"So we brought these players together": a qualitative study of educators' experiences to analyze the challenges of creating an e-learning program for neuropalliative care.

BACKGROUND: In recent years, the subspecialty of neuropalliative care has emerged with the goal of improving the quality of life of patients suffering from neurological disease, though gaps remain in neuropalliative care education and training. E-learning has been described as a way to deliver interactive and facilitated lower-cost learning to address global gaps in medical care. We describe here the development of a novel, international, hybrid, and asynchronous curriculum with both self-paced modules and class-based lectures on neuropalliative care topics designed for the neurologist interested in palliative care, the palliative care physician interested in caring for neurological patients, and any other physician or advanced care providers interested in neuropalliative care. METHODS: The course consisted of 12 modules, one per every four weeks, beginning July 2022. Each module is based on a case and relevant topics. Course content was divided into three streams (Neurology Basics, Palliative Care Basics, and Neuropalliative Care Essentials) of which two were optional and one was mandatory, and consisted of classroom sessions, webinars, and an in-person skills session. Evaluation of learners consisted of multiple choice questions and written assignments for each module. Evaluation of the course was based on semi-structured qualitative interviews conducted with both educator and learner, the latter of which will be published separately. Audio files were transcribed and underwent thematic analysis. For the discussion of the results, Khan's e-learning framework was used. RESULTS: Ten of the 12 participating educators were interviewed. Of the educators, three identified as mid-career and seven as senior faculty, ranging from six to 33 years of experience. Nine of ten reported an academic affiliation and all reported association with a teaching hospital. Themes identified from the educators' evaluations were: bridging the global gap, getting everybody on board, defining the educational scope, investing extensive hours of voluntary time and resources, benefiting within and beyond the curriculum, understanding the learner's experience, creating a community of shared learning, adapting future teaching and learning strategies, and envisioning long term sustainability. CONCLUSIONS: The first year of a novel, international, hybrid, and asynchronous neuropalliative care curriculum has been completed, and its educators have described both successes and avenues for improvement. Further research is planned to assess this curriculum from the learner perspective.

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.

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.

Palliative care to support the needs of adults with neurological disease.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

Advance Care Planning in India: Current status and future directions. A short narrative review.

India is undergoing economic, demographic and epidemiologic transitions. The healthcare industry is expanding rapidly as the burden of non-communicable diseases increases. The Indian Supreme Court [1] has recently enabled Advance Medical Directives (AMD). Implementation of Advance Care Planning (ACP) will depend on civil society and the palliative care sector until government support is available.

International models of neuropalliative care.

Can equitable Neuropalliative care (NpC) be delivered globally? This chapter surveys existing services and ground realities in different parts of the world. In many countries, universal healthcare (UHC) seems to have been a precondition for the establishment of palliative care (PC). PC has been recognized as a basic human right as a part of UHC. Quality of Death and PC surveys provide an overview of the existing situation. Currently, PC is largely focused on the needs of cancer patients and this is a legacy issue for professionals and systems. Communities however recognize suffering and do not distinguish between medical diagnoses. The development of NpC as a subspecialty of neurology allows neurologists everywhere to become primary palliative care providers for their own patients. It is also necessary to integrate neurology with existing palliative care services. There is much that can be done to improve NpC provision even within the limits that bound every jurisdiction and trial evidence is emerging to inform this practice. This chapter is a survey of the challenges and the potential.

Organ Donation after Circulatory Determination of Death in India: A Joint Position Paper.

Organ donation following circulatory determination of death (DCDD) has contributed significantly to the donor pool in several countries. In India, majority of deceased donations happen following brain death (BD). While existing legislation allows for DCDD, there have been only few reports of kidney transplantation following DCDD from India. This document, prepared by a multidisciplinary group of experts, reviews international best practices in DCDD and outlines the path for DCDD in India. Ethical, medical, legal, economic, procedural, and logistic challenges unique to India have been addressed. The practice of withdrawal of life-sustaining treatment (WLST) in India, laid down by the Supreme Court of India, is time-consuming, possible only in patients in a permanent vegetative state, and too cumbersome for day-to-day practice. In patients where continued medical care is futile, the procedure for WLST is described. In controlled DCDD (category-III), decision for WLST is independent of and delinked from the subsequent possibility of organ donation. Families that are inclined toward organ donation are explained the procedure including the timing and location of WLST, consent for antemortem measures, no-touch period, and the possibility of stand-down and return to the intensive care unit (ICU) without donation. In donation following neurologic determination of death (DNDD), if cardiac arrest occurs during the process of BD declaration, the protocol for DCDD category-IV has been described in detail. In DCDD category-V, organ donation may be possible following unsuccessful cardiopulmonary resuscitation of cardiac arrest in the ICU. An outline of organ-specific requisites for kidney, liver, heart, and lung transplantation following DCDD and techniques, such as normothermic regional perfusion (nRP) and ex vivo machine perfusion, has been provided. The outcomes of transplantation following DCDD are comparable to those following DBDD or living donor transplantation. Documents and checklists necessary for successful execution of DCDD in India are described. How to cite this article: Seth AK, Mohanka R, Navin S, Gokhale AGK, Sharma A, Kumar A, et al. Organ Donation after Circulatory Determination of Death in India: A Joint Position Paper. Indian J Crit Care Med 2022;26(4):421-438.

Acute haemorrhagic leukoencephalitis (AHLE) - our experience and a short review.

BACKGROUND: Acute haemorrhagic leukoencephalitis (AHLE), a rare variant of acute disseminated encephalomyelitis (ADEM), often presents differently from classical ADEM, thereby posing a diagnostic challenge to the clinician. AIM: To report AHLE, its clinic-radiological manifestations, process of diagnosis and prognosis. METHOD AND RESULTS: Eight patients presented with altered sensorium, acute focal deficits with or without seizures. Initial workup showed evidence of haemorrhagic lobar or thalamic lesions in seven patients. All patients underwent extensive evaluation for collagen vascular disease and vasculitis profile, autoimmune encephalitis panel and aquaporin-4 antibody, which were found to be normal. Cerebrospinal fluid (CSF) biochemistry and microscopy was non-contributory and CSF viral PCRs, toxoplasma antibodies, cryptococcal antigen were also negative. All patients had progressively worsening sensorium and neurological deficits. Repeat MRIs showed increase in oedema in the lesions and appearance/expansion of haemorrhage in the thalamic/hemispherical lesions. All patients received intravenous methylprednisolone (IVMP) without any benefit. Four patients underwent plasmapheresis (PLEX), one received intravenous immunoglobulin (IVIG) and one received both second line immunotherapies, without significant improvement. Brain biopsy (performed in three patients) showed inflammatory demyelination and areas of haemorrhage, thus confirming the diagnosis. Six patients succumbed in 7-30 days of the illness, despite aggressive treatment and only two survived, albeit with a significant disability. CONCLUSION: AHLE is a rare, yet very severe variant of ADEM. MRI shows lesions with haemorrhages, oedema and mass effect and histology findings reveal inflammatory infiltrates, haemorrhagic foci and fibrinoid necrosis of vessel walls. Prognosis is worse as compared to the classic ADEM, with a high mortality rate. To the best of our knowledge, this is one of the largest series of AHLE to have been reported anywhere in the world. KEYMESSAGE: Acute encephalopathy, multifocal deficits accompanied by haemorrhagic CNS demyelinating lesions with oedema and mass effect are the key features of AHLE. It is a rare, yet very severe form of ADEM with very high morbidity and mortality.

Adjunctive Brivaracetam in Indian Patients with Uncontrolled Focal Epilepsy: Results from a Pooled Analysis of Two Double-Blind, Randomized, Placebo-Controlled Trials.

BACKGROUND: Nearly one-third of patients don't achieve seizure control with existing antiepileptic drugs. Brivaracetam (BRV) is a new member of the racetam class of drug, designed to selectively target SV2A, with binding affinity 15- to 30-fold greater than that of levetiracetam. OBJECTIVE: This pooled analysis reports efficacy and tolerability data of adjunct BRV (50, 100, and 200 mg/day) compared with placebo in Indian patients with uncontrolled focal epilepsy. METHODS: Data of 104 patients (aged 16-80 years) from 2 studies (N01252 and N01358) were pooled for this analysis. The studies comprised an 8-week prospective baseline period, and a 12-week treatment period. The study endpoints included median percent reduction from baseline in focal seizure frequency/28-days, ≥50% responder rate, and seizure freedom (all seizure types). The safety analysis included treatment-emergent adverse events (TEAEs). RESULTS: The efficacy population comprised 101 patients. In the Indian sub-group population, median percent reduction from baseline in focal seizure frequency/28-days was greater in the BRV dose groups: 39.7% (p = 0.00868), 46.8% (p = 0.00180) and 48.2% (p = 0.05224), for BRV 50, 100, 200 mg/day, respectively, compared with 20.6% for placebo. Responder rates (≥50%) were 38.1%, 45.7%, and 45.5% for BRV 50, 100, and 200 mg/day, respectively, compared with 11.7% for placebo. Complete seizure freedom was reported by 4.8% (1/21) and 2.9% (1/35) of patients on BRV50 and 100 mg/day, respectively, and none out of the 11 and 34 patients on BRV200 mg/day and placebo, respectively. In the safety population (n = 104), most commonly reported TEAEs (reported by ≥5% of patients taking brivaracetam) were headache and cough; most TEAEs were mild or moderate in intensity. CONCLUSION: This pooled analysis has provided evidence that adjunct brivaracetam, was effective and well-tolerated in Indian patients with uncontrolled focal epilepsy.

Symptom Management and Supportive Care of Serious COVID-19 Patients and their Families in India.

Coronavirus disease-19 (COVID-19) pandemic is causing a worldwide humanitarian crisis. Old age, comorbid conditions, end-stage organ impairment, and advanced cancer, increase the risk of mortality in serious COVID-19. A subset of serious COVID-19 patients with serious acute respiratory illness may be triaged not to receive aggressive intensive care unit (ICU) treatment and ventilation or may be discontinued from ventilation due to their underlying conditions. Those not eligible for aggressive ICU measures should receive appropriate symptom management. Early warning scores (EWS), oxygen saturation, and respiratory rate, can facilitate categorizing COVID-19 patients as stable, unstable, and end of life. Breathlessness, delirium, respiratory secretions, and pain, are the key symptoms that need to be assessed and palliated. Palliative sedation measures are needed to manage intractable symptoms. Goals of care should be discussed, and advance care plan should be made in patients who are unlikely to benefit from aggressive ICU measures and ventilation. For patients who are already in an ICU, either ventilated or needing ventilation, a futility assessment is made. If there is a consensus on futility, a family meeting is conducted either virtually or face to face depending on the infection risk and infection control protocol. The family should be sensitively communicated about the futility of ICU measures and foregoing life-sustaining treatment. Family meeting outcomes are documented, and consent for foregoing life-sustaining treatment is obtained. Appropriate symptom management enables comfort at the end of life to all serious COVID-19 patients not receiving or not eligible to receive ICU measures and ventilation. How to cite this article: Salins N, Mani RK, Gursahani R, Simha S, Bhatnagar S. Symptom Management and Supportive Care of Serious COVID-19 Patients and their Families in India. Indian J Crit Care Med 2020;24(6):435-444.

DNAR Guidelines from ICMR: Meeting a felt need.

We note with interest Dr Olinda Timms' comments (1) on the Indian Council of Medical Research (ICMR) guidelines for Do-not-Attempt-Resuscitation (DNAR) published recently (2), and thank her for raising some pertinent issues.

Comparing long-term outcomes of epilepsy patients from a single-visit outreach clinic with a conventional epilepsy clinic: A cross-sectional observational study from India.

PURPOSE: To compare long-term treatment outcomes in epilepsy patients from a single-visit outreach clinic on the Lifeline Express (LLE) with a conventional hospital (AIIMS) based epilepsy clinic in India. METHODS: Using a cross-sectional observational study design, consecutive epilepsy patients from fifteen LLE clinics conducted from 2009 to 2014 were compared to epilepsy patients registered in the same duration at the AIIMS epilepsy clinic. The primary outcome was to determine if patients were still taking AEDs. To determine current AED status, patients from the LLE clinic were contacted telephonically. For the AIIMS patients, hospital records were reviewed and phone calls made to those patients who had not followed-up for more than a year. RESULTS: In the 5 years under review, 1923 and 1257 patients had consulted at the LLE and AIIMS clinics respectively. Long-term outcomes were available for analysis in 688 AIIMS and 531 LLE clinic patients. Of the AIIMS patients, 581(87%) were continuing AEDs, 49(7%) had discontinued AEDs after being seizure-free for at least 5 years, 39(6%) had discontinued AEDs without medical advice and 19(2.8%) were dead. Outcomes in 531 LLE patients revealed that 351(72%) continued to be on AEDs, 34(7%) had discontinued AEDs on advice, 106 (22%) had discontinued AEDs without any medical advice and 40 (7.5%) were dead. The treatment gap in the LLE patients was reduced from 49% at first contact to 22% at follow-up 2-8 years later. CONCLUSIONS: Even single-visit epilepsy clinics may be an effective option for reducing treatment gap in limited-resource regions of the world.

End of Life and Palliative Care in Neurology: Does Autonomy Matter?

The recent supreme court of India judgment on autonomy makes it necessary for all practicing neurologists to appraise themselves of the changing legal framework for End-of-Life decision-making in India. A pathway has been prescribed for advance care planning and medical futility decision-making. This is an evolving landscape and in a diverse country may vary substantially by geography. Living wills and advance medical directives can be prepared by our patients, and we will be required to honor these instruments. Catastrophic brain injury and life-limiting neurologic illness both require us to maintain our commitment to care when cure is no longer possible.

Definition of Terms Used in Limitation of Treatment and Providing Palliative Care at the End of Life: The Indian Council of Medical Research Commission Report.

BACKGROUND: Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date. METHODOLOGY: This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research. The consensus statement was created using Nominal Group and Delphi Method. RESULTS: Twenty-five definitions related to the limitations of treatment and providing palliative care at the end of life were created by reviewing existing international documents and suitably modifying it to the Indian sociocultural context by achieving national consensus. Twenty-five terminologies defined within the scope of this document are (1) terminal illness, (2) actively dying, (3) life-sustaining treatment, (4) potentially inappropriate treatment, (5) cardiopulmonary resuscitation (CPR), (6) do not attempt CPR, (7) withholding life-sustaining treatment, (8) withdrawing life-sustaining treatment, (9) euthanasia (10) active shortening of the dying process, (11) physician-assisted suicide, (12) palliative care, (13) EOLC, (14) palliative sedation, (15) double effect, (16) death, (17) best interests, (18) health-care decision-making capacity, (19) shared decision-making, (20) advance directives, (21) surrogates, (22) autonomy, (23) beneficence, (24) nonmaleficence, and (25) justice.