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.

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.

Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study.

BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of importance and satisfaction with elements of EOL care, informational needs, decision-making preferences, obstacles to a preferred location of death, clinical outcomes, and health care use before and during an index hospital admission for patients who have advanced chronic obstructive pulmonary disease (COPD). METHODS: A questionnaire with regard to quality EOL care was administered to patients older than 55 years of age who had advanced medical disease in five Canadian teaching hospitals. RESULTS: For 118 hospitalized patients who had advanced COPD, the following items were rated as extremely important for EOL care: not being kept alive on life support when there is little hope for meaningful recovery (54.9% of respondents), symptom relief (46.6%), provision of care and health services after discharge (40.0%), trust and confidence in physicians (39.7%), and not being a burden on caregivers (39.6%). Compared with patients who had metastatic cancer, patients with COPD had lower (P<0.05) satisfaction with care, interest in information about prognosis, cardiopulmonary resuscitation or mechanical ventilation, and referral rates to palliative care, whereas use of acute care services was higher (P<0.05) for patients who had advanced COPD. CONCLUSION: Canadian patients who have advanced COPD identify several priorities for improving care. Avoidance of prolonged or unwanted life support requires more effective communication, decision making and goal setting. Patients also deserve better symptom control and postdischarge strategies to minimize perceived burdens on caregivers, emergency room visits and hospital admissions.

Advanced chronic obstructive pulmonary disease: impact on informal caregivers.

Patients with advanced COPD experience significant functional decline and often incapacitating dyspnea towards the terminal stages. Their families may also experience a parallel decline in psychological and physical functioning, and informal caregivers are often the "invisible victims" of this progressive and incurable disease. As we move toward new and more comprehensive models of care for patients, these models should embrace the needs of those who witness and suffer from the relentless struggle of patients to cope with worsening dyspnea, and the broad range of associated fears and anxieties that are so prevalent in the advanced stages of COPD.

Advanced chronic obstructive pulmonary disease: innovative approaches to palliation.

By the year 2020, chronic obstructive pulmonary disease (COPD) will be the third leading cause of death globally. While there have been consistent calls for increased palliative care involvement in the care of patients with advanced COPD, these calls should be based on empirical evidence that such an approach improves the symptom burden and poor quality of life associated with advanced COPD. Rather than reviewing the traditional treatments of airflow obstruction and palliative measures familiar to the palliative care community, we will focus on some novel approaches to the management of patients with advanced COPD from the perspective of clinicians involved in end of life care provision and research. By combining the clinical and research skills of pulmonologists and palliative medicine specialists we can advance the care of patients with this progressive and incurable disease.

Spreading improvements for advanced COPD care through a Canadian Collaborative.

BACKGROUND: A year-long pan-Canadian quality improvement collaborative (QIC) led by the Canadian Foundation for Healthcare Improvement (CFHI) supported the spread of the successful Halifax, Nova Scotia-based INSPIRED COPD Outreach Program™ to 19 teams in the 10 Canadian provinces. We describe QIC results, addressing two main questions: 1) Can the results of the Nova Scotia INSPIRED model be replicated elsewhere in Canada? 2) How did the teams implement and evaluate their versions of the INSPIRED program? METHODS: Collaborative faculty selected measures that were evidence-based, relatively simple to collect, and relevant to local context. Chosen process and outcome measures are related to four quality domains: 1) patient- and family-centeredness, 2) coordination, 3) efficiency, and 4) appropriateness. Evaluation of a complex intervention followed a mixed-methods approach. RESULTS: Most participants were nurse managers and/or COPD educators. Only 8% were physicians. Fifteen teams incorporated all core INSPIRED interventions. All teams carried out evaluation. Thirteen teams actively involved patients and families in customized, direct care planning, eg, asking them to complete evaluative surveys and/or conducting interviews. Patients consistently reported greater self-confidence in symptom management, a return to daily activities, and improvements to quality of life. Twelve teams collected data on care transitions using the validated three-item Care Transitions Measure (CTM-3). Twelve teams used the Lung Information Needs Questionnaire (LINQ). Admissions, emergency room visits, and patient-related costs fell substantially for two teams described in detail (combined enrollment 208 patients). Most teams reported gaining deeper knowledge around complexities of COPD care, optimizing patient care through action plans, self-management support, psychosocial support, advance care planning, and coordinating community partnerships. CONCLUSION: Quality-of-care gains are achievable in the short term among different teams across diverse geographical and social contexts. A well-designed, adequately funded public-private partnership can deliver widespread beneficial outcomes for the health care system and for those living with advanced COPD.

Canadian nurses' and respiratory therapists' perspectives on withdrawal of life support in the intensive care unit.

PURPOSE: To describe perspectives of nurses (RNs) and respiratory therapists (RTs) related to end-of-life care for critically ill patients. METHODS: For patients who had life support withdrawn in 4 Canadian university-affiliated ICUs, RNs and RTs reported their comfort level with decision making and process for 14 aspects of end-of-life care. RESULTS: Ninety-eight patients had life support withdrawn. Responses were received from 96 (98.0%) bedside RNs and 73 (74.5%) RTs. Most RNs (85/94, 90.4%) and RTs (50/73, 68.5%) were very comfortable with decisions to withhold cardiopulmonary resuscitation or to withdraw life support (83/94, 88.3% of RNs and 56/73, 76.7% of RTs). Most RNs (range 71.3%-80.65%) and RTs (60.0%-70.8%) were very comfortable with ventilation/oxygen withdrawal and sedation. Among paired responses for 72 (73.5%) of 98 patients, RTs rated less favorably than RNs ( P < .05): the quality of the physician explanation of the life support withdrawal process, the availability of the physician, the peacefulness of the dying process, and the amount of privacy for families. Suggested improvements included earlier and more inclusive discussions, clearer plans, and better preparation of families and the ICU team for patients' deaths. CONCLUSIONS: Most RNs and RTs were comfortable with decision making and the process of life support withdrawal, but they suggested several ways to improve end-of-life care.

Burden of illness in venous thromboembolism in critical care: a multicenter observational study.

PURPOSE: The frequency of clinically diagnosed venous thromboembolism (VTE) including deep venous thrombosis (DVT) and pulmonary embolism (PE) in medical-surgical critically ill patients is unclear. The objectives of this study were to estimate the prevalence and incidence of radiologically confirmed DVT and PE in medical-surgical intensive care unit (ICU) patients and to determine the impact of prophylaxis on the frequency of these events. MATERIALS AND METHODS: In a retrospective observational cohort study in 12 adult ICUs, we identified prevalent cases (diagnosed in the 24 hours preceding ICU admission up to 48 hours post-ICU admission) and incident cases (diagnosed 48 hours or more after ICU admission and up to 8 weeks after ICU discharge) of upper or lower limb DVT or PE. Deep venous thrombosis was diagnosed by compression ultrasound or venogram. Each DVT was classified as clinically suspected or not clinically suspected in that the latter was diagnosed by scheduled screening ultrasonography. Pulmonary embolism was diagnosed by ventilation-perfusion lung scan, computed tomography pulmonary angiography, echocardiography, electrocardiography, or autopsy. RESULTS: Among 12,338 patients, 252 (2.0%) patients had radiologically confirmed DVT or PE and another 47 (0.4%) had possible DVT or PE. Prevalent DVTs were diagnosed in 0.4% (95% confidence interval [CI], 0.3%-0.5%) of patients and prevalent PEs were diagnosed in 0.4% (95% CI, 0.3%-0.6%). Incident DVTs were diagnosed in 1.0% (95% CI, 0.8%-1.2%) of patients, and incident PEs were diagnosed in 0.5% (95% CI, 0.4%-0.6%). Of patients with incident VTE, 65.8% of cases occurred despite receipt of thromboprophylaxis for at least 80% of their days in ICU. The median (interquartile range) ICU length of stay was similar for patients with DVT (7 [3-17]) and PE (5 [2-8]). For all patients with VTE, ICU mortality was 16.7% (95% CI, 12.0%-21.3%) and hospital mortality was 28.5% (95% CI, 22.8%-34.1%). CONCLUSIONS: Venous thromboembolism appears to be an apparently infrequent, but likely underdiagnosed problem, occurring among patients receiving prophylaxis. Findings suggest the need for increased suspicion among clinicians, renewed efforts at thromboprophylaxis, and evaluation of superior prevention strategies.

Palliative Care in Advanced Lung Disease: The Challenge of Integrating Palliation Into Everyday Care.

The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery.

Dying in the ICU: perspectives of family members.

OBJECTIVE: To describe the perspectives of family members to the care provided to critically ill patients who died in the ICU. DESIGN: Multicenter, prospective, observational study. SETTING: Six university-affiliated ICUs across Canada. METHODS: Patients who received mechanical ventilation for > 48 h and who died in the ICU were eligible for this study. Three to four weeks after the patient's death, we mailed a validated questionnaire to one selected family member who made at least one visit to the patient in the ICU. We obtained self-rated levels of satisfaction with key aspects of end-of-life care, communication, and decision making, and the overall ICU experience. MAIN RESULTS: Questionnaires were mailed to 413 family members; 256 completed surveys were returned (response rate, 62.0%). In the final hours before the death of the patient, family members reported that patients were "totally comfortable" (34.8%), "very comfortable" (23.8%), or "mostly comfortable" (32.0%). Family members felt "very supported" (57.0%) and "supported" (30.7%) by the health-care team. Most (82.0%) believed that the patient's life was neither prolonged nor shortened unnecessarily. Most family members (90.4%) preferred some form of shared decision making. Overall, 52% of families rated their satisfaction with care as "excellent," 31% rated care as "very good," 10% as "good," 4% as "fair," and 2% as "poor." Overall satisfaction with end-of-life care was significantly associated with completeness of information received by the family member, respect and compassion shown to patient and family member, and satisfaction with amount or level of health care received. CONCLUSIONS: The majority of families of patients who died in participating ICUs were satisfied with the end-of-life care provided. Adequate communication, good decision making, and respect and compassion shown to both the dying patient and their family are key determinants to family satisfaction.