Community-led, peer-facilitated Advance Care Planning workshops prompt increased Advance Care Planning behaviors among public attendees.

Objective: Despite recognized benefits, engagement in Advance Care Planning (ACP) remains low. Research into peer-facilitated, group ACP interventions is limited. This study investigated the acceptability of community-led peer-facilitated ACP workshops for the public and whether these workshops are associated with increased knowledge, motivation and engagement in ACP behaviors. Methods: Peer-facilitators from 9 community organizations were recruited and trained to deliver free ACP workshops to members of the public with an emphasis on conversation. Using a cohort design, workshop acceptability and engagement in ACP behaviors was assessed by surveying public participants at the end of the workshop and 4-6 weeks later. Results: 217 participants returned post-workshop questionnaires, and 69 returned follow-up questionnaires. Over 90% of participants felt they gained knowledge across all 6 learning goals. Every ACP behavior saw a statistically significant increase in participant completion after 4-6 weeks. Almost all participants were glad they attended (94%) and would recommend the workshop to others (95%). Conclusion: This study revealed an association of peer-facilitated ACP workshops and completion of ACP behaviors in public participants. Innovation: This innovative approach supports investment in the spread of community-based, peer-facilitated ACP workshops for the public as important ACP promotion strategies.

"Now I get what's important" - Shifting philosophies of hospice society staff and trained volunteers involved in peer-facilitated Advance Care Planning workshops for the public.

OBJECTIVE: Community-led approaches can increase public engagement in Advance Care Planning (ACP). Better understanding of the experiences and perspectives of community staff and volunteers who host and facilitate community-led, peer-facilitated ACP workshops is valuable when considering the spread of these approaches. METHODS: Content analysis of qualitative data from community-based hospice societies delivering ACP workshops to the public in British Columbia: one-on-one interviews with 5 organizational representatives and focus groups with 13 peer facilitators. RESULTS: Three main categories emerged: 1) ACP is about 'Living well'; 2) Transitioning focus from legal forms to conversations; 3) Benefits to all involved. CONCLUSIONS: Community staff and volunteers acknowledge the role they could play in promoting ACP in their communities. They recognize the benefits to the facilitators and public participants from following a community-led approach that emphasizes the importance of ACP conversations over the completion of relevant legal forms. Additional potential benefits of this approach, as reported by the organizational representatives, are increased volunteer engagement, more community partnerships, and an enhanced organizational profile. PRACTICE IMPLICATIONS: This community-led model can be a meaningful and approachable way to engage the public in ACP. Hospice societies are well positioned in the community to incorporate ACP workshops into their programming.

Essential Elements to Implementing a Paramedic Palliative Model of Care: An Application of the Consolidated Framework for Implementation Research.

Background: Comfort care without transport to hospital was not traditionally a paramedic practice. The novel Paramedics Providing Palliative Care at Home Program includes a new clinical practice guideline, medications, a database to manage and share goals of care, and palliative care training. This study determined essential elements for implementation, scale, and spread of this Program. Methods: Deliberative dialogs, a qualitative method, were held with diverse stakeholders/experts in one province with the Program (Nova Scotia, March 2018) and one without (British Columbia, July 2018). The Consolidated Framework for Implementation Research (CFIR) informed the discussion guide and was used in a framework analysis. Four team members analyzed the data independently; themes were derived by consensus with the broader research team. Results: CFIR constructs framed several key elements. Inter-sectoral communication is critical but challenged by privacy concerns and the siloed structure of the health system. Locally adapted training is an essential characteristic of the intervention; cost is a factor. A shift in mindset away from traditional paramedic roles is required; this can be facilitated by paramedic champions and a positive implementation climate. Early engagement of diverse stakeholders and planning for sustainability is key. Conclusion: This framework analysis using CFIR constructs can guide successful scale and spread of the program. The constructs of Outer setting: Cosmopolitanism; Characteristics of the intervention: Adaptability; Inner Setting: Implementation climate; and Processes: Engagement, and Planning, emerged as essential.

The impact of a cardiopulmonary resuscitation video on reducing surrogates' anxiety: A pilot randomized controlled trial.

PURPOSE: To test the primary hypothesis that a CPR video will reduce ICU patients' surrogates' anxiety when deciding code status, as measured by the Hamilton Anxiety Rating (HAM-A) Scale, as compared to the no video group. MATERIALS AND METHODS: This is a prospective randomized control trial. Twenty-seven ICU patients' surrogates were enrolled in the study after receiving an ICU team-led code status discussion. After the enrollment, twelve surrogates were randomized to the video group and fifteen to the no video group. The primary outcome of anxiety was quantified using the HAM-A Scale. Demographic information, clinical data, and patients' provenance information (Home vs. Not Home) were collected. The patients' severity of illness was calculated using the Sequential Organ Failure Assessment (SOFA) Score. RESULTS: The HAM-A score in the video group was 5.65 points lower than in the no video group ([ß = -5.65, 95% CI -11.12 -0.18] P = 0.04). The statistically significant difference was maintained when adjusting for patients' SOFA Score and patients' provenance (P = 0.03). CONCLUSION: CPR video used to supplement ICU team-led code status discussions reduced surrogates' anxiety, as compared to no video. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03630965.

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.

Interventions for increasing the use of shared decision making by healthcare professionals.

BACKGROUND: Shared decision making (SDM) is a process by which a healthcare choice is made by the patient, significant others, or both with one or more healthcare professionals. However, it has not yet been widely adopted in practice. This is the second update of this Cochrane review. OBJECTIVES: To determine the effectiveness of interventions for increasing the use of SDM by healthcare professionals. We considered interventions targeting patients, interventions targeting healthcare professionals, and interventions targeting both. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase and five other databases on 15 June 2017. We also searched two clinical trials registries and proceedings of relevant conferences. We checked reference lists and contacted study authors to identify additional studies. SELECTION CRITERIA: Randomized and non-randomized trials, controlled before-after studies and interrupted time series studies evaluating interventions for increasing the use of SDM in which the primary outcomes were evaluated using observer-based or patient-reported measures. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane.We used GRADE to assess the certainty of the evidence. MAIN RESULTS: We included 87 studies (45,641 patients and 3113 healthcare professionals) conducted mainly in the USA, Germany, Canada and the Netherlands. Risk of bias was high or unclear for protection against contamination, low for differences in the baseline characteristics of patients, and unclear for other domains.Forty-four studies evaluated interventions targeting patients. They included decision aids, patient activation, question prompt lists and training for patients among others and were administered alone (single intervention) or in combination (multifaceted intervention). The certainty of the evidence was very low. It is uncertain if interventions targeting patients when compared with usual care increase SDM whether measured by observation (standardized mean difference (SMD) 0.54, 95% confidence interval (CI) -0.13 to 1.22; 4 studies; N = 424) or reported by patients (SMD 0.32, 95% CI 0.16 to 0.48; 9 studies; N = 1386; risk difference (RD) -0.09, 95% CI -0.19 to 0.01; 6 studies; N = 754), reduce decision regret (SMD -0.10, 95% CI -0.39 to 0.19; 1 study; N = 212), improve physical (SMD 0.00, 95% CI -0.36 to 0.36; 1 study; N = 116) or mental health-related quality of life (QOL) (SMD 0.10, 95% CI -0.26 to 0.46; 1 study; N = 116), affect consultation length (SMD 0.10, 95% CI -0.39 to 0.58; 2 studies; N = 224) or cost (SMD 0.82, 95% CI 0.42 to 1.22; 1 study; N = 105).It is uncertain if interventions targeting patients when compared with interventions of the same type increase SDM whether measured by observation (SMD 0.88, 95% CI 0.39 to 1.37; 3 studies; N = 271) or reported by patients (SMD 0.03, 95% CI -0.18 to 0.24; 11 studies; N = 1906); (RD 0.03, 95% CI -0.02 to 0.08; 10 studies; N = 2272); affect consultation length (SMD -0.65, 95% CI -1.29 to -0.00; 1 study; N = 39) or costs. No data were reported for decision regret, physical or mental health-related QOL.Fifteen studies evaluated interventions targeting healthcare professionals. They included educational meetings, educational material, educational outreach visits and reminders among others. The certainty of evidence is very low. It is uncertain if these interventions when compared with usual care increase SDM whether measured by observation (SMD 0.70, 95% CI 0.21 to 1.19; 6 studies; N = 479) or reported by patients (SMD 0.03, 95% CI -0.15 to 0.20; 5 studies; N = 5772); (RD 0.01, 95%C: -0.03 to 0.06; 2 studies; N = 6303); reduce decision regret (SMD 0.29, 95% CI 0.07 to 0.51; 1 study; N = 326), affect consultation length (SMD 0.51, 95% CI 0.21 to 0.81; 1 study, N = 175), cost (no data available) or physical health-related QOL (SMD 0.16, 95% CI -0.05 to 0.36; 1 study; N = 359). Mental health-related QOL may slightly improve (SMD 0.28, 95% CI 0.07 to 0.49; 1 study, N = 359; low-certainty evidence).It is uncertain if interventions targeting healthcare professionals compared to interventions of the same type increase SDM whether measured by observation (SMD -0.30, 95% CI -1.19 to 0.59; 1 study; N = 20) or reported by patients (SMD 0.24, 95% CI -0.10 to 0.58; 2 studies; N = 1459) as the certainty of the evidence is very low. There was insufficient information to determine the effect on decision regret, physical or mental health-related QOL, consultation length or costs.Twenty-eight studies targeted both patients and healthcare professionals. The interventions used a combination of patient-mediated and healthcare professional directed interventions. Based on low certainty evidence, it is uncertain whether these interventions, when compared with usual care, increase SDM whether measured by observation (SMD 1.10, 95% CI 0.42 to 1.79; 6 studies; N = 1270) or reported by patients (SMD 0.13, 95% CI -0.02 to 0.28; 7 studies; N = 1479); (RD -0.01, 95% CI -0.20 to 0.19; 2 studies; N = 266); improve physical (SMD 0.08, -0.37 to 0.54; 1 study; N = 75) or mental health-related QOL (SMD 0.01, -0.44 to 0.46; 1 study; N = 75), affect consultation length (SMD 3.72, 95% CI 3.44 to 4.01; 1 study; N = 36) or costs (no data available) and may make little or no difference to decision regret (SMD 0.13, 95% CI -0.08 to 0.33; 1 study; low-certainty evidence).It is uncertain whether interventions targeting both patients and healthcare professionals compared to interventions of the same type increase SDM whether measured by observation (SMD -0.29, 95% CI -1.17 to 0.60; 1 study; N = 20); (RD -0.04, 95% CI -0.13 to 0.04; 1 study; N = 134) or reported by patients (SMD 0.00, 95% CI -0.32 to 0.32; 1 study; N = 150 ) as the certainty of the evidence was very low. There was insuffient information to determine the effects on decision regret, physical or mental health-related quality of life, or consultation length or costs. AUTHORS' CONCLUSIONS: It is uncertain whether any interventions for increasing the use of SDM by healthcare professionals are effective because the certainty of the evidence is low or very low.

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

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's 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's 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's 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's work during formal goals of care communication.

Development of a decision aid for cardiopulmonary resuscitation and invasive mechanical ventilation in the intensive care unit employing user-centered design and a wiki platform for rapid prototyping.

BACKGROUND: Upon admission to an intensive care unit (ICU), all patients should discuss their goals of care and express their wishes concerning life-sustaining interventions (e.g., cardiopulmonary resuscitation (CPR)). Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients. OBJECTIVES: To adapt an existing decision aid about CPR to create a wiki-based decision aid individually adapted to each patient's risk factors; and to document the use of a wiki platform for this purpose. METHODS: We conducted three weeks of ethnographic observation in our ICU to observe intensivists and patients discussing goals of care and to identify their needs regarding decision making. We interviewed intensivists individually. Then we conducted three rounds of rapid prototyping involving 15 patients and 11 health professionals. We recorded and analyzed all discussions, interviews and comments, and collected sociodemographic data. Using a wiki, a website that allows multiple users to contribute or edit content, we adapted the decision aid accordingly and added the Good Outcome Following Attempted Resuscitation (GO-FAR) prediction rule calculator. RESULTS: We added discussion of invasive mechanical ventilation. The final decision aid comprises values clarification, risks and benefits of CPR and invasive mechanical ventilation, statistics about CPR, and a synthesis section. We added the GO-FAR prediction calculator as an online adjunct to the decision aid. Although three rounds of rapid prototyping simplified the information in the decision aid, 60% (n = 3/5) of the patients involved in the last cycle still did not understand its purpose. CONCLUSIONS: Wikis and user-centered design can be used to adapt decision aids to users' needs and local contexts. Our wiki platform allows other centers to adapt our tools, reducing duplication and accelerating scale-up. Physicians need training in shared decision making skills about goals of care and in using the decision aid. A video version of the decision aid could clarify its purpose.

Challenges in clarifying goals of care in patients with advanced heart failure.

PURPOSE OF REVIEW: Patients with advanced heart failure require communication about goals of care, yet many challenges exist, leaving it suboptimal. High mortality rates and advances in the use of life-sustaining technology further complicate communication and underscore the urgency to understand and address these challenges. This review highlights current research with a view to informing future research and practice to improve goals of care communication. RECENT FINDINGS: Clinicians view patient and family barriers as more impactful than clinician and system factors in impeding goals of care discussions. Knowledge gaps about life-sustaining technology challenge timely goals of care discussions. Complex, nurse-led interventions that activate patient, clinician and care systems and video-decision aids about life-sustaining technology may reduce barriers and facilitate goals of care communication. SUMMARY: Clinicians require relational skills in facilitating goals of care communication with diverse patients and families with heart failure knowledge gaps, who may be experiencing stress and discord. Future research should explore the dynamics of goals of care communication in real-time from patient, family and clinician perspectives, to inform development of upstream and complex interventions that optimize communication. Further testing of interventions is needed in and across community and hospital settings.

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.

The Caregiver Contribution to Heart Failure Self-Care (CACHS): Further Psychometric Testing of a Novel Instrument.

Caregivers (CGs) contribute important assistance with heart failure (HF) self-care, including daily maintenance, symptom monitoring, and management. Until CGs' contributions to self-care can be quantified, it is impossible to characterize it, account for its impact on patient outcomes, or perform meaningful cost analyses. The purpose of this study was to conduct psychometric testing and item reduction on the recently developed 34-item Caregiver Contribution to Heart Failure Self-care (CACHS) instrument using classical and item response theory methods. Fifty CGs (mean age 63 years ±12.84; 70% female) recruited from a HF clinic completed the CACHS in 2014 and results evaluated using classical test theory and item response theory. Items would be deleted for low (<.05) or high (>.95) endorsement, low (<.3) or high (>.7) corrected item-total correlations, significant pairwise correlation coefficients, floor or ceiling effects, relatively low latent trait and item information function levels (<1.5 and p > .5), and differential item functioning. After analysis, 14 items were excluded, resulting in a 20-item instrument (self-care maintenance eight items; monitoring seven items; and management five items). Most items demonstrated moderate to high discrimination (median 2.13, minimum .77, maximum 5.05), and appropriate item difficulty (-2.7 to 1.4). Internal consistency reliability was excellent (Cronbach α = .94, average inter-item correlation = .41) with no ceiling effects. The newly developed 20-item version of the CACHS is supported by rigorous instrument development and represents a novel instrument to measure CGs' contribution to HF self-care. © 2016 Wiley Periodicals, Inc.

Caregiver Contribution to Heart Failure Self-Care (CACHS).

AIM: While caregivers (CGs) make an important contribution to the self-care of heart failure (HF) patients, there are no reliable and valid tools for measuring such contributions. Current interventions that strive to optimize patient outcomes through self-care strategies neglect to account for CG contributions, a potential confounder on outcomes. The aim of the study was to develop an instrument that measures CG contributions to HF patients' self-care. DESIGN: The study design follows an established process for instrument development. METHODS: A systematic literature review and semi-structured interviews of CGs were conducted to identify measureable CG activities. Items were derived from thematic analysis of CG narratives. A content validity index was computed for each item (I-CVI). Items with an I-CVI of >0·70 were retained. Items with an I-CVI of 0·50-0·70 were revised for clarification and items with an I-CVI <0·5 were discarded, except in instances where fulsome theoretical or empirical evidence supported their retention. RESULTS: 14 CGs completed interviews and 10 CGs with 4 expert nurses completed I-CVI testing. Major interview themes included arranging appointments, medication adherence, monitoring, coordinating care, encouraging independence and taking action. A total of 36 items were constructed and underwent I-CVI testing. Following I-CVI testing, 27 items were retained, seven items were retained after revision based on CG feedback and two items were removed. This newly developed 34-item questionnaire represents current literature, CGs' experiences, excellent I-CVI scores and ready for further psychometric testing.

Shared Decision Making to Support the Provision of Palliative and End-of-Life Care in the Emergency Department: A Consensus Statement and Research Agenda.

BACKGROUND: Little is known about the optimal use of shared decision making (SDM) to guide palliative and end-of-life decisions in the emergency department (ED). OBJECTIVE: The objective was to convene a working group to develop a set of research questions that, when answered, will substantially advance the ability of clinicians to use SDM to guide palliative and end-of-life care decisions in the ED. METHODS: Participants were identified based on expertise in emergency, palliative, or geriatrics care; policy or patient-advocacy; and spanned physician, nursing, social work, legal, and patient perspectives. Input from the group was elicited using a time-staggered Delphi process including three teleconferences, an open platform for asynchronous input, and an in-person meeting to obtain a final round of input from all members and to identify and resolve or describe areas of disagreement. CONCLUSION: Key research questions identified by the group related to which ED patients are likely to benefit from palliative care (PC), what interventions can most effectively promote PC in the ED, what outcomes are most appropriate to assess the impact of these interventions, what is the potential for initiating advance care planning in the ED to help patients define long-term goals of care, and what policies influence palliative and end-of-life care decision making in the ED. Answers to these questions have the potential to substantially improve the quality of care for ED patients with advanced illness.

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

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's 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 'making sense of the situation', 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.

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.

Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians.

IMPORTANCE: Seriously ill hospitalized patients have identified communication and decision making about goals of care as high priorities for quality improvement in end-of-life care. Interventions to improve care are more likely to succeed if tailored to existing barriers. OBJECTIVE: To determine, from the perspective of hospital-based clinicians, (1) barriers impeding communication and decision making about goals of care with seriously ill hospitalized patients and their families and (2) their own willingness and the acceptability for other clinicians to engage in this process. DESIGN, SETTING, AND PARTICIPANTS: Multicenter survey of medical teaching units of nurses, internal medicine residents, and staff physicians from participating units at 13 university-based hospitals from 5 Canadian provinces. MAIN OUTCOMES AND MEASURES: Importance of 21 barriers to goals of care discussions rated on a 7-point scale (1 = extremely unimportant; 7 = extremely important). RESULTS: Between September 2012 and March 2013, questionnaires were returned by 1256 of 1617 eligible clinicians, for an overall response rate of 77.7% (512 of 646 nurses [79.3%], 484 of 634 residents [76.3%], 260 of 337 staff physicians [77.2%]). The following family member-related and patient-related factors were consistently identified by all 3 clinician groups as the most important barriers to goals of care discussions: family members' or patients' difficulty accepting a poor prognosis (mean [SD] score, 5.8 [1.2] and 5.6 [1.3], respectively), family members' or patients' difficulty understanding the limitations and complications of life-sustaining treatments (5.8 [1.2] for both groups), disagreement among family members about goals of care (5.8 [1.2]), and patients' incapacity to make goals of care decisions (5.6 [1.2]). Clinicians perceived their own skills and system factors as less important barriers. Participants viewed it as acceptable for all clinician groups to engage in goals of care discussions-including a role for advance practice nurses, nurses, and social workers to initiate goals of care discussions and be a decision coach. CONCLUSIONS AND RELEVANCE: Hospital-based clinicians perceive family member-related and patient-related factors as the most important barriers to goals of care discussions. All health care professionals were viewed as playing important roles in addressing goals of care. These findings can inform the design of future interventions to improve communication and decision making about goals of care.

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.

Caregivers' contributions to heart failure self-care: a systematic review.

AIMS: The purpose of this study was to conduct a systematic review answering the following questions: (a) what specific activities do caregivers (CGs) contribute to patients' self-care in heart failure (HF)?; and (b) how mature (or developed) is the science of the CG contribution to self-care? METHODS: MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Cochrane Library and ClinicalTrials.gov were searched using the terms heart failure and caregiv* as well as the keywords 'careers', 'family members' and 'lay persons' for studies published between 1948 and September 2012. Inclusion criteria for studies were: informal CGs of adult HF patients-either as dependent/independent variable in quantitative studies or participant in qualitative studies; English language. Exclusion criteria for studies were: formal CGs; pediatric, adult congenital, or devices or transplant CGs; mixed diagnosis; non-empiric reports or reports publishing duplicate results. Each study was abstracted and confirmed by two authors. After CG activities were identified and theoretically categorized, an analysis across studies was conducted. RESULTS: Forty papers were reviewed from a pool of 283 papers. CGs contribute substantively to HF patients' self-care characterized from concrete (weighing the patient) to interpersonal (providing understanding). Only two studies attempted to quantify the impact of CGs' activities on patients' self-care reporting a positive impact. Our analysis provides evidence for a rapidly developing science that is based largely on observational research. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: To our knowledge, this is the first systematic review to examine CGs' contributions in depth. Informal caregivers play a major role in HF self-care. Longitudinal research is needed to examine the impact of CGs' contributions on patient self-care outcomes.

Interventions for improving the adoption of shared decision making by healthcare professionals.

BACKGROUND: Shared decision making (SDM) can reduce overuse of options not associated with benefits for all and respects patient rights, but has not yet been widely adopted in practice. OBJECTIVES: To determine the effectiveness of interventions to improve healthcare professionals' adoption of SDM. SEARCH METHODS: For this update we searched for primary studies in The Cochrane Library, MEDLINE, EMBASE, CINAHL, the Cochrane Effective Practice and Organisation of Care (EPOC) Specialsied Register and PsycINFO for the period March 2009 to August 2012. We searched the Clinical Trials.gov registry and the proceedings of the International Shared Decision Making Conference. We scanned the bibliographies of relevant papers and studies. We contacted experts in the field to identify papers published after August 2012. SELECTION CRITERIA: Randomised and non-randomised controlled trials, controlled before-and-after studies and interrupted time series studies evaluating interventions to improve healthcare professionals' adoption of SDM where the primary outcomes were evaluated using observer-based outcome measures (OBOM) or patient-reported outcome measures (PROM). DATA COLLECTION AND ANALYSIS: The three overall categories of intervention were: interventions targeting patients, interventions targeting healthcare professionals, and interventions targeting both. Studies in each category were compared to studies in the same category, to studies in the other two categories, and to usual care, resulting in nine comparison groups. Statistical analysis considered categorical and continuous primary outcomes separately. We calculated the median of the standardized mean difference (SMD), or risk difference, and range of effect across studies and categories of intervention. We assessed risk of bias. MAIN RESULTS: Thirty-nine studies were included, 38 randomised and one non-randomised controlled trial. Categorical measures did not show any effect for any of the interventions. In OBOM studies, interventions targeting both patients and healthcare professionals had a positive effect compared to usual care (SMD of 2.83) and compared to interventions targeting patients alone (SMD of 1.42). Studies comparing interventions targeting patients with other interventions targeting patients had a positive effect, as did studies comparing interventions targeting healthcare professionals with usual care (SDM of 1.13 and 1.08 respectively). In PROM studies, only three comparisons showed any effect, patient compared to usual care (SMD of 0.21), patient compared to another patient (SDM of 0.29) and healthcare professional compared to another healthcare professional (SDM of 0.20). For all comparisons, interpretation of the results needs to consider the small number of studies, the heterogeneity, and some methodological issues. Overall quality of the evidence for the outcomes, assessed with the GRADE tool, ranged from low to very low. AUTHORS' CONCLUSIONS: It is uncertain whether interventions to improve adoption of SDM are effective given the low quality of the evidence. However, any intervention that actively targets patients, healthcare professionals, or both, is better than none. Also, interventions targeting patients and healthcare professionals together show more promise than those targeting only one or the other.

Missed opportunity? Caregiver participation in the clinical encounter. A videographic analysis.

OBJECTIVE: Although the assistance of caregivers is critical to patients undertaking self-care, little is known about their participation in visits and involvement in decision making. We sought to examine this caregiver participation in shared decision making through videographic analysis. METHODS: We identified video recordings from outpatient visits in which a healthcare professional, patient, and caregiver participated, drawn from five practice-based randomized trials testing the efficacy of decision aids vs. usual care. Two reviewers, working independently, coded videos to explore caregiver engagement in the clinical encounter, clinician facilitation of that engagement, and the influence of decision aids in the engagement process. RESULTS: In most of the 37 videos coded, caregivers' participation was self-triggered. We saw no impact of the use of decision aids on caregiver participation. Clinicians did not address the caregivers' preferred level of involvement in decision making in any of the video recorded encounters analyzed. CONCLUSION: In this analysis, most clinicians did not engage caregivers in outpatient visits for chronic care. While the use of decision aids improves communication between patient and clinician, they do not appear to affect caregiver involvement during consultations. PRACTICE IMPLICATIONS: Research on the comparative effectiveness of ways to engage caregivers to optimize patient-important outcomes, including enhancing the shared decision making process is necessary.