Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework.

BACKGROUND: Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme. In this paper, we have explained and interpreted these strategic solutions through the lens of feedback intervention theory. METHODOLOGY: The study findings were interpreted using Kumar's six-step approach that enabled systematic evaluation of a theory's appropriateness and alignment with the researcher's paradigm, methodology, and study findings. It also explained how theory informed analysis and elucidated challenges or the development of new models. The feedback intervention theory appraises the discrepancy between actual and desired goals and provides feedback to improve it. RESULTS: Strategic solutions generated from the study findings were coherent with the aspects elucidated in theory, like coping mechanisms, levels of feedback hierarchy, and factors determining the effect of the feedback intervention on performance. Paediatric oncologists suggested integrating palliative care providers in the team innocuously, improving communication between teams, relabelling palliative care as symptom control, and working with a skilled and accessible palliative care team. The paper proposes an infinite loop model developed from the study, which has the potential to foster integrated palliative care through excellent collaboration and continuous feedback. CONCLUSION: Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology.

Palliative and end-of-life care practices for critically ill patients and their families in a peri-intensive care setting: A protocol for an umbrella review.

OBJECTIVES: This umbrella review will summarize palliative and end-of-life care practices in peri-intensive care settings by reviewing systematic reviews in intensive care unit (ICU) settings. Evidence suggests that integrating palliative care into ICU management, initiating conversations about care goals, and providing psychological and emotional support can significantly enhance patient and family outcomes. METHODS: The Joanna Briggs Institute (JBI) methodology for umbrella reviews will be followed. The search will be carried out from inception until 30 September 2023 in the following databases: Cochrane Library, SCOPUS, Web of Science, CINAHL Complete, Medline, EMBASE, and PsycINFO. Two reviewers will independently conduct screening, data extraction, and quality assessment, and to resolve conflicts, adding a third reviewer will facilitate the consensus-building process. The quality assessment will be carried out using the JBI Critical Appraisal Checklist. The review findings will be reported per the guidelines outlined in the Preferred Reporting Items for Overviews of Reviews statement. RESULTS: This umbrella review seeks to inform future research and practice in critical care medicine, helping to ensure that end-of-life care interventions are optimized to meet the needs of critically ill patients and their families.

Utility of Clinical Variables for Deciding Palliative Care in Paraquat Poisoning: A Retrospective Study.

Background: Patients with paraquat poisoning (PP) have a mortality rate comparable to that of advanced malignancies, yet palliative care is seldom considered in these patients. This audit aimed to identify triggers for early palliative care referral in critically ill patients with PP. Methods: Medical records of patients with PP were audited. Predictors of mortality within 48 hours of hospitalization and 24 hours of intensive care unit (ICU) admission were considered as triggers for palliative care referral. Results: Among 108 patients, 84 complete records were analyzed, and 53 out of 84 (63.1%) expired. Within 48 hours after hospitalization, the lowest oxygen partial pressure in arterial blood to a fraction of inspired oxygen [the ratio of partial pressure of oxygen in arterial blood (PaO2) to the fraction of inspiratory oxygen concentration (FiO2) (PaO2/FiO2)] was the independent predictor of mortality, cut-off ≤ 197; the area under the curve (AUC), 0.924; sensitivity, 97%; specificity, 78%; p <0.001; and 95% confidence interval (CI): 0.878-0.978. Kaplan-Meier survival plot showed that the mean survival time of patients with the lowest PaO2/FiO2, ≤197, was 4.64 days vs 17.20 days with PaO2/FiO2 >197 (log-rank p < 0.001). Sequential organ failure assessment (SOFA) score within 24 hours of ICU admission had a cut-off ≥9; AUC, 0.980; p < 0.001; 95% CI: 0.955-1.000; 91% sensitivity; and 90% specificity for mortality prediction. Out of the total of 84 patients with PP analyzed, there were 11 patients admitted to the high dependency units (13.1%) and 73 patients admitted to the ICU (86.9%). Out of the total of 84 patients of PP in whom data was analyzed, 53 (63.1%) patients required ventilator support. All the 53 patients who required ventilator support due to worsening hypoxemia, eventually expired. Conclusion: The lowest PaO2/FiO2 ≤ 197 within 48 hours of hospitalization, SOFA score ≥9 within 24 hours of ICU admission or need for mechanical ventilation are predictors of mortality in PP patients, who might benefit from early palliative care. How to cite this article: Rao S, Maddani SS, Chaudhuri S, Bhatt MT, Karanth S, Damani A, et al. Utility of Clinical Variables for Deciding Palliative Care in Paraquat Poisoning: A Retrospective Study. Indian J Crit Care Med 2024;28(5):453-460.

Development and validation of a questionnaire to explore preferences of patients, family caregivers, and kidney care providers on advance care planning in an end-stage kidney disease setting.

OBJECTIVES: To develop and validate an English and Kannada version of the questionnaire to assess awareness and knowledge of advance care planning (ACP) among end-stage kidney disease (ESKD) patients, caregivers, and healthcare providers. METHODS: The questionnaire was developed from the published literature on ACP use in ESKD setting after a literature search. An expert panel consisting of nephrologists, palliative medicine physicians, ESKD patients, and their family caregivers participated in the content validity of the questionnaire using the Delphi process. The study was conducted between August 2021 and July 2022 at a tertiary care hospital in India. A validated questionnaire was administered to eligible 30 ESKD patients, 30 caregivers, and 10 health care professionals. A retest was carried out 1 week after the first administration. RESULTS: The content validity ratio of patient, caregiver, and health care professions questions ranged from 0.6 to 1 and Cronbach's α value was 0.737 to 0.925. The intraclass correlation coefficient values for the test-retest of all three sections of this questionnaire varied from 0.879 to 0.972. SIGNIFICANCE OF RESULTS: The developed questionnaire is a reliable and valid method for assessing the preference and knowledge of ACP in ESKD patients, family caregivers, and kidney care providers both in English and Kannada.

Kannada Translation and Validation of the ESAS-r Renal for Symptom Burden Survey in Patients with End-Stage Kidney Disease.

Objectives: End-stage kidney disease (ESKD) is a life-limiting illness that leads to significant health-related suffering for the patients and their caregivers. Moreover, disease-directed options such as dialysis and renal transplant might not be universally accessible. Inadequate assessment and management of symptoms often lead to diminished quality of life. For evaluating symptoms and their associated distress, various tools have been identified. However, these are not available for the native Kannada-speaking population for assessing ESKD symptom burden. In this study, we determined the reliability and validity of the Edmonton Symptom Assessment System Revised Renal (ESAS-r: Renal) in Kannada-speaking ESKD patients. Materials and Methods: ESAS-r: Renal English version was translated into Kannada using the forward and backward method. The translated version was endorsed by Nephrology, Palliative care, Dialysis technology and Nursing experts. As a pilot study, 12 ESKD patients evaluated the content of the questionnaires for appropriateness and relevance. The ESAS-r: Renal Kannada version was validated by administering this tool to 45 patients twice a fortnight. Result: The translated ESAS-r: Renal Kannada version questionnaire had an acceptable face and content validity. Experts' opinion was assessed by content validity ratio (CVR), and the value of CVR of ESAS-r: Renal Kannada version was-'1'-. Internal consistency of the tool was assessed among Kannada-speaking ESKD patients; its Cronbach's α was 0.785, and test-retest validity was 0.896. Conclusion: The validated Kannada version of ESAS-r: Renal was reliable and valid for assessing symptom burden in ESKD patients.

Role of Respite Palliative Care in Understanding and Managing Complex Palliative Care Situation - A Case Report.

Introduction: The concept of total pain encompasses a person's physical, psychological, social, spiritual, and practical struggles. Effective pain and symptom management are the core elements of palliative care which aims at reducing suffering and improving quality of life (QOL) throughout the course of illness and need to be addressed with multidisciplinary coordinated approach in a timely manner. It may be challenging for palliative care providers to address all these distressing issues during short out-patient consultations. Hence, Respite Palliative Care Unit (RPCU) is an appropriate place to provide holistic patient care. Case Description: A 59-year-old widow, from Muslim community, was following up with Palliative Medicine out-patient department for management of progressively increasing chest pain with frequent exacerbations. She remained unsatisfied with the pain management and reported moderate to severe intensity of pain despite maximal pain management using multimodal approaches. We planned to systematically explore and address the issues leading to uncontrolled pain and distress. The patient was admitted to RPCU for holistic pain management and continuity of care. We explored and addressed the complex psycho-socio-spiritual aspects contributing to the total pain experience to achieve better symptom control and improve her overall well-being. Conclusion: This case report emphasizes the role of RPCU in effective and holistic management of psychosocial, spiritual issues, difficult communication, and advanced care planning. This model of palliative care can be a valuable addition to various health-care set-ups in the developing countries for improvement of patient care.

Development of a model of Home-based Cancer Palliative Care Services in Mumbai - Analysis of Real-world Research Data over 5 Years.

Objectives: Patients needing palliative care prefer to be cared for in the comfort of their homes. Although private home health-care services are entering the health-care ecosystem in India, for the majority it is still institution-based. Here, we describe a model of home-based palliative care developed by the Tata Memorial Hospital, a government tertiary care cancer hospital. Materials and Methods: Data on patient demographics, services provided and outcomes were collected prospectively for patients for the year November 2013 - October 2019. In the 1st year, local general physicians were trained in palliative care principles, bereavement services and out of hours telephone support were provided. In the 2nd year, data from 1st year were analysed and discussed among the study investigators to introduce changes. In the 3rd year, the updated patient assessment forms were implemented in practice. In the 4th year, the symptom management protocol was implemented. In the 5th and 6th year, updated process of patient assessment data and symptom management protocol was implemented as a complete model of care. Results: During the 6 years, 250 patients were recruited, all suffering from advanced cancer. Home care led to good symptom control, improvement of quality of life for patients and increased satisfaction of caregivers during the care process and into bereavement. Conclusion: A home-based model of care spared patients from unnecessary hospital visits and was successful in providing client centred care. A multidisciplinary team composition allowed for holistic care and can serve as a model for building palliative care capacity in low- and middle-income countries.

Developing a Screening Tool for Serious Health-related Suffering for Low- and Middle-Income Countries - Phase-1: Domain Identification and Item Generation.

Objectives: The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care. Materials and Methods: Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling. Results: The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient's preference. Conclusion: The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings.

Organizational Strategies for Providing Cancer Palliative Care to Many.

PURPOSE: Hospitals and healthcare organizations are today operating in an extremely competitive environment, with increasing pressure to improve quality while reducing costs. In responding to this dynamic situation, transformation of any organization requires the will to organize delivery around the needs of patients. RECENT FINDINGS: Providing palliative care to the many who require it needs the value agenda to be formulated based on mutually reinforcing components. Here we present an overview of the framework for a palliative care department in a comprehensive cancer center, which includes different levels that are embedded within a comprehensive system. Detailed information on each level is presented, followed by a discussion of quality of care, as an integrating theme for the framework. The chapter concludes by detailing the benefits that a comprehensive cancer palliative care center provides to a country's healthcare efforts through service, education, research, and advocacy.

Approaches and Best Practices for Managing Cancer Pain within the Constraints of the COVID-19 Pandemic in India.

Novel corona virus disease 2019 (COVID-19) is an ongoing pandemic that has impacted the entire world. The Indian government has responded strongly and very stringently to the crisis, through a nationwide lockdown. The health-care (HC) systems in the country are striving hard to maintain equitable care across illness spectra, while responding the emergencies imposed by the COVID-19 crisis. Under these circumstances, guidelines for managing several diseases including that for cancer care have been modified. As modified guidelines for cancer care have their focus on disease management, cancer pain management and maintaining continuity of care for patients with advanced progressive disease have taken a backseat in the available cancer care guidelines. This article describes the challenges, approaches to solutions with evidence-based practices that can be utilized to ensure competent management of cancer pain during the COVID-19 pandemic in India. It provides an overview of adapting to telehealth consultations for identification, evaluation and management of cancer pain, safe and rational use of analgesics and adjuvant drugs, recognizing and responding to holistic care needs and addressing the total pain, ensuring continuity of pain management, and strategies when complying with narcotic drug regulations, while ensuring safety of patients and HC providers.

Palliative Care in Coronavirus Disease 2019 Pandemic: Position Statement of the Indian Association of Palliative Care.

The global pandemic involving severe acute respiratory syndrome-coronavirus-2 has brought new challenges to clinical practice and care in the provision of palliative care. This position statement of the Indian Association of Palliative Care (IAPC) represents the collective opinion of the experts chosen by the society and reports on the current situation based on recent scientific evidence. It purports to guide all health-care professionals caring for coronavirus disease 2019 (COVID-19) patients and recommends palliative care principles into government decisions and policies. The statement provides recommendations for palliative care for both adults and children with severe COVID-19 illness, cancer, and chronic end-stage organ impairment in the hospital, hospice, and home setting. Holistic care incorporating physical, psychological, social, and spiritual support for patients and their families together with recommendations on the rational use of personal protective equipment has been discussed in brief. Detailed information can be accessed freely from the website of the IAPC http://www.palliativecare.in/. We hope that this position statement will serve as a guiding light in these uncertain times.

High Prevalence of Dyspnea in Lung Cancer: An Observational Study.

INTRODUCTION: Dyspnea is a subjective, multidimensional experience of breathing discomfort, commonly seen in patients with advanced cancer. This study is a secondary analysis to seek the clinical prevalence of dyspnea on a subset of patients with lung cancer. Improving the quality of life (QoL) in dyspnea requires aggressive symptom management, which in turn entails a detailed understanding of its symptomatology. MATERIALS AND METHODS: This was a subset analysis of lung cancer patients of a prospective observational study done over 6 months from April to September 2014 at the Department of Palliative Medicine, Tata Memorial Centre (Mumbai). RESULTS AND CONCLUSIONS: About 71.43% of the patients with advanced lung cancer experienced dyspnea. Dyspnea increased with worsening fatigue, anxiety, appetite, and well-being. Patients described it as an increased sense of effort for breathing, and it lowered the QoL substantially.

Intramedullary Spinal Cord Metastases of Malignant Melanoma: A Rare Case Report on Paraplegia in Palliative Care.

Rates of malignant melanoma have been increasing in frequency. Studies have shown that up to 46% of patients with melanoma will experience metastases to the central nervous system. Intramedullary spinal cord metastasis of malignant melanoma is rare. In advanced cancers, surgery might not be possible, and radiotherapy with corticotherapy is a viable option. In the following case, a 54-year-old male presented to the clinic with an intramedullary tumor in the D1 region. He was successfully managed with an integrated palliative care approach with concomitant cancer-directed therapy.

Prevalence and Intensity of Dyspnea in Advanced Cancer and its Impact on Quality of Life.

CONTEXT: Dyspnea is a subjective, multidimensional experience of breathing discomfort, commonly seen in patients with advanced cancer. To find the impact of dyspnea on the quality of life in this population, it is important to understand the prevalence and factors influencing dyspnea. AIMS: This study aimed to determine the prevalence, intensity, and factors influencing dyspnea in advanced cancer and determine its impact on overall quality of life. SETTINGS AND DESIGN: This was a prospective cross-sectional study. The prevalence of dyspnea and its impact on quality of life was determined in 500 patients registered with palliative medicine outpatient department. SUBJECTS AND METHODS: The patients were asked to fill a set of questionnaires, which included the Cancer Dyspnea Scale (translated and validated Hindi and Marathi versions), visual analog scale for dyspnea and EORTC QLQ C 15 PAL. Details of demographics, symptomatology, and medical data were collected from the case record sheets of the patients. STATISTICAL ANALYSIS USED: Descriptive statistics, univariate, and multiple regression analysis were used to calculate the results. RESULTS: About 44.37% of the patients experienced dyspnea. Dyspnea increased with worsening anxiety, depression, fatigue, appetite, well-being, pain, lung involvement by primary or metastatic cancer, performance status, and deteriorating overall quality of life and emotional wellbeing. CONCLUSIONS: The prevalence of dyspnea in advanced cancer patients is as high as 44.37% and has a negative impact on their overall quality of life.

Exploring Education and Training Needs in Palliative Care among Family Physicians in Mumbai: A Qualitative Study.

CONTEXT: Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients. AIMS: This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. SETTINGS AND DESIGN: Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. SUBJECTS AND METHODS: Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes. RESULTS AND CONCLUSIONS: FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.

Bradycardia with Syncope in Carotid Sinus Syndrome: A Rare Case Report in Palliative Care.

Emergencies in palliative care need to be defined by the potential distress that a clinical issue raises for a person. A 58-year-old male with carcinoma vallecula referred for palliative care presented with recurrent syncopal attacks. On examination, a swelling at the left angle of mandible pressing on the carotid sinus was detected. A clinical diagnosis of carotid sinus syndrome was made, which is an exaggerated response to carotid sinus baroreceptor stimulation and results in dizziness or syncope from transient diminished cerebral perfusion. Rapid identification and judicious interventions in time (cardiac consultation, intravenous atropine 0.5 mg, and temporary pacemaker implantation) were able to manage a potentially correctable cardiovascular emergency in his case.

Economics of Palliative and End-of-Life Care in India: A Concept Paper.

Only a few studies have assessed the economic outcomes of palliative care in India. The major areas of interest include hospice care, the process and structure of care, symptom management, and palliative chemotherapy compared to best supportive care. At present, there is no definite health-care system followed in India. Medical bankruptcy is common. In situations where patients bear most of the costs, medical decision-making might have significant implications on economics of health care. Game theory might help in deciphering the underlying complexities of decision-making when considered as a two person nonzero sum game. Overall, interdisciplinary communication and cooperation between health economists and palliative care team seem necessary. This will lead to enhanced understanding of the challenges faced by each other and hopefully help develop ways to create meaningful, accurate, and reliable health economic data. These results can then be used as powerful advocacy tools to convince governments to allocate more funds for the cause of palliative care. Eventually, this will save overall costs and avoid unnecessary health-care spending.

Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit.

PURPOSE: To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services. PATIENTS AND METHODS: Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from January 1, 2010 to December 31, 2014. Descriptive summaries of demographic, clinical variables, and patient circumstances at the time of referral and during end-of-life care were examined. RESULTS: A total of 1135 patients were referred from pediatric oncology with a gradual increasing trend over 5 years. About 84.6% consultations took place in the outpatient setting. In 97.9% of the cases, parents were the primary caregivers. Availability of specialist pediatric health-care services at local places was available in 21.2% cases and 48% families earned <5000 INR (approximately 73 USD) in a month. Around 28.3% of the referrals were from leukemia clinic and maximum references were late with 72.4% patients having advanced disease at presentation. 30.3% of the referrals were made for counseling and communication and 54.2% had high symptom burden during referral. After referral, 21.2% patients continued with oral metronomic chemotherapy and 10.5% were referred back to oncology services for palliative radiotherapy. Only 4.9% patients had more than 2 follow-ups. 90.8% of the patients were cared for at home in the last days of illness by local general practitioners. 70.6% of the deaths were anticipated. CONCLUSIONS: Oncologists referred patients late in the course of disease trajectory. Most of the referrals were made for counseling and communication, but many patients had high symptom burden during referral.

Specialist Pediatric Palliative Care Prescribing Practices: A Large 5-year Retrospective Audit.

INTRODUCTION: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. METHODS: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014) to evaluate prescribing practices in children with advanced cancer. RESULTS: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%), and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. CONCLUSIONS: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription noncompliance by almost two-thirds of patients is alarming and necessitates intense patient, family, and caregiver education and empowerment.