Assessing palliative care practices in intensive care units and interpreting them using the lens of appropriate care concepts. An umbrella review.

PURPOSE: Intensive care units (ICUs) have significant palliative care needs but lack a reliable care framework. This umbrella review addresses them by synthesising palliative care practices provided at end-of-life to critically ill patients and their families before, during, and after ICU admission. METHODS: Seven databases were systematically searched for systematic reviews, and the umbrella review was conducted according to the guidelines laid out by the Joanna Briggs Institute (JBI). RESULTS: Out of 3122 initial records identified, 40 systematic reviews were included in the synthesis. Six key themes were generated that reflect the palliative and end-of-life care practices in the ICUs and their outcomes. Effective communication and accurate prognostications enabled families to make informed decisions, cope with uncertainty, ease distress, and shorten ICU stays. Inter-team discussions and agreement on a plan are essential before discussing care goals. Recording care preferences prevents unnecessary end-of-life treatments. Exceptional end-of-life care should include symptom management, family support, hydration and nutrition optimisation, avoidance of unhelpful treatments, and bereavement support. Evaluating end-of-life care quality is critical and can be accomplished by seeking family feedback or conducting a survey. CONCLUSION: This umbrella review encapsulates current palliative care practices in ICUs, influencing patient and family outcomes and providing insights into developing an appropriate care framework for critically ill patients needing end-of-life care and their families.

"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.

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.

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.

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.

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.

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.

India: not a country to die in.

This commentary addresses the issue of disproportionate medical interventions for end-of-life patients. A complex mix of sociocultural and medical factors, against the backdrop of the legal milieu, has an impact on the quality of death. The barriers to appropriate end-of-life and palliative care in India are multilayered and not easy to dismantle. To raise the level of care for the dying in India, currently rated among the worst in the world, it would require no less than a nationwide movement. This paper attempts to bring into the open the areas of concern for discussion, and proposes appropriate legislation for a realistic solution.