Exploring role clarity in interorganizational spread and scale-up initiatives: the 'INSPIRED' COPD collaborative.

BACKGROUND: Role clarification is consistently documented as a challenging process for inter professional healthcare teams, despite being a core tenet of interprofessional collaboration. This paper explores the role clarification process in two previously unexplored contexts: i) in the dissemination phase of a quality improvement (QI) program, and ii) as part of interorganizational partnerships for the care of chronic disease patients. METHODS: A secondary analysis using asynchronous purposive coding was conducted on an innovative pan-Canadian Chronic Obstructive Pulmonary Disease QI program. RESULTS: Our study reveals that the iterative structure of QI initiatives in the spread phase can offer numerous unique benefits to role clarification, with the potential challenge of time commitment. In addition, the role clarification process within interorganizational partnerships proved to be relatively well-structured, characterized by three phases: relationship conceptualization or early contact, familiarization, and finally, role division. Common strategies in the last stage included the establishment of working groups and new information-sharing networks. CONCLUSION: This article characterizes some ways in which providers and organizational partners negotiate their roles in a changing professional environment. As the movement towards integrated care continues, issues of role clarity are assuming increasing importance in healthcare contexts, and understanding role dynamics can provide valuable insight into the optimization of QI initiatives.

Improving care for advanced COPD through practice change: Experiences of participation in a Canadian spread collaborative.

Chronic obstructive pulmonary disease (COPD) is a leading cause of death, morbidity, and health-care spending. The Halifax, Nova Scotia-based INSPIRED COPD Outreach Program™ has proved highly beneficial for patients and the health-care system. With direct investment of <$1-million CAD, a pan-Canadian quality improvement collaborative (QIC) supported the spread of INSPIRED to 19 teams in the 10 Canadian provinces contingent upon participation in evaluation. The collaborative evaluation followed a mixed-methods summative approach relying on collated quantitative data, team documents, and surveys sent to core members of the 19 teams. Survey questions included a series of multiple-choice responses, Likert scale ratings, and open-ended questions. The qualitative evaluation entailed key informant interviews and focus groups undertaken between February and April 2016 post-collaborative. Teams reported that the year-long QIC helped bring focus to a needed, though often overlooked area of improvement, facilitating innovation spread. They report examples of new work practices as well as unanticipated cultural change (given the short QIC time frame). Most teams gained new skills in quality improvement (QI) and evidence-based medicine, showing progress in their ability to measure and implement COPD care improvements. Teams felt networking with other teams across the country toward a common solution as well as learning from a team of clinical innovators and evidence-based innovation were critical to their success. Factors affecting sustainability included local leadership support, involvement of frontline clinicians, and sharing milestones to motivate continued QI. The INSPIRED QIC enabled teams across Canada to adapt and implement a new COPD care model for high users of health-care with rapid improvements to work practices, cultural change, and skill sets, and at relatively low cost.

Number Needed To $ave?

The 'Number Needed to Treat' (NNT) is a useful measure for estimating the number of patients that would need to receive a therapeutic intervention to avoid one of the adverse events that the treatment is designed to prevent. We explored the possibility of an adaption of NNT to estimate the 'Number Needed to $ave' (NN$) as a new, conceptual systems metric to estimate potential cost-savings to the health system from implementation of a treatment, or in this case, a program. We used the outcomes of the INSPIRED COPD Outreach ProgramTM to calculate that 26 patients would need to complete the program to avoid healthcare expenditures of $100,000, based on hospital bed days avoided. The NN$ does not translate into 'cost savings' per se, but redirection of resource expenditures for other purposes. We propose that the NN$ metric, if further developed, could help to inform system-level resource allocation decisions in a manner similar to the way that the NNT metric helps to inform individual-level treatment decisions.

'INSPIRED' COPD Outreach Program™: doing the right things right.

The well-documented gaps between needed and provided care for patients and families living with chronic obstructive pulmonary disease (COPD) mandate changes to clinical practice. The multifaceted evidence-based INSPIRED COPD Outreach Program™ was first implemented in Halifax, Nova Scotia, Canada in 2010 (INSPIRED = Implementing a Novel and Supportive Program of Individualized care for patients and families living with REspiratory Disease) and undergoes ongoing evaluation. By enhancing patient confidence to manage their illness more effectively in their homes and communities, there has been a sustained and substantial reduction in facility-based care in comparison with patient care experience pre-INSPIRED. Sustaining and spreading a program recently designated a leading practice by Accreditation Canada, and especially modifying the program as new evidence emerges, requires integrating and modeling at the 'bedside' both evidence-based medicine ('doing the right things') and quality improvement ('doing them right'). In Canada, where COPD care gaps are common, a new pan-Canadian INSPIRED-based quality improvement program is supporting multidisciplinary healthcare teams to bridge the chasm between evidence and practice by working together to 'do the right things right' in COPD care.

'INSPIRED' approaches to better care for patients with advanced COPD.

Chronic Obstructive Pulmonary Disease (COPD) is the most common cause of admission to acute care facilities in Canada. The burden of illness for patients, caregivers and the health care system is profound. Dyspnea in advanced COPD pervades all aspects of patients' lives. When increasing symptom burden limits patients to their homes, crucial primary care services become less accessible, and care of end-stage COPD becomes increasingly fragmented and reactive. Given the considerable physical and psychosocial consequences of advanced COPD, this phase can be devastating for patients and families. In this article we outline the need for clinical interventions and re-organized models of care designed for better continuity to achieve more favorable outcomes for these patients and their families. Outreach programs and use of personalized action plans that include advice on careful use of opioids can be remarkably effective. The move toward an integrated approach to COPD management with more effective advance care planning will help patients and their families make informed decisions throughout the illness trajectory. Intensive medical treatment focused on increasing survival can coexist with both holistic and palliative approaches to improve the quality of life of patients with severe end-stage COPD.

The relationship between organizational culture and family satisfaction in critical care.

OBJECTIVES: Family satisfaction with critical care is influenced by a variety of factors. We investigated the relationship between measures of organizational and safety culture, and family satisfaction in critical care. We further explored differences in this relationship depending on intensive care unit survival status and length of intensive care unit stay of the patient. DESIGN: Cross-sectional surveys. SETTING: Twenty-three tertiary and community intensive care units within three provinces in Canada. SUBJECTS: One thousand two-hundred eighty-five respondents from 2374 intensive care unit clinical staff, and 880 respondents from 1381 family members of intensive care unit patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Intensive care unit staff completed the Organization and Management of Intensive Care Units survey and the Hospital Survey on Patient Safety Culture. Family members completed the Family Satisfaction in the Intensive Care Unit 24, a validated survey of family satisfaction. A priori, we analyzed adjusted relationships between each domain score from the culture surveys and either satisfaction with care or satisfaction with decision-making for each of four subgroups of family members according to patient descriptors: intensive care unit survivors who had length of intensive care unit stay <14 days or >14 days, and intensive care unit nonsurvivors who had length of stay <14 days or ≥14 days. We found strong positive relationships between most domains of organizational and safety culture, and satisfaction with care or decision-making for family members of intensive care unit nonsurvivors who spent at least 14 days in the intensive care unit. For the other three groups, there were only a few weak relationships between domains of organizational and safety culture and family satisfaction. CONCLUSIONS: Our findings suggest that the effect of organizational culture on care delivery is most easily detectable by family members of the most seriously ill patients who interact frequently with intensive care unit staff, who are intensive care unit nonsurvivors, and who spend a longer time in the intensive care unit. Positive relationships between measures of organizational and safety culture and family satisfaction suggest that by improving organizational culture, we may also improve family satisfaction.

Perspectives of patients, family caregivers and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease.

BACKGROUND: A recent national practice guideline recommends the use of opioids for the treatment of refractory dyspnea in patients with advanced chronic obstructive pulmonary disease (COPD). We conducted two qualitative studies to explore the experiences of patients and family caregivers with opioids for refractory COPD-related dyspnea and the perspectives and attitudes of physicians toward opioids in this context. METHODS: Patients (n = 8; 5 men, 3 women), their caregivers (n = 12; 5 men, 7 women) and physicians (n = 28, 17 men, 11 women) in Nova Scotia participated in the studies. Semistructured interviews were recorded, transcribed verbatim, coded conceptually and analyzed for emergent themes using interpretive description methodology. RESULTS: Patients reported that opioids provided a sense of calm and relief from severe dyspnea. Family caregivers felt that opioids helped patients to breathe more "normally," observed improvements in patients' symptoms of anxiety and depression, and experienced reductions in their own stress. Patients reported substantial improvements in their quality of life. All patients and family caregivers wanted opioid therapy to continue. Most physicians were reluctant to prescribe opioids for refractory dyspnea, describing a lack of related knowledge and experience, and fears related to the potential adverse effects and legal censure. INTERPRETATION: Discrepancies between the positive experiences of patients and family caregivers with opioids and the reluctance of physicians to prescribe opioids for refractory dyspnea constitute an important gap in care. Bridging this gap will require initiatives to improve the uptake of practice guidelines and to increase confidence in prescribing opioids for dyspnea refractory to conventional treatment.

Using opioids to treat dyspnea in advanced COPD: attitudes and experiences of family physicians and respiratory therapists.

OBJECTIVE: To explore the experiences of family physicians and respiratory therapists in treating advanced chronic obstructive pulmonary disease (COPD) and their attitudes to the use of opioids for dyspnea in this context. DESIGN: Qualitative methodology using one-on-one semistructured interviews. SETTING: Southern New Brunswick (St Stephen to Sussex). PARTICIPANTS: Ten family physicians and 8 respiratory therapists who worked in primary care settings. METHODS: Participant interviews were audiorecorded, transcribed verbatim, coded conceptually, and thematically analyzed using interpretive description. MAIN FINDINGS: Participants reported that patients with advanced COPD often suffered from inadequate control of their dyspnea in advanced stages and that they saw the potential value of opioids in this context; however, family physicians described discomfort prescribing opioids. Barriers included insufficient knowledge, lack of education and guidelines, and fear of censure. Those with palliative care experience tended to be more comfortable with opioid prescribing. CONCLUSION: Findings suggest an important need to address barriers related to more effective treatment of refractory dyspnea in advanced COPD. Further, findings indicate these efforts should focus on effective palliation and innovative educational initiatives, as well as the development, promotion, and uptake of evidence-based practice guidelines related to prescribing opioids for these patients.

Qualitative analysis of an intensive care unit family satisfaction survey.

OBJECTIVES: To describe the qualitative findings from a family satisfaction survey to identify and describe the themes that characterize family members' intensive care unit experiences. DESIGN: As part of a larger mixed-methods study to determine the relationship between organizational culture and family satisfaction in critical care, family members of eligible patients in intensive care units completed a Family Satisfaction Survey (FS-ICU 24), which included three open-ended questions about strengths and weaknesses of the intensive care unit based on the family members' experiences and perspectives. Responses to these questions were coded and analyzed to identify key themes. SETTING: Surveys were administered in 23 intensive care units from across Canada. PARTICIPANTS: Surveys were completed by family members of patients who were in the intensive care unit for >48 hrs and who had been visited by the family member at least once during their intensive care unit stay. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 1381 surveys were distributed and 880 responses were received. Intensive care unit experiences were found to be variable within and among intensive care units. Six themes emerged as central to respondents' satisfaction: quality of staff, overall quality of medical care, compassion and respect shown to the patient and family, communication with doctors, waiting room, and patient room. Within three themes, positive comments were more common than negative comments: quality of the staff (66% vs. 23%), overall quality of medical care provided (33% vs. 2%), and compassion and respect shown to the patient and family (29% vs. 12%). Within the other three themes, positive comments were less common than negative comments: communication with doctors (18% vs. 20%), waiting room (1% vs. 8%), and patient rooms (0.4% vs. 5%). CONCLUSIONS: The study provided improved understanding of why family members are satisfied or dissatisfied with particular elements of the intensive care unit and this knowledge can be used to modify intensive care units to better meet the physical and emotional needs of the families of intensive care unit patients.

Defining priorities for improving end-of-life care in Canada.

BACKGROUND: High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families. METHODS: We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with a global rating question to measure satisfaction with end-of-life care. We derived the relative importance of individual questions on the CANHELP questionnaire from their association with a global rating of satisfaction, as determined using Pearson correlation coefficients. To determine high-priority issues, we identified questions that had scores indicating high importance and low satisfaction. RESULTS: We approached 471 patients and 255 family members, of whom 363 patients and 193 family members participated, with response rates of 77% for patients and 76% for families. From the perspective of patients, high-priority areas needing improvement were related to feelings of peace, to assessment and treatment of emotional problems, to physician availability and to satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened. From the perspective of family members, similar areas were identified as high in priority, along with the additional areas of timely information about the patient's condition and discussions with the doctor about final location of care and use of end-of-life technology. INTERPRETATION: End-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making.

The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire.

The purpose of this study was to further validate a novel instrument to measure satisfaction with end-of-life care, called the Canadian Health Care Evaluation Project (CANHELP) questionnaire. Data were collected by a cross-sectional survey of patients who had advanced, life-limiting illnesses and their family caregivers, and who completed CANHELP, a global rating of satisfaction, and a quality of life questionnaire. We conducted factor analysis, assessed internal consistency using Cronbach's alpha, and evaluated construct validity by describing the correlation amongst CANHELP, global rating of satisfaction and the quality of life questionnaire scores. There were 361 patient and 193 family questionnaires available for analysis. In the factor analysis, we identified six easily interpretable factors which explained 55.4% and 60.2% of the variance for the patient and caregiver questionnaire, respectively. For the patient version, the subscales derived from these factors were Relationship with Doctors, Illness Management, Communication, Decision-Making, Role of the Family, and Your Well-being. For the family questionnaire, the factors were Relationship with Doctors, Characteristics of Doctors and Nurses, Illness Management, Communication and Decision-Making, Your Involvement, and Your Well-being. Each subscale for each questionnaire had acceptable to excellent internal consistency (Cronbach's alpha ranged from 0.69-0.94). We observed good correlations between the CANHELP overall satisfaction score and global rating of satisfaction (correlation coefficient 0.49 and 0.63 for patient and family, respectively) which was greater than the correlations between CANHELP and the quality of life instruments. We conclude that the CANHELP Questionnaire is a valid and internally consistent instrument to measure satisfaction with end-of-life care.

Noninvasive ventilation for acute respiratory failure near the end of life.

RATIONALE: For patients with acute respiratory failure who have declined intubation and resuscitation or have chosen comfort measures only, noninvasive ventilation (NIV) may help them achieve important health or personal goals, or merely prolong the dying process. OBJECTIVE: To determine clinicians' attitudes to and stated use of NIV for these patients. METHODS: We developed an instrument to assess the attitudes of intensivists, pulmonologists, and respiratory therapists (RTs) toward the use of NIV for patients with acute respiratory failure near or at the end of life. After assessing its psychometric properties, we mailed the survey to these clinicians at 18 Canadian and two U.S. hospitals. We analyzed factors associated with stated use of NIV for do-not-resuscitate and comfort-measures-only patients. RESULTS: Overall, 104 of 183 (57%) physicians and 290 of 473 (61%) RTs participated. Two thirds of physicians include NIV during life support discussions with do-not-resuscitate patients at least sometimes, and 87% of RTs stated that NIV should be included in such discussions. For patients choosing comfort measures only, almost half of physicians reported including NIV as an option in their discussions at least sometimes, while fewer than half of RTs stated that these discussions should be conducted. Most (>80%) physicians use NIV and most (>80%) RTs are asked to initiate NIV for do-not-resuscitate patients with chronic obstructive pulmonary disease or cardiogenic pulmonary edema. Fewer clinicians report using NIV for do-not-resuscitate patients with underlying malignancy (59% of physicians, 69% of RTs) or for patients choosing comfort measures only (40% of physicians, 51% of RTs; p < .001). CONCLUSIONS: For patients with do-not-resuscitate orders, many physicians use NIV, and many RTs are asked to initiate NIV, most often to treat chronic obstructive pulmonary disease and cardiogenic pulmonary edema. Further study is needed on the goals of NIV near the end of life, whether these goals are understood by all stakeholders, and how well they are achieved in practice.