The Impact of Integrated Palliative Care on Survival in Idiopathic Pulmonary Fibrosis: A Retrospective Multicenter Comparison.

Background: Early and integrated palliative care is recommended for patients with idiopathic pulmonary fibrosis. Unfortunately, palliative care delivery remains poor due to various barriers in practice. This study describes various palliative care delivery models in a real-world cohort of patients with idiopathic pulmonary fibrosis, examines the predictors of survival in this cohort of patients, and explores the impact of palliative care on survival. Design: Charts were reviewed retrospectively and analyzed. The primary outcome was survival during a 4-year follow-up period. Two multivariable models were created to examine the impact of therapeutic strategies including palliative intervention on survival. Results: 298 patients with idiopathic pulmonary fibrosis were enrolled from 3 interstitial lung disease clinics with different palliative care models in Edmonton, Canada; Bristol, UK; and Kingston, Canada. 200 (67%) patients received palliative care and 119 (40%) died during follow up. Primary palliative care models (Edmonton and Bristol) delivered palliative care to 96% and 100% respectively compared 21% in the referral model (Queens). Palliative care [adjusted hazard ratio (aHR) .28 (.12-.65)] along with the use of antifibrotics [aHR .56 (.37-.84)], and body mass index >30 [aHR .47 (.37-.85)] reduced the risk of death in our idiopathic pulmonary fibrosis cohort. Opioid use was associated with worse survival [aHR 2.11 (1.30-23.43)]. Conclusions: Both palliative care and antifibrotic use were associated with survival benefit in this cohort of patients with idiopathic pulmonary fibrosis after adjusting for covariates. The benefit was seen despite differences in disease severity and different palliative care delivery models.

Navigating Design Options for Large-Scale Interprofessional Continuing Palliative Care Education: Pallium Canada's Experience.

To be effective, palliative care education interventions need to be informed, among others, by evidence and best practices related to curriculum development and design. Designing palliative care continuing professional development (CPD) courses for large-scale, national deployment requires decisions about various design elements, including competencies and learning objectives to be addressed, overall learning approaches, content, and courseware material. Designing for interprofessional education (IPE) adds additional design complexity. Several design elements present themselves in the form of polarities, resulting in educators having to make choices or compromises between the various options. This article describes the learning design decisions that underpin Pallium Canada's interprofessional Learning Essential Approaches to Palliative Care (LEAP) courses. Social constructivism provides a foundational starting point for LEAP course design, as it lends itself well to both CPD and IPE. We then explore design polarities that apply to the LEAP courseware development. These include, among others, which professions to target and how to best support interprofessional learning, class sizes, course length and content volume, courseware flexibility, regional adaptations, facilitator criteria, and learning methods. In some cases, compromises have had to be made between optimal perfect design and pragmatism.

Code Status Documentation Availability and Accuracy Among Emergency Patients with End-stage Disease.

INTRODUCTION: Some patients with end-stage disease who may neither want nor benefit from aggressive resuscitation receive such treatment if they cannot communicate in an emergency. Timely access to patients' current resuscitation wishes, or "code status," should be a key metric of electronic health records (EHR). We sought to determine what percentage of a cohort of patients with end-stage disease who present to the emergency department (ED) have accessible, code status documents, and for those who do, how quickly can this documentation be retrieved. METHODS: In this cross-sectional study of ED patients with end-stage disease (eg, palliative care, metastatic malignancy, home oxygen, dialysis) conducted during purposefully sampled random accrual times we performed a standardized, timed review of available health records, including accompanying transfer documents. We also interviewed consenting patients and substitute decision makers to compare available code status documents to their current wishes. RESULTS: Code status documentation was unavailable within 15 minutes of ED arrival in most cases (54/85, or 63%). Retrieval time was under five minutes in the rest, especially when "one click deep" in the EHR. When interviewed, 20/32 (63%) expressed "do not resuscitate" wishes, 10 of whom had no supporting documentation. Patients from assisted-living (odds ratio [OR] 6.7; 95% confidence interval [CI], 1.7-26) and long-term care facilities (OR 13; 95% CI, 2.5-65) were more likely to have a documented code status available compared to those living in the community. CONCLUSION: The majority of patients with end-stage disease, including half of those who would not wish resuscitation from cardiorespiratory arrest, did not have code status documents readily available upon arrival to our tertiary care ED. Patients living in the community with advanced disease may be at higher risk for unwanted resuscitative efforts should they present to hospital in extremis. While easily retrievable code status documentation within the EHR shows promise, its accuracy and validity remain important considerations.

Acceptability and Feasibility of Early Palliative Care Among Women with Advanced Epithelial Ovarian Cancer: A Randomized Controlled Pilot Study.

OBJECTIVE: To evaluate the acceptability of early palliative care (EPC) among patients with advanced ovarian cancer and to determine the feasibility of larger-scale phase III trials. METHODS: We performed a randomized controlled pilot study of adult women (>18 years) with pathologically confirmed epithelial ovarian cancer that had recurred or progressed on first-line therapy and had no immediate need for palliative care. We randomly assigned patients to either EPC or standard oncologic care (SOC), and collected patient-reported outcomes (PRO) at baseline, 3 months, and 6 months; end-of-life care quality indicators were collected at study completion. Study endpoints were rates of enrollment, EPC adherence, and PRO completion. RESULTS: Of 32 eligible patients approached, 23 enrolled (72%; 95% CI 53-86) and were randomly assigned to either EPC (n = 12) or SOC (n = 11). At baseline, participants had poor physical and emotional wellbeing, high rates of depression (65%), and understood that their disease was not curable (87%). Eleven patients (92%; 95% CI 62-100) attended their EPC consultation, and all visits took place within 4 weeks of enrollment. However, PRO completion was low due to deaths by 3 (5/23) and 6 months (9/23). CONCLUSION: Patients had accurate perceptions of their disease status, were willing to be randomly assigned to EPC, and attended scheduled appointments. However, a definitive trial in this group is not feasible without major adjustments to eligibility criteria and a multicentre, international effort. We propose that EPC be considered routinely at progression or recurrence given patients' symptom burden and clear acceptance of the intervention, as well as evidence of benefit from adequately powered trials in other malignancies.

Impact of a Specialized Ambulatory Clinic on Refractory Breathlessness in Subjects With Advanced COPD.

BACKGROUND: Severe exertional dyspnea is a commonly reported symptom in patients with COPD, especially in the advanced stages. Our objective was to assess the preliminary impact of comprehensive, individualized management provided by a specialized tertiary center clinic on exertional dyspnea and patient-centered outcomes in patients with advanced COPD. METHODS: This retrospective analysis included 45 subjects with COPD who were evaluated in a newly established dyspnea clinic over 3 years. Those with severe exertional dyspnea (Medical Research Council dyspnea score of ≥4/5), despite optimal disease-targeted therapy were eligible for referral. We used the revised Edmonton Symptom Assessment System (ESAS-r) to assess symptoms. Responders were defined as those whose change from baseline to 2-months met the minimum clinically important difference of ≤-1 in ESAS-r score for shortness of breath. RESULTS: Subjects (mean ± SD age 70 ± 7 years) had an average FEV1 of 36 ± 18% predicted and a Medical Research Council dyspnea score of 4.7 ± 0.4. Responses to the intervention were variable and mean change in the ESAS-r score for shortness of breath in the total group was -0.32 ± 3.39, P = .53. Forty-seven percent of the subjects were identified as responders, and 42, 40, 40, and 33% met the minimum clinically important difference for improvement in ESAS-r scores for tiredness, anxiety, well-being, and depression, respectively. Responders had fewer emergency department annual visits in the 2 years after their first clinic visit compared with nonresponders (mean ± SD, 1.38 ± 1.63 vs 4.45 ± 5.52, P = .034). CONCLUSIONS: Although the impact of our specialized advanced dyspnea clinic was variable, as evaluated by the ESAS-r, it provided measurable additional clinically important benefit to almost half of the subjects with advanced COPD and severe refractory dyspnea.

A comprehensive and practical approach to the management of idiopathic pulmonary fibrosis.

Introduction: Idiopathic pulmonary fibrosis (IPF) is a debilitating, progressive, and fatal fibrotic pulmonary disease with a prognosis comparable to that of lung cancer. IPF management is a complex process that involves pharmacological and nonpharmacological interventions, extensive patient education, and addressing patient needs that change through the course of the illness. Areas covered: This review summarizes the key aspects of a multifaceted, multidisciplinary, individualized approach to IPF care that incorporates available treatment options, strategies to improve compliance with antifibrotic therapies, pulmonary rehabilitation, and the integration of palliative care for symptom management. Aspects of care discussed include the use of antifibrotic therapy and nonpharmacological treatments, targeted education and psychosocial support, evaluation and management of comorbidities, and early integration of palliative care. Expert opinion: By incorporating this comprehensive approach to disease management, physicians can address most aspects of care for a patient with IPF to optimize survival and quality of life.

Documenting Goals of Care Among Patients With Advanced Cancer: Results of a Quality Improvement Initiative.

PURPOSE: Guidelines recommend that oncologists discuss goals of care (GOC) with patients who have advanced cancer and that these patients be referred for early palliative care (PC). An audit of practice between 2010 and 2015 at the Cancer Centre of Southeastern Ontario suggested that these rates were suboptimal. We sought to improve the rate of documentation of GOC and referral to PC through the implementation of a quality improvement (QI) initiative. METHODS: Patients receiving palliative systemic treatment of lung, pancreatic, colorectal, and breast cancer were identified via electronic pharmacy records and the electronic patient care system. Using the Define, Measure, Analyze, Improve, Control QI methodology, we drafted a guideline for GOC documentation and PC referral and designed a standardized documentation system. E-mail reminders were sent to physicians and a QI scorecard was displayed to document overall and individual physician rates of GOC documentation. Data were analyzed monthly and presented on statistical process control P charts. RESULTS: Between May 2016 and November 2017, a total of 303 unique patients were identified (52%, 21%, 17%, and 10% with lung, breast, colorectal, and pancreatic cancer, respectively). GOC documentation increased significantly over the study period (baseline, 0%; passive phase, 3%; active phase, 31%); this increase was likely because of our intervention. PC referral rates also increased over the study period (baseline, 36%; passive phase, 35%; active phase 48%). We did not identify any patient, physician, or disease factors that were associated with GOC discussion or referral to PC. CONCLUSION: Our QI initiative was successful in improving rates of GOC documentation in patients with advanced cancer.

Provider Tools for Advance Care Planning and Goals of Care Discussions: A Systematic Review.

BACKGROUND: Advance care planning and goals of care discussions involve the exploration of what is most important to a person, including their values and beliefs in preparation for health-care decision-making. Advance care planning conversations focus on planning for future health care, ensuring that an incapable person's wishes are known and can guide the person's substitute decision maker for future decision-making. Goals of care discussions focus on preparing for current decision-making by ensuring the person's goals guide this process. AIM: To provide evidence regarding tools and/or practices available for use by health-care providers to effectively facilitate advance care planning conversations and/or goals of care discussions. DATA SOURCES: A systematic review was conducted focusing on guidelines, randomized trials, comparative studies, and noncomparative studies. Databases searched included MEDLINE, EMBASE, and the proceedings of the International Advance Care Planning Conference and the American Society of Clinical Oncology Palliative Care Symposium. CONCLUSIONS: Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning or goals of care discussions. Effective advance care planning conversations at both the population and the individual level require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. There is a need for research focused on goals of care discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate goals of care from advance care planning.

Chronic breathlessness in patients with idiopathic pulmonary fibrosis: a major challenge for caregivers.

INTRODUCTION: Idiopathic pulmonary fibrosis (IPF) is one of the most common forms of interstitial lung disease, with a median survival time of two to five years. Most patients with IPF experience chronic breathlessness, which is closely linked to poor perceived quality of life and significant restriction of daily activities; therefore, effective management of this distressing symptom is a major goal of patient care. Areas covered: This report summarizes the physiology of IPF during rest and exercise, outlines current concepts of the mechanisms of breathlessness, and provides a physiological rationale for optimal management of individual patients. It also examines the evidence for efficacy of a number of therapeutic interventions currently at our disposal for the management of breathlessness in IPF, which aim to reduce respiratory neural drive, reduce worsening of mechanical load, and alter central perception. Expert commentary: The current evidence supporting general measures in relieving chronic breathlessness is weak; hence, more carefully designed prospective studies are required.

Pharmacological management of breathlessness in COPD: recent advances and hopes for the future.

INTRODUCTION: Activity-related breathlessness is often the dominant symptom in patients with chronic obstructive pulmonary disease (COPD) and usually persists despite optimal medical therapy. Currently, our inability to meaningfully alter the pathophysiology of the underlying disease means that we must focus our attention on relieving this distressing symptom so as to improve exercise tolerance and quality of life. AREAS COVERED: The current review examines the neurobiology of breathlessness and constructs a solid physiological rationale for amelioration of this distressing symptom. We will examine the efficacy of interventions which: 1) reduce the increased central drive to breathe (opioids); 2) improve the respiratory system's ability to appropriately respond to this increased demand (bronchodilators); and 3) address the important affective dimension of breathlessness (anxiolytics). Expert commentary: Advances in our understanding of the mechanisms of activity-related breathlessness in COPD, and its measurement in the clinical domain, now set the stage for the development of effective management strategies on an individual patient basis.

Relationship between pain and post-traumatic stress symptoms in palliative care.

CONTEXT: Previous research suggests that patients receiving palliative care may simultaneously experience poorly managed pain and post-traumatic stress disorder (PTSD)-related symptoms as a result of their deteriorating health. OBJECTIVES: To: 1) examine predictors of PTSD-related symptoms in patients requiring palliative care; 2) assess whether anxiety, depression, pain catastrophizing, and pain anxiety mediate the relationship between pain interference and PTSD-related symptoms; and 3) evaluate the impact of these variables on pain interference and PTSD-related symptoms. METHODS: One hundred patients receiving palliative care at one of two palliative care sites in London, ON, Canada, completed the PTSD Checklist-Civilian version (PCL-C), the Hospital Anxiety and Depression Scale (HADS), the Pain Catastrophizing Scale (PCS), the Brief Pain Inventory-Short Form (BPI-SF), and the Pain Anxiety Symptoms Scale-20 (PASS-20). Hierarchical multiple regressions were used to examine HADS-Anxiety, HADS-Depression, PCS and PASS-20 scores as predictors of PCL-C scores; and mediation analyses were used to test the effect of HADS-Anxiety, HADS-Depression, PCS, and PASS-20 on the relationship between BPI-SF interference and PCL-C. Mediators that significantly affected this relationship in the individual mediator models were entered into a multiple mediator model. RESULTS: Only pain anxiety and pain catastrophizing emerged as significant mediators of the relationship between pain interference and PTSD-related symptoms. After being entered in a multiple mediator model, pain anxiety emerged as the strongest mediator. CONCLUSION: The findings of the present study reveal that pain and PTSD-related symptoms are important concerns in palliative care, and that pain must be addressed to best meet the needs of this population.

Cancer-related pain management: a report of evidence-based recommendations to guide practice.

OBJECTIVES: Cancer may be associated with many symptoms, but pain is the one most feared by patients. Pain is experienced by one-third of patients receiving treatment for cancer and about two-thirds of those with advanced cancers. To aid in providing quality care and pain relief for cancer patients, Cancer Care Ontario's Cancer-related Pain Management Guideline Panel conducted a systematic review of guidelines to provide evidence-based and consensus recommendations for the management of cancer-related pain to guide the practice of healthcare providers. METHODS: Published and unpublished cancer-related pain management guidelines were sought by conducting an Internet search, which included health organizations and the National Guidelines Clearinghouse, the Guideline International Network, and the McMillan Group. Also, MEDLINE searches were conducted for guidelines published between the years 2000 and May 2006. RESULTS: Twenty-five guidelines were found and the quality of each guideline was evaluated using the Appraisal of Guideline Research and Evaluation Instrument and the utility of the guideline for recommendations was assessed. Using these 2 criteria, 8 relevant and high-quality pain guidelines were identified. From these guidelines, the Panel articulated core principles of the management of cancer pain and selected or adapted specific recommendations through consensus to become a part of the cancer-related pain guide for practice. DISCUSSION: The domains on which recommendations were drafted include: assessment of pain; assessors of pain; time and frequency of assessment; components of pain assessment; assessment of pain in special populations; plan of care; pharmacologic intervention; nonpharmacologic intervention; documentation; education; and outcome measures of cancer-pain management.

Adjuvant carboplatin and paclitaxel chemotherapy interposed with involved field radiation for advanced endometrial cancer.

OBJECTIVE: To evaluate recurrence and survival associated with adjuvant carboplatin and paclitaxel chemotherapy interposed with involved field radiation for advanced endometrial cancer. METHOD: This is a prospective cohort study of women with Stage III and IV endometrial cancer treated at a single institution between April 2002 and July 2006. Adjuvant therapy consisted of 4 cycles of intravenous paclitaxel (175 mg/m(2)) and carboplatin (350 mg/m(2)) every 3 weeks, followed by external beam radiotherapy (RT) to the pelvis (45 Gy), then another 2 cycles of chemotherapy. Para-aortic RT and/or HDR vault brachytherapy were added at the discretion of the treating physician. Toxicity of this protocol was previously reported. Primary endpoints for this study were disease-free and overall survival rates. RESULTS: Forty-three patients with a median age of 64 years (46-83 years) were evaluated. The majority had Stage IIIC disease (63%), and the most common histology was serous carcinoma (49%). Six cycles of combination chemotherapy were completed in 81%, and all patients completed pelvic RT. Median follow-up was 30 months (9-71 months). Twenty-one patients (49%) recurred at a median of 17 months (7-62 months). There were only 3 local recurrences, including 2 in the pelvis and 1 in the vagina/vulva. Median disease-free survival (DFS) was 50 months and median overall survival (OS) has not been reached. Three year DFS and OS rates were 53% and 68%, respectively. CONCLUSION: Adjuvant carboplatin and paclitaxel chemotherapy interposed with involved field radiation is associated with a low rate of local recurrence and favorable survival for advanced endometrial cancer.