Patient-reported outcome measurement in palliative care: A hermeneutic narrative review.

OBJECTIVES: Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures. METHODS: A hermeneutic narrative review underpinned by a view of "knowing" as an ongoing social accomplishment and inspired by complexity theory. RESULTS: This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein. SIGNIFICANCE OF RESULTS: In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

Facilitators of palliative care quality improvement team cohesion: Lessons from a seven-site implementation project in India.

BACKGROUND: The Palliative Care: Promoting Access and Improvement of the Cancer Experience (PC-PAICE) initiative is a team-based, palliative care (PC) quality improvement (QI) project working to promote high-quality PC in India. As a PC QI initiative, PC-PAICE implementation relied upon building interdisciplinary teams, providing the ideal context for understanding facilitators of team cohesion that compelled clinical, organizational, and administrative team members to work together. There is an opportunity to leverage the intersection between QI implementation and organizational theory to inform and improve implementation science. PURPOSE: As a subaim of a larger implementation evaluation, we aimed to identify facilitators of team cohesion within QI implementation context. METHODOLOGY: A quota sampling approach captured the perspectives of 44 stakeholders across three strata (organizational leaders, clinical leaders, and clinical team members) from all seven sites through a semistructured interview guide informed by the Consolidated Framework for Implementation Research (CFIR). We used a combination of inductive and deductive approaches informed by organizational theory to identify facilitators. RESULT: We identified three facilitators of PC team cohesion: (a) balancing formalization and flexibility around team roles, (b) establishing widespread awareness of the QI project, and (c) prioritizing a nonhierarchical organizational culture. PRACTICE IMPLICATIONS: Leveraging CFIR to analyze PC-PAICE stakeholder interviews created a data set conducive to understanding complex multisite implementation. Layering role and team theory to our implementation analysis helped us identify facilitators of team cohesion across levels within the team (bounded team), beyond the team (teaming), and surrounding the team (culture). These insights demonstrate the value of team and role theories in implementation evaluation efforts.

Quality Improvement in Itself Changes Your Thinking: Lessons From Disseminating Quality Improvement Methods Through a Multisite International Collaborative Palliative Care Project in India.

PURPOSE: Seven major palliative care (PC) centers in India were mentored through the Palliative Care-Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) by US and Australian academic institutions to implement a quality improvement (QI) project to improve the accessibility and quality of PC at their respective centers. The objective was to evaluate the experiences of teams in implementing QI methods across diverse geographical settings in India. METHODS: A quota sampling approach was used to elicit perspectives of local stakeholders at each site. The Consolidated Framework for Implementation Research informed development of a semistructured interview guide. Analysis leveraged deductive and inductive approaches. RESULTS: We interviewed 44 participants (eight organizational leaders, 12 clinical leaders, and 24 team members) at seven sites and identified five themes. (1) Implementing QI methods enabled QI teams to think analytically to solve a complex problem and to identify resources. (2) Developing a problem statement by identifying specific gaps in patient care fostered team collaboration toward a common goal. (3) Making use of QI tools (eg, A3 process) systematically provided a new, straightforward QI toolkit and improved QI teams' conceptual understanding. (4) Enhancing stakeholder engagement allowed shared understanding of QI team members' roles and processes and shaped interventions tailored to the local context. (5) Designing less subjective processes for patient care such as assessment scales to identify patient's symptomatic needs positively changed work practices and culture. CONCLUSION: Engaging and empowering multiple stakeholders to use QI methods facilitated the expansion and improvement of PC and cancer services in India. PC-PAICE demonstrated an efficient, effective way to apply QI methods in an international context. The impact of PC-PAICE is being magnified by developing a cadre of Indian QI leaders.

Empowering families to take on a palliative caregiver role for patients with cancer in India: Persistent challenges and promising strategies.

BACKGROUND: The population of patients with cancer requiring palliative care (PC) is on the rise in India. Family caregivers will be essential members of the care team in the provision of PC. OBJECTIVE: We aimed to characterize provider perspectives of the challenges that Indian families face in taking on a palliative caregiving role. METHOD: Data for this analysis came from an evaluation of the PC-PAICE project, a series of quality improvement interventions for PC in India. We conducted 44 in-depth semi-structured interviews with organizational leaders and clinical team members at seven geographically and structurally diverse settings. Through thematic content analysis, themes relating to the caregivers' role were identified using a combination of deductive and inductive approaches. RESULT: Contextual challenges to taking up the PC caregiving role included family members' limited knowledge about PC and cancer, the necessity of training for caregiving responsibilities, and cultural preferences for pursuing curative treatments over palliative ones. Some logistical challenges include financial, time, and mental health limitations that family caregivers may encounter when navigating the expectations of taking on the caregiving role. Strategies to facilitate family buy-in for PC provision include adopting a family care model, connecting them to services provided by Non-Governmental Organizations, leveraging volunteers and social workers to foster PC awareness and training, and responding specifically to family's requests. CONCLUSION: Understanding and addressing the various challenges that families face in adopting the caregiver role are essential steps in the provision and expansion of PC in India. Locally initiated quality improvement projects can be a way to address these challenges based on the context.

Considerations for Fostering Palliative Care Awareness in Developing Contexts: Strategies From Locally Initiated Projects in India.

CONTEXT: Lack of palliative care (PC) awareness is a barrier to its utilization in developing contexts. OBJECTIVES: To identify and understand strategies that changed awareness of the concepts and value of palliative care in a multi-site quality improvement project in India. METHODS: The Palliative Care - Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) evaluation team conducted 44 semi-structured interviews with clinician and organization stakeholders at seven geographically dispersed sites. We used inductive and deductive approaches in this secondary analysis to identify emerging themes. RESULTS: We identified the following strategies to improve awareness of concepts and value of palliative care. Strategy 1: Educate medical trainees, staff, and the community about palliative care and its concepts. Sub-strategies: Participate in community events. Integrate PC concepts into early medical education. Standardize training for practitioners. Strategy 2: Design and disseminate India-specific research to reinforce awareness of the value of palliative care. Sub-strategies: Publish and use India-specific palliative care research. Strategy 3: Facilitate communication between providers and departments to improve awareness of palliative care services and its concepts. Sub-strategies: Create referral frameworks and network with providers referring to palliative care to change awareness of available services and palliative care concepts. CONCLUSION: To increase palliative care utilization, program development can include community and provider-focused efforts on awareness of the concepts and value of palliative care. These three strategies held salience across sites representing diverse Indian geographic and cultural settings; as such, they may be applicable to other contexts.

Effect of Cancer Pain Guideline Implementation on Pain Outcomes Among Adult Outpatients With Cancer-Related Pain: A Stepped Wedge Cluster Randomized Trial.

Importance: An evidence-practice gap exists for cancer pain management, and cancer pain remains prevalent and disabling. Objectives: To evaluate the capacity of 3 cancer pain guideline implementation strategies to improve pain-related outcomes for patients attending oncology and palliative care outpatient services. Design, Setting, and Participants: A pragmatic, stepped wedge, cluster-randomized, nonblinded, clinical trial was conducted between 2014 and 2019. The clusters were cancer centers in Australia providing oncology and palliative care outpatient clinics. Participants included a consecutive cohort of adult outpatients with advanced cancer and a worst pain severity score of 2 or more out of 10 on a numeric rating scale (NRS). Data were collected between August 2015 and May 2019. Data were analyzed July to October 2019 and reanalyzed November to December 2021. Interventions: Guideline implementation strategies at the cluster, health professional, and patient levels introduced with the support of a clinical champion. Main Outcomes and Measures: The primary measure of effect was the percentage of participants initially screened as having moderate to severe worst pain (NRS ≥ 5) who experienced a clinically important improvement of 30% or more 1 week later. Secondary outcomes included mean average pain, patient empowerment, fidelity to the intervention, and quality of life and were measured in all participants with a pain score of 2 or more 10 at weeks 1, 2, and 4. Results: Of 8099 patients screened at 6 clusters, 1564 were eligible, and 359 were recruited during the control phase (mean [SD] age, 64.2 [12.1] years; 196 men [55%]) and 329 during the intervention phase (mean [SD] age, 63.6 [12.7] years; 155 men [47%]), with no significant differences between phases on baseline measures. The mean (SD) baseline worst pain scores were 5.0 (2.6) and 4.9 (2.6) for control and intervention phases, respectively. The mean (SD) baseline average pain scores were 3.5 (2.1) for both groups. For the primary outcome, the proportions of participants with a 30% or greater reduction in a pain score of 5 or more of 10 at baseline were similar in the control and intervention phases (31 of 280 participants [11.9%] vs 30 of 264 participants [11.8%]; OR, 1.12; 95% CI, 0.79-1.60; P = .51). No significant differences were found in secondary outcomes between phases. Fidelity to the intervention was low. Conclusions and Relevance: A suite of implementation strategies was insufficient to improve pain-related outcomes for outpatients with cancer-related pain. Further evaluation is needed to determine the required clinical resources needed to enable wide-scale uptake of the fundamental elements of cancer pain care. Ongoing quality improvement activities should be supported to improve sustainability.

Situational analysis of the quality of palliative care services across India: a cross-sectional survey.

Objective: Palliative care services in India were established in the 1980s but there is no detailed up-to-date knowledge about the quality-of-service provision nationally. We aim to describe the current quality of palliative care provision in India, as measured against nationally adopted standards. Method: A digital survey adapted from the Indian Association of Palliative Care Standards Audit Tool was administered to 250 palliative care centres. Results: Two hundred and twenty-three (89%) palliative care centres participated - 26.4% were government-run, while the rest include non-governmental organisations, private hospitals, community-led initiatives and hospices. About 200 centres 'often' or 'always' fulfilled 16/21 desirable criteria; however, only 2/15 essential criteria were 'often' or 'always' fulfilled. Only 5.8% provide uninterrupted access to oral morphine. Significance of the results: Palliative care centres in India are falling short of meeting the essential quality standards, indicating the urgent need for new initiatives to drive national change.

"Do-not-resuscitate (DNR)" status determines mortality in patients with COVID-19.

We investigatd the influence of do-not-resuscitate (DNR) status on mortality of hospital inpatients who died of COVID-19. This is a retrospective, observational cohort study of all patients admitted to two New Jersey hospitals between March 15 and May 15, 2020, who had, or developed, COVID-19 (1270 patients). Of these, 640 patients died (570 [89.1%] with and 70 [10.9%] without a DNR order at the time of admission) and 630 survived (180 [28.6%] with and 450 [71.4%] without a DNR order when admitted). Among the 120 patients without COVID-19 who died during this interval, 110 (91.7%) had a DNR order when admitted. Deceased positive severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) patients were significantly more likely to have a DNR order on admission compared with recovered positive SARS-CoV-2 patients (P < 0.05), similar to those who tested negative for SARS-CoV-2. COVID-19 DNR patients had a higher mortality compared with COVID-19 non-DNR patients (log rank P < 0.001). DNR patients had a significantly increased hazard ratio of dying (HR 2.2 [1.5-3.2], P < 0.001) compared with non-DNR patients, a finding that remained significant in the multivariate model. The risk of death from COVID-19 was significantly influenced by the patients' DNR status.

Epilogue: Reflections from International Mentors of the Quality Improvement Training Programme in India.

The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017.

Palliative care and COVID-19 in the Australian context: a review of patients with COVID-19 referred to palliative care.

Objective Palliative care has played a key role in the response to the coronavirus disease 2019 (COVID-19) pandemic in Australia. This review of consecutive patients with COVID-19 referred to the palliative care consultancy service of a tertiary health service in Melbourne describes the palliative care experience with COVID-19 in Australia. Methods The experiences of 55 patients (median age 86 years; interquartile range (IQR) 81-90 years; 55% male; median Charlson comorbidity score 6 (IQR 5-8); 85% with Australia-modified Karnofsky Performance Status ≤50; 67% from residential aged care facilities) were reviewed to collect relevant data points. Results Most patients were referred for end-of-life care with symptoms including dyspnoea (80%) and agitation/delirium (60%). Continuous subcutaneous infusions were commenced in 71% of patients, with the most frequent medications being opioids and benzodiazepines in relatively small doses; 81% required ≤20 mg subcutaneous morphine equivalent and 64% required ≤10 mg subcutaneous midazolam over 24 h. Fifty patients (91%) died in hospital and the median time from palliative care referral to death was 3 days (IQR 1-5 days). Five patients were discharged back to residential aged care facilities. Overall, 80% of referrals were from the aged care team. Conclusion Our patients had similar demographics, symptoms, medication needs and outcomes to patients in similar settings overseas. We found the symptom management of patients with COVID-19 to be generally straightforward. However, the psychosocial needs of patients were predominant and contributed to complexity. This study highlights the need for well-integrated relationships between the palliative care consultancy service and the diverse range of key treating teams involved in the delivery of pandemic health care. What is known about the topic? Palliative care has played a key role in the response to the COVID-19 pandemic in Australia. There is limited research describing the Australian palliative care experience with the COVID-19 pandemic. What does this paper add? Patients with COVID-19 referred to a hospital-based palliative care consultancy service in Australia had similar demographic characteristics, symptoms, medication needs and outcomes to patients with COVID-19 referred to other palliative care services in the UK and the US. There were significant psychosocial issues affecting patients, families and staff in the context of the pandemic. What are the implications for practitioners? This study highlights the need for well-functioning working relationships between the palliative care consultancy service and other hospital teams that can be leveraged at a time of crisis, such as a pandemic, to provide optimal palliative care to patients.

Barriers and Facilitators of Using Quality Improvement To Foster Locally Initiated Innovation in Palliative Care Services in India.

BACKGROUND: Quality improvement (QI) methods represent a vehicle for fostering locally initiated innovation cycles. We partnered with palliative care services from seven diverse practice settings in India to foster locally initiated improvement projects. OBJECTIVE: To evaluate the implementation experiences of locally initiated palliative care improvement projects at seven diverse sites and understand the barriers and facilitators of using QI to improve palliative care in India. PARTICIPANTS: We use a quota sampling approach to capture the perspectives of 44 local stakeholders in each of the following three categories (organizational leaders, clinic leaders, and clinical team members) through a semi-structured interview guide informed by the consolidated framework for implementation research (CFIR). We use standard qualitative methods to identify facilitators and barriers to using QI methods in seven diverse palliative care contexts. RESULTS: Across all sites, respondents emphasized the following factors important in the success of quality improvement initiative: leveraging clinic level data, QI methods training, provider buy-in, engaged mentors, committed leadership, team support, interdepartmental coordination, collaborations with other providers, local champions, and having a structure for accountability. Barriers to using QI methods to improve palliative care services included lack of designated staff, high patient volume, resources, patient population geographic constraints, general awareness and acceptance of palliative care, and culture. CONCLUSIONS: Empowering local leaders and medical personnel to champion, design, and iterate using QI methods represents a promising powerful tool to spread palliative care services in developing countries.

Responding to Palliative Care Training Needs in the Coronavirus Disease 2019 Era: The Context and Process of Developing and Disseminating Training Resources and Guidance for Low- and Middle-Income Countries from Kerala, South India.

BACKGROUND: Palliative care has an important role to play in the global coronavirus disease 2019 (COVID-19) pandemic. It is integrated and is a key component in the governmental and community structures and services in Kerala, in India. Palliative care in the state has grown to be a viable model recognized in global palliative care and public health scene. The community network of palliative care, especially the volunteers linking with clinical teams, is a strong force for advocacy, relief support including provision of emergency medications, and clinical care. OBJECTIVE: To develop a palliative care resource tool kit for holistic care of patients affected with COVID-19 and to support the health-care workers looking after them to enable palliative care integration with COVID-I9 management. METHODS: The Kerala State government included senior palliative care advisors in the COVID-19 task force and 22 palliative care professionals formed a virtual task force named Palli COVID Kerala as an immediate response to develop recommendations. Results: Developed a palliative care in COVID-19 resource toolkit which includes an e-book with palliative care recommendations, online training opportunities, short webinars and voice over power point presentations. CONCLUSION: Integrated Palliative care should be an essential part of any response to a humanitarian crisis. The e resource tool kit can be adapted for use in other low- and middle-income countries.

Psychosocial Aspects of COVID-19 in the Context of Palliative Care - A Quick Review.

In a resource-poor country like India, where the health-care systems are difficult to access, overburdened, and unaffordable to many, the impact of the coronavirus disease 2019 (COVID-19) pandemic can be devastating. The increased burden of serious health-related suffering can impact the well-being of health-care workers, patients, and their families alike. The elderly, the frail, the vulnerable, and those with multiple comorbidities are disproportionately affected. Palliative care, with its comprehensive and inclusive approach, has much to offer in terms of alleviating the suffering, particularly those caused by the distressing physical and psycho-socio-spiritual symptoms, the complex medical decision-making, end-of-life care issues, and grief and bereavement, and needs to be integrated into the pathway of care provision in COVID-19. Psychosocial issues contribute to and amplify suffering and are often underestimated and undertreated and not accessible to many. Empowering frontline professionals in the core concepts of psychosocial support and palliative care thus becomes an absolute necessity. This quick review was done by a group of palliative care physicians and mental health experts from India to develop recommendations for physical and psychosocial care in the context of COVID-19. This review was done as part of that process and highlights the role and challenges of the psychosocial domain of palliative care in the context of COVID-19 situation in India.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Does continuous subcutaneous infusion of lignocaine relieve intractable pruritus associated with advanced cutaneous T-cell lymphoma? A retrospective case series review.

BACKGROUND: Intractable pruritus affects an estimated 83% of patients with advanced cutaneous T-cell lymphoma. Palliative care strategies to improve outcomes for these patients are lacking. Lignocaine antagonises kappa opioid antagonist-induced scratching in mice models and may relieve cutaneous T-cell lymphoma-pruritus. PRACTICE CHALLENGE: The aim of this retrospective case series was to evaluate our clinical experience with low-dose continuous subcutaneous infusion lignocaine for intractable pruritus associated with cutaneous T-cell lymphoma, from 2000 to 2015. The study received approval from Retrospective Review Panel, Division Cancer Medicine, 12 October 2015, V1.1. METHOD: Baseline demographics including cutaneous T-cell lymphoma diagnosis and management, comorbidities, and pruritus-related evaluation including onset, severity, past and current therapies were collected. Response categories (Complete, Partial, No, Unknown) were devised for the study, based on severity of pruritus, impact on sleep and mood. The mean of responses was calculated for each patient and across the series. OUTCOME: Nineteen patients received continuous subcutaneous infusion lignocaine, in 45 treatment episodes, ranging from 1 to 70 days (interquartile range = 5). Baseline mean number of adjuvants was 3.9 (range, 1-9). Across the series, complete response was achieved, on average, 26.7% days, partial response 49.4%, no response 16.1% and unknown response 9.2%. Drowsiness was documented in four patients. Three patients died during continuous subcutaneous infusion due to disease progression. LESSONS: Continuous subcutaneous infusion lignocaine offers another therapeutic option in cutaneous T-Cell lymphoma-related intractable pruritus. FUTURE RESEARCH: Prospective studies using validated assessment tools and systematic approaches to pruritus management are required.

Palliative care clinicians and online education in India: a survey.

BACKGROUND: Whether online resources can facilitate spread of palliative care knowledge and skills in India is an urgent question given few providers and a large, ageing population. OBJECTIVES: We surveyed needs and feasibility regarding e-learning. METHODS: Indian, Australian and North American palliative care experts developed an electronic survey using Qualtrics, emailed to all registrants of the 2017 Indian Association of Palliative Care (IAPC) conference and distributed during the conference. RESULTS: Of 60 respondents (66% men, 60% doctors), most worked in hospitals and had oncology backgrounds, and 35% were from Kerala and Tamil Nadu. Most (90.9%) received palliative care training in India or overseas with 41% trained in a Trivandrum Institute of Palliative Sciences residential course (4-6 weeks). 17% completed the IAPC essential certificate and 22% had undertaken various distance learning courses. Interest in online training was substantial for most aspects of palliative care. CONCLUSION: There was a high level of interest and reported feasibility in taking a case-based online course. This pilot survey provides support for online case-based education in India, particularly among physicians.