Psychiatric disorders in older adults with cancer referred to psycho-oncology service in a tertiary care cancer centre: a 7-year real world experience from India.

BACKGROUND: Cancer affects mental health in older adults with cancer (OAC), affecting almost 50% of the patients. There are only a few studies on psychiatric disorders in OAC, especially in low resource settings. We report on our real-world experience of prevalence of and factors associated with psychiatric disorders in OAC referred to a psycho-oncology service in an Indian tertiary care cancer institute. METHODS: We retrospectively analysed medical and psycho-oncology records of patients aged 60 + on cancer-directed treatment or follow-up for < 2 years after treatment completion, referred to psycho-oncology services in a tertiary care cancer centre in Mumbai, India, from Jan 2011-Dec 2017. We recorded sociodemographic, clinical, and treatment-related variables, as well as past psychiatric disorders. The ICD-10 was used to record current psychiatric disorder type and presence. IBM SPSS version 24 (Armonk, NY, USA) was used for descriptive measures, tests of association, and logistic regression analysis. The study protocol was approved by Institutional Ethics Committee and registered with the Clinical Trials Registry-India (CTRI/2020/06/026095). RESULTS: Of 763 patients included in the study, 475 (62.3%) were males and 436 (57.1%) were inpatients, with a median age of 65 years. 93% of the patients had a solid tumour and 207 (27.1%) had a history of psychiatric disorder. A current psychiatric diagnosis was noted in 556 patients (72.9%) on initial presentation, of which adjustment disorders, delirium and depression and anxiety disorders were most frequently seen in 25.2%, 21% and 11.1%, respectively. On univariate analysis, a past history of psychiatric disorders (χ2 = 34.6, p < 0.001), lower performance status (χ2 = 9.9, p = 0.002) and haematolymphoid malignancy (χ2 = 4.08, p = 0.04) significantly increased the risk of current psychiatric diagnosis. Logistic regression confirmed these variables as significant. CONCLUSION: Older adults with cancer referred to psycho-oncology services have high rates of psychiatric disorders at their initial presentation, mainly adjustment disorders, delirium and depression and anxiety. A past history of psychiatric disorders, lower performance status and haematolymphoid cancers significantly increased the risk of psychiatric disorders. Multidisciplinary psycho-oncology teams including a psychiatrist should be integrated in comprehensive care of this group of patients. Further research outcomes and effect of psycho-oncological interventions is required in older adults with cancer in LMIC settings.

Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit.

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

Psychological distress in primary caregivers of children with cancer during COVID-19 pandemic-A single tertiary care center experience.

OBJECTIVE: Families of children with cancer undergoing treatment during COVID-19 pandemic represent a vulnerable population for psychological distress and early identification and remedial measures are imperative for wellbeing of both the children and the caregivers. This article reports the results of assessment of psychological distress in primary caregivers of children with cancer undergoing treatment at a tertiary care center. METHODS: Primary caregivers of children with cancer (≤15 years) taking treatment at our institute during the period of July 2020 to August 2020 were prospectively evaluated for psychological distress using Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) tools over a telephonic call. There were 2 cohorts, A and B (50 participants each) depending on whether child was diagnosed with COVID-19 or not respectively during the study period. RESULTS: The assessment tool, PHQ-9 showed a score of ≥10 in 13% (n = 13) participants (95%CI:7.1%-21.2%) in the entire cohort and in 16% (n = 8, 95%CI:5.8%-26.2%) and 10% (n = 5, 95%CI:1.7%-18.3%) participants in cohort A and cohort B respectively. GAD-7 showed a score of ≥8 in 18% (n = 18) participants (95%CI:11.0%-27.0%) in the entire cohort and in 20% (n = 10, 95%CI:8.9%-31.1%) and 16% (n = 8, 95%CI:5.8%-26.2%) participants in cohort A and cohort B respectively. All participants were assessed, and supportive psychotherapeutic interventions administered over telephonic call. CONCLUSIONS: Primary caregivers should be assessed and followed up for psychological distress irrespective of other co-existing factors. Robust support systems built over time could help withstand the exceptional strain of a major surge during a pandemic.

Impact of the COVID pandemic on survivors of childhood cancer and survivorship care: lessons for the future.

PURPOSE: The COVID pandemic has greatly impacted cancer care, with survivorship care being accorded low priority. We aimed to assess the impact of the COVID pandemic on survivorship services at our centre, as well as on survivors of childhood cancer (CCS). METHODS: We analyzed the trends in survivorship care at our centre from March 2020 to June 2021 compared to previous years. We also conducted an online survey of adolescent and young adult (AYA-CCS) following up at the After Completion of Treatment Clinic, Mumbai, to assess the impact of the COVID pandemic and ensuing restrictions on our cohort of survivors. Sibling responses were used as comparator (CTRI/2020/11/029029). RESULTS: There was a decrease in in-person follow-ups and increase in remote follow-ups over the first few months of the pandemic. While in-person visits steadily increased after October 2020 and reached pre-pandemic numbers, distant follow-ups continue to be higher than pre-pandemic. Evaluable responses from the survey of 88 AYA-CCS and 25 siblings revealed new-onset health concerns in 29.5% of AYA-CCS, missed follow-up visit in 52% and varying degrees of mental health issues in 12.5%. While most survivors were able to cope with the stresses of the pandemic, 20% of siblings reported being unable to cope. CONCLUSIONS: Survivorship services continue to be affected well into the pandemic, with increased use of distant follow-ups. While AYA-CCS experienced significant physical, mental health issues and psychosocial concerns as a result of the COVID pandemic, they coped better than siblings during this stressful time, possibly due to multiple, holistic support systems including family, peer support groups and healthcare team.

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.

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.

Documentation of Assessment of Spiritual Concerns of Adult Advanced Cancer Patients: An Audit in a Hospital-based Specialist Palliative Care Service.

OBJECTIVES: Spirituality is a significant dimension of quality palliative care service provision. The purpose of our audit was to assess current practice and improve documentation of spiritual concerns of adult advanced cancer patients in a specialist palliative care (SPC) service in a tertiary care cancer centre. MATERIALS AND METHODS: In a standard-based audit, we measured the percentage of patient assessment forms with documentation of assessed spiritual concerns at a baseline and reaudit after practice change measures. We set the optimum standard that at least 60% of the case forms would have patients' spiritual concerns recorded. We implemented the following measures - (1) engaging our palliative care staff in team discussions on existing practice and identifying problems and (2) conducting a structured 2 h training module for assessment and documentation of patients' spiritual concerns. RESULTS: About 70.8% and 93.4% of the patient assessment forms included had documentation of assessed spiritual concerns which is higher than the standard we set at 60% and 90% at baseline and after implementing practice change, respectively. In the reaudit, we found that documentation specific to spirituality and overall psychological assessment improved. We identified that a persisting problem was the lack of recording of spiritual assessment in the patients' follow-up notes. CONCLUSION: We achieved the benchmark of a standard-based audit on documentation of assessed spiritual concerns of advanced cancer patients in our SPC service. Regular audits in clinical service delivery and documentation should be integrated into quality improvement measures in palliative care.

Shared Decision-Making, Advance Care Planning for Chronic Kidney Disease Patients.

Advance care planning (ACP) is a process by which clinicians together with patients and families reflect on and outline care goals to inform current and future care. ACP or shared decision-making is not only about key medical decisions, such as decision about continuing dialysis, or agreement for "not for resuscitation" order when in hospital. The importance of its role in chronic kidney disease (CKD) patients is less known and not being well practiced in our country. When done well, it involves enhancement of final days, weeks, and months with positive decisions about family relationships, resolution of conflict, and living well until end of life, improved quality of life, decreased anxiety and depression among family members, reduced hospitalizations, increased uptake of hospice and palliative care services, and care that concurs with patient preferences. It lays out a set of relationships, values, and processes for approaching end-of-life decisions for the patient. It also includes attention to ethical, psychosocial, and spiritual issues relating to starting, continuing, withholding, and stopping dialysis. This workshop was done to sensitize ACP as a standard of care intervention in the management of CKD in our country.

Implementation of an Early Palliative Care Referral Program in Lung Cancer: A Quality Improvement Project at the Tata Memorial Hospital, Mumbai, India.

OBJECTIVES: Access to early palliative care (EPC) for all patients with metastatic lung cancer is yet to be achieved in spite of recommendations. This quality improvement (QI) project was initialized to improve the rates of such referrals from the thoracic oncology clinic for all new outpatients in a premier cancer center in India. MATERIALS AND METHODS: Change in the proportion of patients receiving referrals for EPC during and after intervention (April-May 2018), compared to baseline (January-March 2018) were explored. Interventions included understanding of the process flow, identification of key drivers, and root cause analysis which identified the gaps as lack of documentation for EPC. Teaching and encouraging staff at the clinic to incorporate referrals into all initial visits for patients with metastatic lung cancer were incorporated. RESULTS: The bundle of QI interventions increased referrals from an average of 50% to 75%, mean difference = 12.64 (standard deviation = 10.13) (95% confidence interval = 22.01-3.29), P = 0.016 (two-tailed) on paired sample test. CONCLUSION: Improved referral rates for EPC in a multidisciplinary cancer clinic is possible with a QI project. This project also identifies the importance of data documentation and patient information processes that can be targeted for improvement.

How the COVID-19 Pandemic Experience has Affected Pediatric Palliative Care in Mumbai.

INTRODUCTION: The COVID 19 pandemic has created difficulties for children registered under Children's Palliative Care in Mumbai. 2 hospitals who have started Services last year would like to share their experiences on difficulties faced by Children and their families and unique ways in which solutions were found to help them surmount all odds. RESULTS: Some difficulties faced included transport to visit hospitals for doctor's care and essential medications; for those in native place, unavailability of doctors and medications. Difficulty to return home for those from out of Mumbai and vice versa. Unavailability of rations for those who were not original Mumbai residents. CONCLUSIONS: Unique solutions were found for each family. These are presented in this paper.

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.

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.

Reversal of Opioid-Induced Toxicity.

Opioids are commonly used for pain control in palliative care setting. Accumulation of active metabolites of opioids can cause a well-recognized toxidrome including respiratory depression (RD), decreased conscious level, pinpoint pupils, and drop in blood pressure. Opioid toxicity is often associated with amount ingested and its speed of absorption in the body. This can have life-threatening effects on various body systems. Naloxone is an opioid antagonist that competitively binds to opioid receptors and reverses all their effects. The indication for use is RD because of known or suspected opioid overdose. This article presents a case report of 61-year-old female, a case of advanced pancreatic cancer, progressed on disease-modifying treatments and referred to palliative care for best supportive care. She developed features of morphine toxicity that was promptly identified and managed with use of naloxone and other supportive measures.

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.

A Study to Assess the Feasibility of Introducing Early Palliative Care in Ambulatory Patients with Advanced Lung Cancer.

PURPOSE: Early palliative care is beneficial in advanced lung cancer patients. We aimed to assess the feasibility of introducing early palliative care in ambulatory advanced lung cancer patients in an Indian tertiary cancer center. METHODOLOGY: In a longitudinal, single-arm, and single-center study, fifty patients were recruited and followed up every 3-4 weeks for 6 months, measuring the symptom burden using Edmonton Symptom Assessment Scale (ESAS) and quality of life (QoL) with European Organization for Research and Treatment of Cancer-QoL tools. The primary end point of feasibility was that at least 60% of the patients should complete 50% of the planned palliative care visits and over 50% of the patients should complete QoL questionnaires. Analysis was done using Statistical Package for the Social Sciences version 20. RESULTS: Twenty-four of fifty patients (48%) completed the planned follow-up visits. All patients completed the questionnaires at baseline and 31 (62%) at their follow-up visits. The patients' main reasons for not following up in the hospital palliative care clinic were logistics and fatigue. Tiredness, pain, and appetite loss were the highest rated symptoms at baseline (ESAS scores 3, 2.2, and 2.1, respectively). Improvement in pain and anxiety scores at follow-up visits 1 and 2 was significant (P < 0.05). Scores on QoL functioning scales improved during the follow-up period. CONCLUSIONS: We did not meet the feasibility criteria for the introduction of early palliative care in our advanced lung cancer patients in a resource-limited country.

Intensive Care Unit death and factors influencing family satisfaction of Intensive Care Unit care.

INTRODUCTION: Family satisfaction of Intensive Care Unit (FS-ICU) care is believed to be associated with ICU survival and ICU outcomes. A review of literature was done to determine factors influencing FS-ICU care in ICU deaths. RESULTS: Factors that positively influenced FS-ICU care were (a) communication: Honesty, accuracy, active listening, emphatic statements, consistency, and clarity; (b) family support: Respect, compassion, courtesy, considering family needs and wishes, and emotional and spiritual support; (c) family meetings: Meaningful explanation and frequency of meetings; (d) decision-making: Shared decision-making; (e) end of life care support: Support during foregoing life-sustaining interventions and staggered withdrawal of life support; (f) ICU environment: Flexibility of visiting hours and safe hospital environment; and (g) other factors: Control of pain and physical symptoms, palliative care consultation, and family-centered care. Factors that negatively influenced FS-ICU care were (a) communication: Incomplete information and unable to interpret information provided; (b) family support: Lack of emotional and spiritual support; (c) family meetings: Conflicts and short family meetings; (d) end of life care support: Resuscitation at end of life, mechanical ventilation on day of death, ICU death of an elderly, prolonged use of life-sustaining treatment, and unfamiliar technology; and (e) ICU environment: Restrictive visitation policies and families denied access to see the dying loved ones. CONCLUSION: Families of the patients admitted to ICU value respect, compassion, empathy, communication, involvement in decision-making, pain and symptom relief, avoiding futile medical interventions, and dignified end of life care.

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.