Stakeholder engagement as a strategy to enhance palliative care involvement in intensive care units: A theory of change approach.

BACKGROUND: Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in ICU through a stakeholder participatory approach. METHODS: Theory of Change approach was used to develop a hypothetical causal pathway for palliative care integration into ICUs in India. Four facilitated workshops and fifteen research team meetings were conducted virtually over three months. Thirteen stakeholders were purposively chosen, and three facilitators conducted the workshops. Data included workshop discussion transcripts, online chat box comments, and team meeting minutes. These were collected, analysed and represented as theory of change map. RESULTS: The desired impact of palliative care integration was good death. Potential long-term outcomes identified were fewer deaths in ICUs, discharge against medical advice, and inappropriate admissions; increased referrals to palliative care; and improved patient and family satisfaction. Twelve preconditions were identified, and eleven key interventions were developed. Five overarching assumptions related to contextual factors influencing the outcomes of interventions. CONCLUSION: Theory of change framework facilitated the identification of proposed mechanisms and interventions underpinning palliative care integration in ICUs.

Same storm, different boat: The global impact of COVID-19 on palliative care.

OBJECTIVE: The COVID-19 pandemic has had a complex and profound impact on the provision of palliative care globally. To support learning from palliative care providers and researchers worldwide, the Education Subcommittee of International Psycho-Oncology Society (IPOS) Palliative Care Special Interest Group developed a webinar with presentations by and discussion with eight international palliative care leaders. METHODS: Presentations were content rich; the speakers used both quantitative (e.g., sharing recent statistical findings) and qualitative (e.g., narrative storytelling, anecdotal experiences) approaches to portray the effect of COVID-19 in their region. Subsequent to the webinar, the committee collectively identified five themes conveyed by the presenters through consensus. RESULTS: The themes included: (1) altered accessibility to palliative care, with socio-economic status impacting virtual health availability; (2) reduced opportunities to preserve dignity, as survival has been prioritized over preserving the humanity of patients and their loved ones; (3) complicated grief and bereavement arising from social distancing requirements; (4) greater awareness of the importance of sustaining health provider well-being; and (5) the development of valuable innovations across nations, institutions, disciplines, and communities. CONCLUSIONS: Overall, the webinar facilitated valuable connection for global learning and identified opportunities for research and clinical interventions. In an ongoing crisis that has exacerbated isolation, we will need to continue to learn and lean on one another as a global community to navigate ongoing challenges of the COVID-19 pandemic.

COVID-19 Palliative and End-of-Life Care Plan: Development and Audit of Outcomes.

Objectives: Palliative care (PC) referral in serious and critical COVID-19 improves decision-making, health resource utilisation, end-of-life symptom management and family support. In this study, we explored developing a systematic decision-making matrix for PC referral in COVID-19 and audited its outcomes. Materials and Methods: A team of interdisciplinary experts developed a hospital COVID-19 PC plan. PC referral and outcomes of PC referral in hospitalised COVID-19 patients were audited. Results: Out of 1575 inpatients, 1066 (67.7%) had mild and 509 (32.3%) had serious and critical COVID-19 illness. Among 50 (3.1%) referred to PC, 5 (0.4%) had mild and 45 (8.8%) had serious and critical COVID-19 illness. Out of 45 serious and critical COVID-19 patients referred to PC, 38 (84%) received end-of-life care (EOLC), 4 (9%) self-discharged against medical advice and 3 (7%) recovered. Forty-seven (94%) were referred for goals-of-care discussion. About 78% received opioids, 70% benzodiazepines and 42% haloperidol for symptom management. Among 45 serious and critical COVID-19 patients referred to PC, foregoing life-sustaining treatment was documented in 43 (96%) but implemented only in 23 (53%). Out of 38 who received EOLC, ICU was the place of death in 31 (82%) and ward in 7 (18%). Conclusion: Despite interdisciplinary experts developing a hospital COVID-19 PC, low referral of serious and critical COVID-19 patients to PC was observed. PC referral enabled access to management of end-of-life symptoms and facilitated limitation of life-sustaining treatment in some COVID-19 patients with serious illness. Educating critical care physicians about the scope of PC in the COVID-19 setting might improve PC referral.

Palliative and end-of-life care in intensive care units in low- and middle-income countries: A systematically constructed scoping review.

PURPOSE: Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries MATERIALS AND METHODS: Scoping review with nine databases systematically searched for literature published in English on palliative care in intensive care units in low- and middle- income settings (01/01/1990 to 31/05/2021). Two reviewers independently checked search results and extracted textual data, which were analyzed and represented as themes. RESULTS: Thirty papers reported 19 empirical studies, two clinical case reports and six discussion papers. Papers originated from Asia and Africa, primarily using observational designs and qualitative approaches, with no trials or other robust evaluative or comparative studies. No studies directly sought data from patients or families. Five areas of research focus were identified: withholding and withdrawing treatment; professional knowledge and skills; patient and family views; culture and context; and costs of care. CONCLUSIONS: Palliative care in intensive care units in low-and middle-income countries is understudied. Research focused on the specific needs of intensive care in low- and middle-income countries is required to ensure optimal patient outcomes.

"Building palliative care capacity in cancer treatment centres: a participatory action research".

INTRODUCTION: There is a significant lack of palliative care access and service delivery in the Indian cancer institutes. In this paper, we describe the development, implementation, and evaluation of a palliative care capacity-building program in Indian cancer institutes. METHODS: Participatory action research method was used to develop, implement and evaluate the outcomes of the palliative care capacity-building program. Participants were healthcare practitioners from various cancer institutes in India. Training and education in palliative care, infrastructure for palliative care provision, and opioid availability were identified as key requisites for capacity-building. Researchers developed interventions towards capacity building, which were modified and further developed after each cycle of the capacity-building program. Qualitative content analysis was used to develop an action plan to build capacity. Descriptive statistics were used to measure the outcomes of the action plan. RESULTS: Seventy-three healthcare practitioners from 31 cancer treatment centres in India were purposively recruited between 2016 and 2020. The outcome indicators of the project were defined a priori, and were audited by an independent auditor. The three cycles of the program resulted in the development of palliative care services in 23 of the 31 institutes enrolled in the program. Stand-alone palliative care outpatient services were established in all the 23 centres, with the required infrastructure and manpower being provided by the organization. Morphine availability improved and use increased in these centres, which was an indication of improved pain management skills among the participants. The initiation and continuation of education, training, and advocacy activities in 20 centres suggested that healthcare providers continued to remain engaged with the program even after the cessation of their training cycle. CONCLUSION: This program illustrates how a transformational change at the organizational and individual level can lead to the development of sustained provision of palliative care services in cancer institutes.

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.

Maggots in the Intercostal Drain: Case Report of a Rare Presentation with a Brief Review of Literature.

Maggots are dipterous larvae of flies. Infestation of vertebrate animals (including humans) by maggots is termed as Myiasis. Warm and Humid climate, low socio-economic status, lack of knowledge and poor living conditions, malignant wounds predispose the cancer patients to maggot infestation in India. Apart from infestation in the wounds; oral, ophthalmic, nasal, aural, enteric, urogenital, trachea-pulmonary and rectal myiasis have been reported. Maggot infestation of the Intercostal drain (ICD) container without associated pleural myiasis is an extremely rare entity. We describe a rare case report of maggots in the ICD in a patient with metastatic chondrosarcoma femur with ICD in situ for malignant pleural effusion. Early detection and management are the keys to prevent the catastrophic complication of pleural myiasis.

Evaluating the Need for Integrated Pediatric Palliative Care Services in a Pediatric Oncology Setting: A Retrospective Audit.

OBJECTIVES: Early integrated palliative care has shown to improve the quality of life in patients with cancer. During the past decade, pediatric palliative care has become an established area of medical expertise, however due to scant information available regarding the triggers for referral and referral practice very few children receive a formal palliative care consult. MATERIALS AND METHODS: A retrospective audit of medical case records of pediatric oncology patients over a period of 1 year from September 30, 2019, to September 30, 2020, was conducted. Demographic details, diagnosis, staging, clinical parameters, reason for referral, and palliative care plan were captured in a predesigned pro forma. RESULTS: Among 126 children with cancer, 27 (21.4%) patients were referred to palliative care. Majority 21 (77%) referrals were inpatient consults. Symptom management 17 (44.7%) was the most common trigger for referral followed by referrals for psychosocial support 12 (14.4%). Children with solid tumors 16 (59%) were more often referred than hematological malignancies. Among those needing end of life care, 8 (88.8%) out of 9 families preferred home than hospital. CONCLUSION: Low incidence of palliative care referral and presence of symptoms as a trigger for palliative care referral suggests gaps in the integrated approach. The study findings prompt a review of palliative care referral criteria and referral practice in a pediatric oncology setting.

Symptom Management among Patients with Chronic Kidney Disease.

Patients with chronic kidney disease (CKD) experience high symptom burden, both physical and psychological, that is underrecognized and undertreated. The high symptom burden significantly impacts the quality of life for patients and their families. This review enumerates the various physical and psychological symptoms that patients with CKD often experience and guides in the management of these symptoms. This review follows the recommended international guidelines and has been tailored to suit the Indian context.

The Concept of Respite in Palliative Care: Definitions and Discussions.

PURPOSE OF THE REVIEW: The definition of respite care remains unclear and its purpose and effectiveness are unproven till date. This paper reviews the current evidence regarding definition and efficacy of respite care, as well as the different programs, models, and interventions employed to deliver the same. RECENT FINDINGS: A scoping search identified the relevant literature to be included in the review. The current evidence reiterates the lack of clarity in defining and delineating the purpose of respite care. Recent empirical evidence supports the effectiveness of respite care with clear benefits for the carers, patients, their families, and the healthcare system. Along with inpatient, home, and hospice care, respite care is considered as an essential component of palliative care. Evidence, although weak, supports the efficacy of respite care. High-quality studies with clear outlining of the scope of the services and resolution of ambiguities pertaining to its definition are warranted to fill the gaps in knowledge.

"PENS" approach for breaking bad news-a short and sweet way!

India has a distinct pattern of cancer care delivery, with unique sociocultural milieu and patient characteristics. In the current era of patient-centered and personalized care, there is an unmet need for an abbreviated protocol for breaking bad news to cancer patients suitable for the Indian outpatient setting. We propose a short four-step protocol for breaking bad news effectively and caringly, in the outpatient department of oncology clinics.

Impact of COVID-19 on oncology education and training in India.

Coronavirus disease-19 was declared a pandemic and global emergency in March 2020. Oncology education and training has been on a rollercoaster ride ever since. Despite major changes in the work environment, training for postgraduates in oncology has continued with various challenges. We discuss the changes brought about in education, training and assessments for oncology residents.

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.