parents reported not being offered treatment options and 23% screened positive for decisional conflict. Parents who reported being offered options experienced less decisional conflict than parents who reported not being offered options (5% vs. 42%, p < 0.001). Further, parents with options were more likely to: feel sure about the decision (RR 1.08, 95% CI 1.02–1.15); understand the information (RR 1.92, 95% CI 1.63–2.28); be clear about the risks and benefits (RR 1.12, 95% CI 1.05–1.20); and, have sufficient support and advice to make a choice (RR 1.07, 95% CI 1.03–1.11). Conclusion: Many parents in our sample experienced decisional conflict after their clinical consultation. Involving parents in the decision making process might reduce their risk of decisional conflict. Evidence based interventions that support parent decision making involvement, such as shared decision making, should be evaluated and implemented in pediatrics as a strategy to reduce parents’ decisional conflict.Applied Science, Faculty ofNon UBCNursing, School ofReviewedFacult

Canadian hospital nurses’ roles in communication and decision-making about goals of care: An interpretive description of critical incidents

© 2017 Elsevier Inc. Background Nurses in acute medical units are uniquely positioned to support goals of care communication. Further understanding of nurse and physician perceptions about hospital nurses’ actual and possible roles was required to improve goals of care communication. Objective To critically examine nurse and physician perceptions of the nurse\u27s role in communication with seriously ill patients and their families. Design We focus on the qualitative component of a mixed method study. We employed an interpretive descriptive approach informed by Flanagan\u27s critical incident technique. Settings Participants were recruited from the acute medical units at three tertiary care hospitals in three Canadian provinces. Participants Thirty participants provided interviews (10 from each site): 12 nurses, 9 staff physicians and 9 medical resident physicians. Methods Participants’ described “critical incidents” they considered as “excellent” or “poor” or “usual” practice. Interviews, were audiotaped and transcribed. Team-based analysis used constant comparison and triangulation to identify healthcare team members’ roles in goals of care communication. Results We identified two major themes from 120 critical incidents: 1) the ambiguous nature of the nurse\u27s role in formal, physician-led, decision-making communication, and 2) embedded in care serious illness communication. Physicians understood nurses’ supportive role in relation to their own communication practices that culminated in decisions about care; nurses’ reported their roles were determined by unit routines, physician practices and preferences, and their self-confidence in supporting decision-making. Nurses described their unique role in facilitating informal and spontaneous communication with patients and families that was critical background work to physician-led goals of care communication. Conclusions Nurses and physicians had different understandings, practices and beliefs about goals of care communication The value of nurses embedded in care work is key to supporting the interprofessional team\u27s work during formal goals of care communication

Waiting for the body to fail: limits to end-of-life communication in Canadian hospitals

© 2016 Informa UK Limited, trading as Taylor & Francis Group. High-quality patient-centred care for hospitalised patients at the end of life requires health care teams to engage patients and families in communication and decision-making about goals of care. In the absence of such engagement, patient preferences may not be reflected in their care, and patients may be subjected to unwanted life-sustaining technologies such as mechanical ventilation and cardiopulmonary resuscitation. The DECIDE (DECIsion-making about goals of care for seriously ill, hospitalised medical patients) study was conducted with the aims of identifying barriers and ideas for improving end-of-life communication and decision-making with seriously ill patients in Canadian hospitals. Its qualitative component involved interviews with 30 physicians and nurses asking them to recall and describe hospital-based goals of care communication and decision-making incidents that had gone ‘well’ or ‘unwell’. This article explores a dominant pattern in participants’ accounts, which is a norm of waiting to initiate end-of-life discussions until seriously ill patients are within days or even hours of death. Attending to clinicians’ explanations of when and why goals of care discussions are routinely delayed provides opportunity to clarify and critically consider important and normally unarticulated rationales underlying end-of-life discussion practices between health care teams and patients/families in Canadian hospitals

A systematic review of the main mechanisms of heart failure disease management interventions

Objective: To identify the main mechanisms of heart failure ( HF ) disease management programmes based in hospitals, homes or the community. Methods: Systematic review of qualitative and quantitative studies using realist synthesis. The search strategy incorporated general and specific terms relevant to the research question: HF, self-care and programmes/interventions for HF patients. To be included, papers had to be published in English after 1995 ( due to changes in HF care over recent years ) to May 2014 and contain specific data related to mechanisms of effect of HF programmes. 10 databases were searched; grey literature was located via Proquest Dissertations and Theses, Google and publications from organisations focused on HF or self-care. Results: 33 studies ( n=3355 participants, mean age: 65 years, 35% women ) were identified ( 18 randomised controlled trials, three mixed methods studies, six pre-test post-test studies and six qualitative studies ). The main mechanisms identified in the studies were associated with increased patient understanding of HF and its links to self-care, greater involvement of other people in this self-care, increased psychosocial well-being and support from health professionals to use technology. Conclusion: Future HF disease management programmes should seek to harness the main mechanisms through which programmes actually work to improve HF self-care and outcomes, rather than simply replicating components from other programmes. The most promising mechanisms to harness are associated with increased patient understanding and self-efficacy, involvement of other caregivers and health professionals and improving psychosocial well-being and technology use