Response to COVID-19 Crisis with Facilitated Community Partnership among a Vulnerable Population in Kerala, India - A Short Report.

The unexpected lockdown announced by the Government of India in March 2020 in response to the pandemic left the coastal community in Kerala deprived of not only essential amenities but also healthcare. Some poverty-ridden, over-crowded coastal regions had been declared as critical containment zones with severe restriction of movement, adding to their vulnerability. People with serious health-related suffering (SHS) in this community required urgent relief. A group of educated youth in the community joined hands with a non-governmental organisation specialised in palliative care (PC) services and strived to find the best possible solutions to address the healthcare needs in their community. This paper reports the collaborative activities done during the pandemic in the coastal region and compares the activities with steps proposed by the WHO to develop community-based PC (CBPC). By engaging, empowering, educating, and coordinating a volunteer network and providing the required medical and nursing support, the programme was able to provide needed services to improve the quality of life of 209 patients and their families who would have been left with next-to-no healthcare during the pandemic. We conclude that even in the context of much poverty, delivery of CBPC with the engagement of compassionate people in the community can successfully reduce SHS.

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.

Efficacy of 2% lignocaine medicated pad for pain alleviation during rabies immunoglobulin administration: A randomized controlled trial.

BACKGROUND: Rabies immunoglobulin (RIG) for animal bite victims is usually administered around the wound without the use of any anesthetic. Theoretically, the topical use of 2% lignocaine can reduce the pain during the procedure. OBJECTIVES: This study aimed to determine the efficacy of 2% lignocaine medicated pad (LMP) for reducing pain during administration of RIG. METHODS: A randomized triple-blind controlled trial was done in a tertiary care setting in Kerala, India. The proximal and distal wounds of the patient with minimum two, Category III animal bite wounds were randomized to intervention and placebo arms, based on a previously generated random number sequence. Sterile gauze pads soaked with 2% lignocaine and normal saline were the intervention and placebo, respectively. Pain was the primary outcome measure and was assessed using numeric rating scale (NRS) and sound, eye, and motor pain (SEM) scale. The patient, outcome assessor, and statistician were blinded. RESULTS: The wound sites and size of 100 intervention and 100 control wounds were comparable. The score of all elements of the SEM, total SEM, and NRS score were significantly lower in the wounds, which were given LMP compared to the control wounds. The number needed to treat for satisfactory pain relief and immediate pain relief was 25 and 14, respectively. No serious or minor adverse events were reported in the trial. CONCLUSIONS: The use of a proven drug in a topical route optimizes pain reduction from iatrogenic cause for millions of animal bite victims around the world with very little additional financial burden.

Improving Access and Quality of Palliative Care in Kerala: A Cross-sectional Study of Providers in Routine Practice.

BACKGROUND: Expanding access and improving quality of palliative care in low-middle income countries is a pressing priority. OBJECTIVE: The objective of the study was to describe structure and processes of care across government (GO) and non-GO (NGO) palliative care providers (PCPs) in Kerala, India. DESIGN: This was a cross-sectional telephone survey. SETTING/SUBJECTS: This study consisted of 200 randomly selected PCPs across Kerala. The survey explored organizational structure, patient assessment, opioid availability, and explored elements considered essential to palliative care delivery in the Indian context. RESULTS: One hundred GO and 100 NGO PCPs agreed to participate (100% response rate). The annual median number of new patients was 183 and 159 in GO and NGO PCPs, respectively. The median number of annual home visits in GO PCPs was 1398 and in NGO PCPs was 979. Median number of outpatient visits in GO PCPs was 600 and in NGO PCPs was 520. Only 24% (47/200) of the PCPs had full-time physicians with training in palliative care; 60% of GO PCPs had no full time physician with training in palliative care. Patient-reported pain was routinely documented by 21% (21/100) and 65% (65/100) of the GO and NGO sites, respectively (P < 0.001). None of the GO and only 36% (36/100) of NGO PCPs were able to prescribe oral morphine. Psychosocial and spiritual issues were documented routinely in only 4% (4/100) and 48% (47/99) of the GO and NGO PCPs, respectively (P < 0.001). CONCLUSIONS: Caution is needed against potential challenges to quality care in any new initiative. Kerala has achieved remarkable success in the coverage of palliative care through hundreds of locally active NGOs through GO machinery involving every primary health center. Yet, there are gaps such as absence of full-time physicians. This study highlights the need for periodic review to identify gaps in care.

Responding to Palliative Care Training Needs in the Coronavirus Disease 2019 Era: The Context and Process of Developing and Disseminating Training Resources and Guidance for Low- and Middle-Income Countries from Kerala, South India.

BACKGROUND: Palliative care has an important role to play in the global coronavirus disease 2019 (COVID-19) pandemic. It is integrated and is a key component in the governmental and community structures and services in Kerala, in India. Palliative care in the state has grown to be a viable model recognized in global palliative care and public health scene. The community network of palliative care, especially the volunteers linking with clinical teams, is a strong force for advocacy, relief support including provision of emergency medications, and clinical care. OBJECTIVE: To develop a palliative care resource tool kit for holistic care of patients affected with COVID-19 and to support the health-care workers looking after them to enable palliative care integration with COVID-I9 management. METHODS: The Kerala State government included senior palliative care advisors in the COVID-19 task force and 22 palliative care professionals formed a virtual task force named Palli COVID Kerala as an immediate response to develop recommendations. Results: Developed a palliative care in COVID-19 resource toolkit which includes an e-book with palliative care recommendations, online training opportunities, short webinars and voice over power point presentations. CONCLUSION: Integrated Palliative care should be an essential part of any response to a humanitarian crisis. The e resource tool kit can be adapted for use in other low- and middle-income countries.

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.

Methadone is Now Available in India: Is the Long Battle Over?

CONTEXT: Morphine and fentanyl had so far been the only available opioids in India in step three of the World Health Organization analgesic ladder. Especially for those not tolerating morphine and particularly for those developing neurotoxicity, an inexpensive alternative was essential. Many years of advocacy by palliative care activists have resulted in methadone being now available for sale in India for pain management. However, the characteristic pharmacokinetics and pharmacodynamics of methadone raise potential issues of safety. AIMS: This study aimed to recommend the essential steps for ensuring availability of methadone for improved pain relief in India, while at the same time ensuring safe use. CONCLUSIONS: Two steps are suggested. Firstly, the palliative care community in India must launch an educational program on methadone freely available to all potential prescribers of this medicine. Secondly, we must advocate with drug controllers of states and union territories for making methadone available only through recognized medical institutions and for ensuring that indiscriminate sale through pharmacies is avoided.

Sexual Functioning in Men Living with a Spinal Cord Injury-A Narrative Literature Review.

BACKGROUND: Sexual dysfunction is a major concern for Indian men living with a spinal cord injury. OBJECTIVES: To examine the literature related to sexuality traumatic cord injury and its impact on sexual functioning. MATERIALS AND METHODS: Databases using Cumulative Index to Nursing and Allied Health Literature (CINAHL) 2000-2012, Medline 1989-2012, Applied Social Sciences Index and Abstracts (ASSIA) 1989-2012 and Google Scholar were the search engines used used for literature review. RESULTS: The search yielded a total of 457 articles and only 75 of them were found relevant. The minimum number of articles required to meet the inclusion criteria for this review was 25-30 articles. Out of the 75 articles, 33 were considered relevant or related to the topic of sexual functioning, spinal cord injury, and paraplegia. Six areas were identified: Sexual stigmatization, physiological barriers to sexual satisfaction, clinical aspects of sexual functioning, biomedical approaches to sexual dysfunction, partner satisfaction, and lack of accessibility to sexual education. CONCLUSION: Spinal cord injury and sexual functioning affects a large segment of the male Indian population, yet most current research focuses on quantitative measurement with the emphasis on ejaculatory dysfunction, orgasm impairment, incontinence, and other physiological dysfunction. Further research is needed to address the subjective accounts of patients themselves with respect to the emotional and social impact of sexual disability. This would help to identify the best possible outcomes for both treatment and rehabilitation.

Palliative care needs of stroke patients at a tertiary care center in South India.

Objectives: Stroke survivors have palliative care needs in multiple domains, which are overlooked. Accurate estimation of these is pivotal in ensuring proper rehabilitation and planning interventions to improve quality of life (QoL). We aimed to assess the palliative care needs of stroke patients in various domains in a structured manner at the neurology service of a tertiary care center in South India. Materials and Methods: Seventy-five consecutive stroke patients presenting to the neurology service were recruited over six months with assessment across various domains including symptom burden, physical domain, activities of daily living (ADL), psychiatric/psychological domain, and QoL at baseline and with follow-up at one month and three months. Results: Despite improvement in the conventional stroke impairment measures among stroke survivors, there were significant unmet needs across various domains; 98% were severely or entirely dependent on ADL at three-month follow-up; and pain and insomnia were the most frequent (33% incidence) troubling symptoms encountered. There were substantial mental health related issues. The QoL measurement tools employed were the stroke impact assessment questionnaire (SIAQ), a novel tool and the World Health Organization Quality Of Life Brief Version (WHO-QOL-BREF). SIAQ scores at one month showed that 19 patients (42.22%) had their QoL severely affected, and 36 patients (80%) showed the same trend at the three-month follow-up. WHO-BREF scores showed that 27 (62%) did not report good QoL, and 32 (73%) were found not to be satisfied with their health at a one-month follow-up. Conclusion: There is a significant burden of unmet palliative care needs among stroke survivors in India across various domains.

Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

Psychosocial and spiritual problems of terminally ill patients in Kerala, India.

AIM: To investigate psychosocial and spiritual problems of terminally ill patients in Kerala, India. MATERIALS & METHODS: Semi-structured qualitative interviews of terminally ill patients were carried out at the Trivandrum Institute of Palliative Sciences Palliative Care Clinic in Trivandrum, Kerala, India and in patients' homes in the surrounding area. RESULTS: Interviews with 37 terminally ill patients in Kerala showed several problems regarding their emotional state, faith, knowledge about the disease, family life and the major impact of financial issues. CONCLUSION: This study shows that more effort should be focused on the reduction of the problems terminally ill patients have to face. While many of these problems are a result of financial troubles and could be eliminated if sufficient funds were available, others are a consequence of tradition and culture. Solutions for the improvement of patients' situations in accord with tradition and culture have to be found.

Palliative Care in India: Past, Present, and Future.

Over the last 4 decades, palliative care in India had steady growth and development from the early hospice movement in the 1980s to specialist and subspecialist palliative medicine in the 2020s. In the first decade, sustainable service delivery by capacity building, novel contextual community networking models, education facilitated by international collaboration, efforts towards opioid access, and nationwide networking through the formation of an association kindled the grand beginning of palliative care in India. Over the next 2 decades, palliative care in India evolved and developed as a speciality, disseminated across the nation, found its place in all clinical settings, engaged with specialities and subspecialities, developed its own specialist training program, and focused on indigenous research enabled through its own journal. Furthermore, end-of-life care awareness, training, advocacy, and initiatives towards policy and legislation reaped huge dividends in terms of improving the quality of dying in India. Generalist training through short and intermediate courses enhanced the knowledge and interest of the primary health care providers and non-palliative care specialists and education through international collaboration both in-person and distance learning modes augmented these efforts. In 2019, most elements of palliative care are part of the undergraduate medical curriculum. Policy initiatives by state and central governments and the inclusion of palliative care in the National Health Policy of 2017 offer hope for the future. In the last decade, we think that palliative care has found its footing and is ready to emerge as one of the dominant clinical specialities. Moreover, it is time for it to broaden its horizon, scope, and realm by developing into subspecialist verticals, being ubiquitous in all clinical spaces, focusing on robust evidence-based approach and research grounded in the Indian practice context.

No Family Should Suffer From Cervical Cancer Twice-The Palliative Care Role in HPV Prevention.

BACKGROUND: Cervical cancer, caused by human papillomavirus infection, is the source of significant personal and societal burden, and robs more than one hundred thousand Indian women and their families of the chances of a healthy and productive life each year. As outlined by the World Health Organization, the three-pronged approach of screening, vaccination, and reduction in mortality by early treatment presents the possibility of the elimination of cervical cancer as a public health problem in the next decade.1 Unfortunately, these approaches are all associated with significant barriers in India. OBJECTIVES: Given that the main mandate of palliative care practitioners to prevent and relieve suffering, here we make the case for these practitioners to offer education around vaccination and screening to female relatives of women encountered with cervical cancer. CONCLUSION: Offering prevention strategies for human papillomavirus aligns with the idea of preventing suffering and is within the scope of palliative care clinicians.

Situational analysis of the quality of palliative care services across India: a cross-sectional survey.

Objective: Palliative care services in India were established in the 1980s but there is no detailed up-to-date knowledge about the quality-of-service provision nationally. We aim to describe the current quality of palliative care provision in India, as measured against nationally adopted standards. Method: A digital survey adapted from the Indian Association of Palliative Care Standards Audit Tool was administered to 250 palliative care centres. Results: Two hundred and twenty-three (89%) palliative care centres participated - 26.4% were government-run, while the rest include non-governmental organisations, private hospitals, community-led initiatives and hospices. About 200 centres 'often' or 'always' fulfilled 16/21 desirable criteria; however, only 2/15 essential criteria were 'often' or 'always' fulfilled. Only 5.8% provide uninterrupted access to oral morphine. Significance of the results: Palliative care centres in India are falling short of meeting the essential quality standards, indicating the urgent need for new initiatives to drive national change.

Optimizing the Global Nursing Workforce to Ensure Universal Palliative Care Access and Alleviate Serious Health-Related Suffering Worldwide.

CONTEXT: Palliative care access is fundamental to the highest attainable standard of health and a core component of universal health coverage. Forging universal palliative care access is insurmountable without strategically optimizing the nursing workforce and integrating palliative nursing into health systems at all levels. The COVID-19 pandemic has underscored both the critical need for accessible palliative care to alleviate serious health-related suffering and the key role of nurses to achieve this goal. OBJECTIVES: 1) Summarize palliative nursing contributions to the expansion of palliative care access; 2) identify emerging nursing roles in alignment with global palliative care recommendations and policy agendas; 3) promote nursing leadership development to enhance universal access to palliative care services. METHODS: Empirical and policy literature review; best practice models; recommendations to optimize the palliative nursing workforce. RESULTS: Nurses working across settings provide a considerable untapped resource that can be leveraged to advance palliative care access and palliative care program development. Best practice models demonstrate promising approaches and outcomes related to education and training, policy and advocacy, and academic-practice partnerships. CONCLUSION: An estimated 28 million nurses account for 59% of the international healthcare workforce and deliver up to 90% of primary health services. It has been well-documented that nurses are often the first or only healthcare provider available in many parts of the world. Strategic investments in international and interdisciplinary collaboration, as well as policy changes and the safe expansion of high-quality nursing care, can optimize the efforts of the global nursing workforce to mitigate serious health-related suffering.