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.

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.

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.

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.

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.

Health-Related Suffering and Palliative Care in Breast Cancer.

Purpose of Review: Breast cancer continues to be the most frequently diagnosed cancer in women and the leading cause of cancer death worldwide. By the suffering that it causes in various domains of life, breast cancer seriously impacts the quality of life of affected individuals and causes a major burden of suffering in the community. The objectives of the review were to understand the health-related suffering in patients with breast cancer and to identify the scope of palliative care in improving the quality of life of patients with breast cancer. Recent Findings: Breast cancer causes suffering in physical, psychological, social, financial, and spiritual domains of the lives of the patient and family. Management of breast cancer with surgery, chemotherapy, and radiation could have adverse effects, such as pain, nausea and vomiting, fatigue, shortness of breath, depression, and constipation. Both cancer and its treatment can impact the psychosocial and spiritual well-being of the patient and family members. Integrating palliative care into existing breast cancer treatment programs seems to be the best approach to diminish these sufferings. Summary: In addition to pain and other physical symptoms, breast cancer can cause major psychological, social, and spiritual suffering. In the context of developing countries, out-of-pocket expenditure can cause major financial destruction which can impact generations. Integration of palliative care to breast cancer treatment is essential.

Serious health-related suffering and palliative care in South Asian countries.

PURPOSE OF REVIEW: South Asia, with a population of 1.79 billion, has close to 9.9 million individuals experiencing serious health-related suffering (SHS). South Asia accounts for 10.23% of the world's cancer incidence. The prevalence of cancer mortality in the region is 68.44%, significantly higher than the world average of 59.74%. This poor outcome highlights the need to focus on SHS in the region. This review was undertaken to assess the current status of palliative care inequities in the region and to guide future action. RECENT FINDINGS: Using morphine-equivalent doses of opioid analgesics (excluding methadone) per cancer death as a proxy measure for access to palliative care, the International Narcotics Control Board data in 2020 show poor access to palliative care. Less than 4% of those in need are able to access palliative care in India, whereas in Afghanistan only 0.2% have access. Inappropriate end-of-life care (EOLC) and catastrophic out-of-pocket health expenditure compound the problem. SUMMARY: The solutions involve the introduction of national programs for palliative care, demonstration of culturally appropriate best practices as proof of concept, favourable legislation for medical opioid access, community participation, engagement of civil society to improve awareness, inclusion of palliative and adding EOLC to medical education and need-based research. VIDEO ABSTRACT: http://links.lww.com/COSPC/A30.

Cervical Cancer-Associated Suffering: Estimating the Palliative Care Needs of a Highly Vulnerable Population.

PURPOSE: To enable design of optimum palliative care for women with cervical cancer, we studied the most common types of suffering and their severity, prevalence, and duration. METHODS: We first reviewed the literature on the major types, severity, prevalence, and duration of suffering associated with cervical cancer. We then conducted a modified Delphi process with experts in cervical cancer care to supplement the literature. For each type of suffering, we distinguished between decedents (those who die from cervical cancer in a given year) and nondecedents (those who have cervical cancer in a given year but do not die). By applying the suffering prevalence and duration estimates to the number of decedents, nondecedents, and family caregivers in 2017, we were able to estimate their palliative care needs and the intensity of palliative care needed to respond adequately to this suffering. RESULTS: There is a high prevalence among decedents of moderate or severe pain (84%), vaginal discharge (66%), vaginal bleeding (61%), and loss of faith (31%). Among both decedents and nondecedents, there is a high prevalence of clinically significant anxiety (63% and 50%, respectively), depressed mood (52% and 38%, respectively), and sexual dysfunction (87% and 83%, respectively). Moderate or severe financial distress is prevalent among decedents, nondecedents, and family caregivers (84%, 74%, and 66%, respectively). More than 40% of decedents and nondecedents are abandoned by their intimate partners. Most patients experience some combination of moderate or severe physical, psychological, social, and spiritual suffering. In total, 258,649 decedents and 2,558,857 nondecedents needed palliative care in 2017, approximately 85% of whom were in low- and middle-income countries where palliative care is rarely accessible. CONCLUSION: Among women with advanced cervical cancer, suffering is highly prevalent and often severe and multifaceted.

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.

To comfort always: Are we ignoring this duty in Covid protocols?

COVID-19 is an amplifier of serious physical suffering and emotional trauma, which together could be all-consuming. It is important for health systems to go beyond methods of prevention and treatment, and focus on the palliation of suffering, and to systematically integrate palliative care into Covid-19 management.

Further, in cases where the triage process indicates poor chances of survival, it is particularly important to respect autonomy by honest and sensitive disclosure of prognosis, and to jointly arrive at goals of care. Hooking every dying person to a ventilator would violate the ethical principles of beneficence and non-maleficence. It is also important to ensure at least electronic communication between the patient and family members.

Keywords: Covid-19, palliative care, end of life care, isolation, quarantine, intensive care, ethics of intubation, consent

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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.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.