Background: A systematic understanding of socio-economic inequalities in end-of-life (EOL) suffering among advanced cancer patients is required to inform efforts to reduce these inequalities as part of Universal Health Coverage goals.
Aims: To assess inequalities in multiple domains of EOL suffering among advanced cancer patients – physical, functional, psychological, social, and spiritual –, using two socio-economic status (SES) indicators, education and perceived economic status of the household.
Methods: We used cross-sectional data from surveys of stage IV cancer patients (n = 1378) from seven hospitals across five countries (China, Sri Lanka, India, Vietnam and Myanmar). We conducted separate multivariable linear regression models for each EOL suffering domain. We also tested interactions between the two SES indicators and between each SES indicator and patient age.
Results: Patients living in low economic status households /with fewer years of education reported greater suffering in several domains. We also found significant interaction effects between economic status of the household and years of education for all EOL suffering outcomes. Age significantly moderated the association between economic status of the household and social suffering and between years of education and psychological, social, and spiritual suffering (p < 0.05 for all).
Conclusion: Results highlight that SES inequalities in EOL suffering vary depending on the suffering domain, the SES indicator assessed, and by patient age. Greater palliative care resources for patients with low SES may help reduce these inequalities.
The Indian Society for Study of Pain (ISSP), Cancer Pain Special Interest Group guidelines on palliative care aspects in cancer pain in adults provide a structured, stepwise approach which will help to improve the management of cancer pain and to provide the patients with a minimally acceptable quality of life. The guidelines have been developed based on the available literature and evidence, to suit the needs, patient population, and situations in India. A questionnaire based on the key elements of each sub draft addressing certain inconclusive areas where evidence was lacking was made available on the ISSP website and circulated by E-mail to all the ISSP and Indian Association of Palliative Care (IAPC) members. In a cancer care setting, approaches toward managing pain vary between ambulatory setting, home care setting, acute inpatient setting, and end-of-life care in hospice setting. We aim to expound the cancer pain management approaches in these settings. In an ambulatory palliative care setting, the WHO analgesic step ladder is used for cancer pain management. The patients with cancer pain require admission for acute inpatient palliative care unit for poorly controlled pain in ambulatory and home care settings, rapid opioid titration, titration of difficult drugs such as methadone, acute pain crisis, pain neuromodulation, and pain interventions. In a palliative home care setting, the cancer pain is usually assessed and managed by nurses and primary physicians with a limited input from the specialist physicians. In patients with cancer at the end of life, the pain should be assessed at least once a day. Moreover, physicians should be trained in assessing patients with pain who are unable to verbalize or have cognitive impairment.
Mentors at seven United States and Australian academic institutions partnered with seven leading Indian academic palliative care and cancer centers to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement. From its inception in 2017 to 2020, the Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai training hub in 2019 with philanthropic support, Quality Improvement Hub (e.g., QI-Hub) India. In 2020 the project which now focuses on both palliative care and cancer teams as EQuIP-India. EQuIP now leads ongoing Indian national collaboratives and training in quality improvement and is integrated into India's National Cancer Grid. PC-PAICE demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer quality improvement. It is one of several networked, blended learning approaches with potential for rapid scaling of evidence-based practices.
Introduction: End-of-life care (EOLC) is an increasingly important concern in the management of terminally ill patients. Effective EOLC depends significantly on the physicians working in the critical care units. Thus, adequate knowledge of critical care professionals regarding EOLC is important. We conducted this study to evaluate the awareness and knowledge of doctors working in critical care units toward EOLC.
Materials and methods: Doctors working in critical care units were invited to fill paper-based questionnaire. The validated questionnaire was constructed based on the existing literature on EOLC and expert opinion. The questionnaire comprised four sections: demographic details, experience with EOLC situations, general awareness of EOLC, and specific awareness of EOLC in clinical practice. The collected data were analyzed by descriptive analysis.
Results: Most respondents had not counseled more than five families regarding EOLC over 1 month. Majority of the respondents (81.7%) had heard of EOLC; the major source of information being their work in the concerned specialty. Only 29.2% of the respondents applied EOLC principles in their clinical practice. Main barriers were lack of information and training. Only 20.3% of the respondents were aware of Indian guidelines about EOLC. Majority of the respondents disagree regarding the usage of critical care units and resuscitation of terminally ill patients and were in favor of home care. One-third respondents felt uncomfortable in discussing EOLC issues with the families. Half of the respondents felt that they were only somewhat competent in managing EOLC issues. Most respondents opined that training and education in medical curriculum for terminally ill patients are lacking and were in strong favor of inclusion of specific training for the same.
Conclusion: The EOLC needs to be an integral part of critical care management and teaching curriculum. An integral referral system may also be an option for various advance disease patients getting treatment from critical care specialists for EOLC decision.
Introduction: Early integration of palliative interventions in patients with central airway obstruction (CAO) has shown to reduce patients' distress due to breathlessness and achieve better outcomes at lower cost. This retrospective review was performed to determine whether rigid bronchoscopic interventions alleviated the symptom burden and the requirement for continued mechanical ventilation in patients with CAO in a tertiary care hospital.
Materials and Methods: Detailed records of 105 patients with CAO were retrospectively studied. The Numerical Rating Scale (NRS) score for cough and dyspnea before and after the intervention was noted. A need for an escalation or reduction in level of care was also noted.
Results: The mean NRS score for dyspnea (n = 84) reduced from 7.5 (4-9) (before procedure) to 2.5 (2-6) after intervention (P < 0.01). The mean NRS score for cough (n = 68) also reduced from 6.5 (4-8) (before procedure) to 4 (3-7) after intervention (P < 0.01). Of these patients, bronchoscopic intervention allowed transfer out of the ICU in 14 patients (42%) and immediate withdrawal of mechanical ventilation in 8 patients (42%).
Conclusion: There is an instantaneous valuable palliation of symptoms and improved health-care utilization with airway tumor debulking and stenting. Multidisciplinary interventions with emphasis delivery of palliative care provide better care of patients with CAO.
Background: Medical discipline in India focuses on cure rather than comfort care. Palliative care is concerned with improving quality of life and relieving sufferings in patients with advanced incurable terminal diseases. Palliative care in India is still in infancy stage due to lack of knowledge, attitude and skills among health care providers. The reason being lack of training in under graduate as well as postgraduate teaching curriculum and lack of sensitization among policy makers.
Aims and Objectives: To assess the awareness, interest, practices and knowledge in palliative care among medical professionals working in a tertiary care hospital.
Materials and Methods: All participants were mailed proforma to be filled in a fixed format including details of their qualification, demographic data, their field of work, their training in palliative care and multiple choice questions regarding awareness interest, practices and knowledge of palliative care.
Results: Out of 186 respondents, 56% had not received any basic training in palliative care. 81% wanted palliative care education to be included in undergraduate curriculum. Poor program was identified as the most common barrier in learning palliative care. 77% respondents had no idea about home based palliative care services. 50.8% patients dies in hospital in their terminal stage. 88% were interested in learning safe opioid practices. Although 89.8% were aware of the need of palliative care in metastatic cancer but less than 50% were aware of the fact that palliative care is also required in MDR-TB and mental illness.
Conclusion: This study reflects data of an apex cancer institute of the country. The result of awareness is not very encouraging despite a dedicated palliative care department. So, we can assume what will be the palliative care status in other parts of India where there is no palliative care at all.
Recommendation: We strongly recommends that palliative care teaching should be incorporated in undergraduate curriculum to sensitize the students from the beginning. Budding residents in their learning phase can play an important role by learning and providing palliative care as the first person to come into contact with the patients are residents. There is a strong need of spreading palliative care awareness all over the country.
Head-and-neck cancers (HNCs) are significant in India. Poverty, illiteracy, lack of access to healthcare, and poor treatment infrastructure pose a major challenge in the management of these cancers. The majority of these patients present with advanced stage and are not amenable to curative treatment. The majority have the potential to benefit from palliative care (PC) interventions. Our experience has been that usually the referrals from HNC clinic for PC are at the end-of-life or terminal stage. Unfortunately, in the state of intractable suffering, it is difficult for patients to understand and fully benefit from the role of PC. Developing an effective working relationship and communication between the PC service and referring surgeons or oncologists is a key to foster more timely, appropriate referral, as both patients and clinicians often misunderstand or fail to recognize the role of PC. In preparation for a quality improvement project to improve access to PC for HNC patients at the All India Institute of Medical Sciences, we reviewed the needs, challenges, conceptual models, and potential of early integration of PC in advanced HNC patients.
Introduction: There is enough evidence to suggest that early introduction to palliative care (PC) for patients with advanced cancer is beneficial. However, despite this, the patients often come late to PC physicians. There are a number of studies examining the preferences and practices of the physicians with respect to PC. However, there is limited literature exploring the patients' preferences and awareness regarding the PC services. This audit was done to identify the understanding and perceptions of PC in patients visiting PC outpatient department (OPD) and identify strategies to enhance their understanding.
Materials and Methods: This prospective cross-sectional study was conducted in 200 advanced cancer patients visiting PC OPD in a tertiary care hospital. The patients were asked to fill a questionnaire to assess their knowledge and expectations form PC on their first visit.
Results: Majority of the patients were from nearby areas and around 20% of them had to travel more than 300 km to receive palliative consultation. Unfortunately, majority of the patients had not heard the term PC before and were not aware of its meaning. Most of them (90%) were send to control pain which was too severe to be managed by the oncologists. We think that the major reason for the lack of awareness about PC services is limited availability across the country and lack of coordinated approach.
Conclusions: The main problem identified in the audit was the inadequate information, lack of PC setups, and late referral of the patients to PC. Hence, we should make a model where PC services are integrated with the curative services and offered throughout the illness after cancer diagnosis.
BACKGROUND: Whether online resources can facilitate spread of palliative care knowledge and skills in India is an urgent question given few providers and a large, ageing population.
OBJECTIVES: We surveyed needs and feasibility regarding e-learning.
METHODS: Indian, Australian and North American palliative care experts developed an electronic survey using Qualtrics, emailed to all registrants of the 2017 Indian Association of Palliative Care (IAPC) conference and distributed during the conference.
RESULTS: Of 60 respondents (66% men, 60% doctors), most worked in hospitals and had oncology backgrounds, and 35% were from Kerala and Tamil Nadu. Most (90.9%) received palliative care training in India or overseas with 41% trained in a Trivandrum Institute of Palliative Sciences residential course (4-6 weeks). 17% completed the IAPC essential certificate and 22% had undertaken various distance learning courses. Interest in online training was substantial for most aspects of palliative care.
CONCLUSION: There was a high level of interest and reported feasibility in taking a case-based online course. This pilot survey provides support for online case-based education in India, particularly among physicians.
The patients often present to palliative care with intractable nausea and vomiting. This may reduce the effectiveness of oral drugs and significantly affects the quality of life of these patients. Despite multiple drugs available for treatment, it is often difficult to control the symptoms. Olanzapine is an atypical antipsychotic and acts on multiple receptors and may help in treating vomiting in a patient with advanced malignancy. We report a case of gallbladder carcinoma who presented to us with intractable vomiting which was not relieved with a combination of traditional antiemetics but showed marked improvement with olanzapine.
Background: Pain medicine is a developing specialty, aimed at relieving pain and suffering, enhancing function, and improving the quality of life of patients. Pain is often ignored, under-reported and mismanaged by health-care providers. Aspiring pain physicians in India face many challenges and barriers in advancing their specialty.
Objectives: The objective of this study is to determine the challenges in establishing a pain practice in India and to discuss the opportunities and strategies to overcome these barriers.
Subjects and Methods: Face-to-face interactive sessions were held with 60 aspiring pain physicians of India who were chosen as registrants to an International Association for the Study of Pain-Indian Society for Study of Pain multidisciplinary evidence-based pain management program conducted at Delhi and Mumbai. The available opportunities, practical issues and the hurdles in becoming a pain specialist were analyzed and summarized in this commentary.
Results: The major barriers identified were: (1) Inadequate knowledge and absence of structured, educational and training courses, (2) bureaucratic hurdles, and (3) concerns of opioid misuse and addiction. The opportunities for personal growth and that of the specialty that could be utilized include the creation of a pain resource team, increasing community awareness, changing attitudes of other physicians toward pain specialty, and research and evidence building of the effectiveness of pain management strategies.
Conclusion: India needs a structured teaching and training program in the area of pain medicine that is affiliated by the Medical Council of India or other reputed boards of medical education and certification. There is an urgent need to include pain management in the undergraduate and postgraduate medical curriculum. Enhancing community level awareness by public health education campaigns, developing networks of pain physicians, and appropriate marketing of the specialty is needed to make pain medicine recognized and utilized as a valuable specialty.
Oral cancers are one of the most common cancers in India. These patients have pain during the course of the disease. Various drugs including opioid and nonsteroidal anti-inflammatory drug have been used to manage pain. However, these are associated with side effects such as constipation and vomiting. An early interventional block may decrease the requirement for analgesics and improve the overall quality of life. We describe a case of oral carcinoma successfully managed with ultrasound-guided pterygopalatine block.
Background: Palliative medicine is an upcoming new specialty aimed at relieving suffering, improving quality of life and comfort care. There are many challenges and barriers in providing palliative care to our patients. The major challenge is lack of knowledge, attitude and skills among health-care providers.
Objectives: Evaluate the effectiveness of the certificate course in essentials of palliative care (CCEPC) program on the knowledge in palliative care among the participants.
Subjects and Methods: All participants (n= 29) of the CCEPC at All India Institute of Medical Sciences, Delhi, giving consent for pretest and posttest were recruited in the study. This educational lecture of 15 h was presented to all the participants following pretest and participants were given same set of questionnaire to be filled as postintervention test.
Results: In pretest, 7/29 (24.1%) had good knowledge which improved to 24/29 (82.8%) after the program. In pretest, 62.1% had average knowledge and only 13.8% had poor knowledge. There was also improvement in communication skills, symptom management, breaking bad news, and pain assessment after completion of the program.
Conclusion: The CCEPC is an effective program and improving the knowledge level about palliative care among the participants. The participants should implement this knowledge and the skills in their day-to-day practice to improve the quality of life of patients.
INTRODUCTION: Given the particularity of spirituality in the Indian context, models and tools for spiritual care that have been developed in Western countries may not be applicable to Indian palliative care patients. Therefore, we intended to describe the most common signs of spiritual distress in Indian palliative care patients, assess differences between male and female participants, and formulate contextually appropriate recommendations for spiritual care based on this data.
METHODS: Data from 300 adult cancer patients who had completed a questionnaire with 36 spirituality items were analyzed. We calculated frequencies and percentages, and we compared responses of male and female participants using Chi-squared tests.
RESULTS: Most participants believed in God or a higher power who somehow supports them. Signs of potential spiritual distress were evident in the participants' strong agreement with existential explanations of suffering that directly or indirectly put the blame for the illness on the patient, the persistence of the "Why me?" question, and feelings of unfairness and anger. Women were more likely to consider illness their fate, be worried about the future of their children or spouse and be angry about what was happening to them. They were less likely than men to blame themselves for their illness. The observations on spirituality enabled us to formulate recommendations for spiritual history taking in Indian palliative care.
CONCLUSION: Our recommendations may help clinicians to provide appropriate spiritual care based on the latest evidence on spirituality in Indian palliative care. Unfortunately, this evidence is limited and more research is required.
Nonmalignant respiratory diseases are chronic and life-limiting conditions that need holistic palliative care. Such patients not only have a variety of physical symptoms such as dyspnea, pain, cough, depression, and anxiety, but also have a number of psychosocial and spiritual issues, which are not addressed to by us. This leads to a poor quality of life. Hence, these patients require supportive palliative care to relieve their sufferings, but unfortunately such care is not available to them in our country. In this article, we have tried to discuss the barriers to the provision of palliative care to such patients and suggested some measures to overcome them.
Les patients souffrant de cancer du poumon subissent de nombreux symptômes allant de la douleur, de la toux et des difficultés respiratoires à des problèmes psychosociaux divers. Une étude menée en Inde dans un centre de soins tertiaires en oncologie a permis d'analyser la charge de symptômes et la gestion de cent patients atteints d'un cancer du poumon. Entre le moment de l'admission et celui de la sortie du patient, des améliorations significatives ont été observées sur la douleur, les difficultés respiratoires ou la toux, de même que sur l'indice fonctionnel, après divers traitements pharmaceutiques ou après des interventions non pharmaceutiques. Les soins palliatifs ont un rôle majeur à jouer à chaque étape de la gestion d'un cancer. Des interventions précoces permettent non seulement d'améliorer le bien-être physique et psychologique des patients, mais contribuent également à leur permettre d'accepter leur diagnostic et leur pronostic.
[D'après résumé revue]
A travers cet article, les auteurs partagent leur expérience de l'évaluation et de la prise en charge de la dyspnée chez le patient cancéreux en Inde après avoir donné à voir un bref rappel de sa physiopathologie et de ses causes.
Un pronostic exact permet aux patients de faire des projets, de mettre leurs affaires en ordre et de décider de la manière dont ils veulent passer le temps qu'il leur reste à vivre. Un bon pronostic aide aussi les médecins à décider des traitements à venir et de prévenir ou d'éviter une thérapie médicale invasive ou inefficace. Les auteurs montrent que les médecins ont besoin de règles objectives qui les aideront à faire de meilleur jugement et en proposent quelques-unes.