{"title":"Protecting Incapacitated Patients’ Rights and Best Interests","authors":"Ercan Avci","doi":"10.25259/ijpc_173_2022","DOIUrl":"https://doi.org/10.25259/ijpc_173_2022","url":null,"abstract":"Contemporary medical ethics requires providing healthcare services in accordance with the patient’s values, preferences and interests based on the rights to self-determination and privacy. Incapacitated patients utilise these rights through substitute decision-makers in light of the substituted judgement and best interest standards. In this context, the article aims to briefly study informed consent and focus on protecting incapacitated patients’ rights and best interests. The article underscores the importance of promoting the autonomy of every patient as much as possible. However, in the case of the lack of decisional capacity and advance directives, surrogates should decide for incapacitated patients based on patients’ known/documented/expressed wishes/ preferences and best interests. Nevertheless, due to the high possibility of the misinterpretation of patients’ values, preferences and interests by surrogates as well as potential financial and social conflicts between patients and their surrogates, in the event of medical procedures with serious consequences, such as life-sustaining support, surrogates should be requested to provide convincing evidence proving that their decisions are in line with the patient’s values, preferences and interests.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"4 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135820105","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Essential Elements of Home-based Palliative Care Model: A Rapid Review","authors":"Mousami Kirtania, Ajitha Katta","doi":"10.25259/ijpc_227_2022","DOIUrl":"https://doi.org/10.25259/ijpc_227_2022","url":null,"abstract":"The need for palliative care is increasing due to the rising burden of non-communicable diseases and some communicable diseases. Chronic illnesses demand patient-centred care that focuses on the patient’s individual healthcare needs. Palliative care improves the patients’ and caregivers’ quality of life by providing pain and symptom relief through a holistic approach after the disease is diagnosed. Though there are various models followed in different countries, home-based palliative care is preferred by patients who wish to stay close to their loved ones at their end of life. For providing home-based care, there are certainly important elements that have to be taken care of before planning the implementation because every country has its own healthcare needs, system, and context. India is a developing country where isolated Palliative Care is practiced, hence the situation demands the need of addressing the essential elements that can be included in the protocol of home-based palliative care to enhance the quality of care. Therefore, this study aims to identify a few elements needed to provide home-based palliative care in the Indian context. A rapid review was conducted where seven studies were included that mentioned the elements of home-based palliative care. The electronic databases searched were MedLine, PubMed, and Cochrane databases of systematic reviews. The review was carried out over a period of 8 weeks in June and July 2022. Seven common essential themes were identified; (i) inter-sectoral and inter-professional cooperation, (ii) trust and safety, (iii) holistic management, (iv) non-academic palliative care, (v) spiritual care, (vi) support to caregivers, and (vii) funding and financial support. Our review of effective palliative care models explicates the essential elements for quality home-based care for patients with a terminal illness. The application of the elements must be relevant to the local context due to the huge diversity of the country.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"5 4","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135325761","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gloria Melissa Pacheco-Feijoó, Jose Percy Amado-Tineo, Ricardo Plancarte-Sánchez, Carlos Contreras Valdivia, José M. López-Millán
{"title":"Efficacy and Safety of Celiac Plexus Neurolysis in the Treatment of Chronic Pain Secondary to Oncological Pathology of the Upper Hemiabdomen: A Systematic Review and Meta-Analysis","authors":"Gloria Melissa Pacheco-Feijoó, Jose Percy Amado-Tineo, Ricardo Plancarte-Sánchez, Carlos Contreras Valdivia, José M. López-Millán","doi":"10.25259/ijpc_203_2022","DOIUrl":"https://doi.org/10.25259/ijpc_203_2022","url":null,"abstract":"Objectives: The management of chronic pain among patients with abdominal cancer is complex; against that, the neurolysis of the celiac plexus (CPN) is the best technique at the moment t o determine the efficacy and safety in the treatment of chronic pain secondary to oncological pathology of the upper abdomen. Material and Methods: This was a systematic review of controlled clinical trials between 2000 and 2021, in the sources MEDLINE/PubMed, Cochrane, Scopus, Web of Science, and Google Scholar. Three independent evaluators analysed the results of the bibliographical research. The quality of the studies was assessed with the Jadad scale and the mean difference (95% confidence interval) and heterogeneity of the studies (I2) were calculated with Review Manager 5.3. Results: Seven hundred and forty-four publications were identified, including 13 studies in the qualitative synthesis and three studies in the quantitative synthesis. No difference was found in the decrease in pain intensity between 1 and 12 weeks after the intervention, comparing the experimental group with the control ( P > 0.05). The adverse effects related to neurolysis were not serious and transitory, mentioning the most frequent adverse effects and reporting a percentage between 21% and 67% (with 17% for echoendoscopic neurolysis and 49% for percutaneous neurolysis). Conclusion: Celiac plexus neurolysis for the treatment of severe chronic pain secondary to oncological pathology in the upper hemiabdomen produces similar pain relief as conventional pharmacological analgesic treatment. It is a safe analgesic technique since the complications are mild and transitory.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"117 5","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135511724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nishtha Singhal, Stephen Rajan Samuel, Vijaya K. Kumar, Harsha Prasad, M. V. Saraswathy
{"title":"Evaluation of Chemotherapy Induced Peripheral Neuropathy, Sarcopenia and Fatigue in Children with Acute Lymphoblastic Leukaemia and Lymphoma in Tertiary Care Hospital, Dakshina Kannada","authors":"Nishtha Singhal, Stephen Rajan Samuel, Vijaya K. Kumar, Harsha Prasad, M. V. Saraswathy","doi":"10.25259/ijpc_143_2023","DOIUrl":"https://doi.org/10.25259/ijpc_143_2023","url":null,"abstract":"Objectives: The study aims to assess the proportion and magnitude of chemotherapy-induced peripheral neuropathy (CIPN) and other common complications reported in children with acute lymphoblastic leukaemia (ALL)/ acute lymphoblastic lymphoma (LBL) undergoing chemotherapy. Material and Methods: The study included children between 5 and 18 years old with ALL/LBL undergoing chemotherapy in Tertiary Care Hospitals, Mangalore. The study was conducted using various instruments, including paediatric-modified total neuropathy scale for CIPN, handheld dynamometer for muscle strength, bioimpedance analyser for muscle mass, timed up-and-go test for physical performance, and national comprehensive cancer network (NCCN) guidelines for scoring cancer-related fatigue at 3-time points. The collected data were analysed by IBM Statistical Package for the Social Sciences version 29 using Z-scores with standard deviation for distinct ALL/LBL types. In addition, the Paired t -test compared the baseline outcome to the 3 rd and 6 th time points. Results: The study evaluated 25 children with ALL undergoing chemotherapy based on the UKALL 2003 protocol during their maintenance phase. The study found that 25 children experienced CIPN, with changes in sensory and pin sensibility scores at 3 and 6 months. The study found a significant change in handgrip strength, body mass index, and muscle mass at 3 months, with no significant change in physical performance over time. Fatigue scores increased from baseline to 3 months, with significant changes observed for the 7–12 years age group at 3 months but not for the 5–6 years age group at 6 months. Conclusion: Children with ALL/LBL undergoing chemotherapy experience CIPN and other side effects such as sarcopenia and fatigue. The study highlights the potential benefits of physiotherapy interventions and supportive care strategies aimed at managing the adverse effects of chemotherapy in children with ALL/LBL.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"13 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135511587","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Impact of Establishing a Pain Clinic in a Rural Cancer Centre Based on the Knowledge and Experience of the Pain of Cancer Patients – A Prospective, Questionnaire-Based Study","authors":"Harsimran Singh Walia, Jagdeep Sharma, Mansi Chatterjee Walia, Lalita Gouri Mitra, Atin Goyal, Sofia Jaswal","doi":"10.25259/ijpc_54_2023","DOIUrl":"https://doi.org/10.25259/ijpc_54_2023","url":null,"abstract":"Objectives: Unrelieved pain significantly affects the quality of life of cancer patients. In rural settings, cancer patients do not have information or knowledge about how to control their pain because of a lack of resources or awareness. We conducted an interventional, questionnaire-based prospective study in a rural tertiary care oncological centre to look for the impact of establishing a pain clinic based on the knowledge and experience of cancer patients regarding their cancer pain. Material and Methods: The patient pain questionnaire was filled by 380 random non-surgical patients complaining of pain who visited our centre for the treatment of cancer. The information generated was used for setting up a pain clinic covering all aspects of cancer pain. After 3 months of starting the pain clinic services, all these patients who visited the pain clinic at least once were again surveyed similarly. Out of 380 patients, we could only follow up with 348 patients and other patients were lost to follow-up. Results: After visiting the pain clinic the mean value of the response for most of the questions decreased suggesting that the responses became more favourable as the knowledge improved and the experience of the pain became less distressing for the patients. The mean value of the responses to all the questions related to the overall knowledge of cancer pain before visiting a pain clinic was 4.22 ± 1.58 and after visiting a pain clinic was 3.83 ± 0.95 which was statistically significant ( P = 0.000). The mean value of the responses to the questions related to the overall experience of the pain before visiting the pain clinic was 3.81 ± 1.42 and after visiting the pain clinic was 2.14 ± 1.05 which was highly significant ( P = 0.000). We found out that the patients who had a higher mean value of the responses (8–10) suggesting the most unfavourable responses benefitted the most and the number of patients having the most unfavourable responses decreased after visiting the pain clinic. Conclusion: In a rural tertiary healthcare cancer centre, the establishment of a pain clinic increased the general understanding and experience of cancer patients regarding their pain and pain management.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"99 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135512521","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Can Artificial Intelligence aid communication? Considering the possibilities of GPT-3 in Palliative care","authors":"Rajashree Srivastava, Shikha Srivastava","doi":"10.25259/ijpc_155_2023","DOIUrl":"https://doi.org/10.25259/ijpc_155_2023","url":null,"abstract":"Objectives: This article reviews the developments in artificial intelligence (AI) technologies and their current and prospective applications in endof-life communications. It uses Open AI’s generative pre-trained transformer 3 (GPT-3) as a case study to understand the possibilities of AI-aided communication in Palliative Care. Material and Methods: Open AI’s GPT-3 was taken as a case study where responses were generated through the GPT-3 beta playground (Davinci engine) and were scrutinised by six mental health professionals (MHPs) working in a palliative care setting in India. They were tasked to evaluate the responses generated by the AI (the identity was not revealed until a part of the study was completed) in a simulated palliative care conversation with another MHP posing as a patient. The aim was to undermine whether the professionals were able to detect that the responses were indeed generated by a machine and did they approve or disapprove of the responses. Results: The GPT-3 playground with the right prompts produced remarkable, often surprising texts and responses that imitated human interaction. However, glitches such as redundancy were noticed along with strongly held opinions in certain questions related to faith, death, and life after death. Conclusion: AI-assisted communication in palliative care could be used to train professionals in the palliative care field using it as a simulation in training. It could also be used as a therapeutic intervention for the purpose of engagement and philosophical dialogue after certain modifications. However, it would have its own limitations such as it cannot replace a human agent just yet.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"9 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135888328","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Medication Considerations in a Cancer Patient with a Jejunostomy Tube (J-tube)","authors":"Meenakshi V. Venketeswaran","doi":"10.25259/ijpc_145_2022","DOIUrl":"https://doi.org/10.25259/ijpc_145_2022","url":null,"abstract":"","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"32 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135854331","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Using Social Constructivist Learning Theory to Unpack General Practitioners’ Learning Preferences of End-of-Life Care: A Systematically Constructed Narrative Review","authors":"Shrikant Atreya, Soumitra Shankar Datta, Naveen Salins","doi":"10.25259/ijpc_50_2023","DOIUrl":"https://doi.org/10.25259/ijpc_50_2023","url":null,"abstract":"General practitioners play a vital role in providing community-based palliative care to patients reaching end of life. In order for GPs to upgrade their skills at end-of-life care delivery, it is imperative that training programs be aligned to their learning needs and preferences. A narrative review was conducted using the electronic databases PubMed, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science, and Cochrane from 01/01/1990 to 31/05/2021. 23 articles (of 10037 searched) were included for the review. Following themes were generated: Value attributed to end-of-life care learning, experience and reflection as a departure point for learning, learning as embedded in the clinical context; autonomy to decide upon their learning needs and learning preferences, learning as a transformative process; and learning as embedded in social interaction and interpretation. Training programs that are aligned to the preferences of GPs will encourage a larger clientele of GPs to access them.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"3 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135193677","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Development and Validation of Total Pain Scale for Evaluation of Total Pain in Cancer Patients.","authors":"Suraj Pal Singh, Rajeev Aggarwal, Rajeev Kumar Malhotra, Varun Shekhar, Vikram Partap Singh, Sushma Bhatnagar","doi":"10.25259/IJPC_256_2022","DOIUrl":"10.25259/IJPC_256_2022","url":null,"abstract":"<p><strong>Objectives: </strong>Cancer pain has all the components of total pain such as physical, social, psychological, and spiritual. These components contribute to the overall pain experience in cancer patients. Many instruments have been developed till date to assess the effect of pain in cancer patients but none of the instruments include all components of total pain. In this article, we describe the development and validation of the total pain scale (TPS) for the evaluation of total pain in cancer patients with pain. This study aimed to develop and validate a questionnaire for the evaluation of total pain in cancer patients with pain.</p><p><strong>Material and methods: </strong>This study included a review of existing pain questionnaires for cancer pain for item pool generation. Items were generated in the Hindi language by six stakeholders to create 23 items to develop TPS. TPS was applied to 300 Hindi-speaking cancer patients. Bivariate correlation was used to reduce the number of items as well as construction of the domain followed by factor analysis to finalise TPS. Confirmatory factor analysis (CFA) was performed for testing the validity and reliability of TPS.</p><p><strong>Results: </strong>TPS is an 18-item scale composed of four domains (physical, social, spiritual and psychological domain). The internal consistency of TPS and its subscales was found to be very good (a = 0.84-0.88). CFA and structural equation modeling Goodness of fit has confirmed that model 4 is the best fit as it yielded a lesser root-mean-squared error of approximation value of 0.062 and a greater comparative fit index, Tucker-Lewis index value of 0.944. The convergent and divergent validity of TPS and its domain was good.</p><p><strong>Conclusion: </strong>This study reports TPS to be a brief (18-item), valid, and reliable questionnaire in the Hindi language for assessment of all components of total pain in cancer patients with pain.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"29 3","pages":"312-323"},"PeriodicalIF":1.1,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/56/c3/IJPC-29-312.PMC10493691.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10244001","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mayank Sharma, Sonali Sarkar, S Adinarayanan, Gunaseelan Karunanithi
{"title":"Mapping of Palliative Care Services and Challenges in Implementation of National Program for Palliative Care in Puducherry.","authors":"Mayank Sharma, Sonali Sarkar, S Adinarayanan, Gunaseelan Karunanithi","doi":"10.25259/IJPC_146_2022","DOIUrl":"10.25259/IJPC_146_2022","url":null,"abstract":"<p><strong>Objectives: </strong>The purpose of this study was to map ongoing palliative care services and describe the characteristics of providers, recipients, level of care, and approach. Second, it seeks to investigate the difficulties encountered in implementing NPPC in the Puducherry district of UT Puducherry. This study aims to review the challenges in its implementation.</p><p><strong>Material and methods: </strong>The study using both quantitative and qualitative design, including geospatial mapping of organisations, describing service delivery characteristics and exploring challenges faced in implementing NPPC, was conducted from July 2021 to January 2022. In-depth interviews were conducted with seven healthcare providers, four patients and three caregivers, as well as key informant interviews with six doctors in administration.</p><p><strong>Results: </strong>Thirteen organisations providing palliative care to population of Puducherry district of union territory Puducherry and neighbouring districts of Tamil Nadu were identified. Mapped organisations were primarily concentrated in urban areas. Morphine was available only at three medical colleges, providing outpatient palliative care services. Non-governmental organisations provided only home-based palliative care services and the hospices provided both in-patient and home-based services. Key barriers perceived by the health system were difficulty in procuring morphine, inadequate personnel and inadequate funding. Few barriers perceived by patients/family were stigma faced in community, psychological challenges and poor quality of care.</p><p><strong>Conclusions: </strong>Palliative care services are mainly available in urban areas and through private hospices. There is a need to implement palliative care program through the public health system to improve the accessibility in the rural areas.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"29 3","pages":"266-278"},"PeriodicalIF":1.1,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/52/6b/IJPC-29-266.PMC10493682.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10232129","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}