Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children's Hospital.

Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative care evidence is limited. This study describes the development and implementation of a neonatal palliative care program within a neonatal intensive care unit (NICU) at a government hospital, describing the implementing an 8-month pilot palliative care program for neonates, including the patterns of care, and barriers and enablers of success. The hospital-based palliative care team included trained pediatric palliative care physicians, a nurse, and a counselor. There was a steady increase in monthly referrals. There were 110 referrals in total, including 89 (81%) deaths and 18 (16%) babies were alive at the time of final follow-up, 10 months after the pilot program was completed. The program addressed physical symptoms, including providing morphine, as well as psychosocial and spiritual concerns of families. A model of hospital-based palliative care for neonates can be implemented within NICUs in tertiary government hospitals in India. Neonatal palliative care programs should include partnerships with charitable organizations to support implementation costs and provide palliative care training, mentorship, and capacity-building support.

Pediatric Palliative Care Program Implementation in LMICs: A Systematic Review using SWOT Analysis.

CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. OBJECTIVES: We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. METHODS: Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. RESULTS: From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including nine from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. CONCLUSION: PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.

The Introduction and Experiences of Methadone for Treatment of Cancer Pain at a Low-resource Governmental Cancer Center in India.

OBJECTIVES: This study aimed to describe the clinical experience of the health-care professionals (HCPs) responsible for the introduction of methadone, for the treatment of complex cancer pain, at a low-resource hospital in India in a patient-group, burdened by illiteracy, and low socio-economic status. MATERIALS AND METHODS: Ten HCPs: Four medical doctors, four nurses, one pharmacist, and one hospital administrator were interviewed. The interviews are examined using a qualitative conventional content analysis. RESULTS: The interviews showed a confidence amongst the HCPs, responsible for the safe introduction of methadone in a stressful and low-resource surrounding, to patients with cancer pain and the different aspects of methadone, as initiation, titration, and maintenance of treatment. CONCLUSION: Introduction of methadone for cancer pain management is safe and feasible although low resources in a challenging hospital setting and care environment.

Impact of a Longitudinal Intervention to Improve Care Coordination between a Hospital and a Hospice: A Quality Improvement Project.

OBJECTIVES: When patients with advanced cancer transition from systemic cancer treatments at MNJ Institute of Oncology to palliative and end-of-life care at a separate stand-alone non-governmental organisation-run hospice facility, there is insufficient transfer of health information, including details of cancer diagnosis and staging, past treatments, imaging reports and goals for future care. Without this information, the hospice care team is not adequately prepared to receive and deliver high-quality palliative care for these patients. This project aims to improve the care coordination between the hospital and hospice. MATERIALS AND METHODS: The measures used are the self-reported confidence score on a scale of 0 to 10 related to knowledge about plan of care among staff who receives patients at hospice at baseline and during and after interventions. Interventions included recognizing the workplace culture and promoting ownership of the tasks, enhancing communication by creating user-friendly transfer forms and on-going assessment of the process. RESULTS: Improvement in the care coordination in terms of communication of patient goals of care, from hospital to hospice. CONCLUSION: QI project and the steps involved helped the team to work towards solutions objectively. Seemingly excellent ideas may not be the most impactful and data collection demonstrates this and helps identify the most successful interventions.

The Use of Methadone in Pediatric Cancer Pain - A Retrospective Study from a Governmental Cancer Center in India.

BACKGROUND: The management of cancer-related pain relies on access to opioids. When regular opioids are not tolerated, or are insufficient, methadone is an affordable and effective analgesic. AIM: The aim of the project was to describe the pattern of use and clinical experience of methadone in pediatric cancer pain at a governmental cancer hospital in Hyderabad, one of the four Indian cancer centers with permission to prescribe methadone. METHODS: This was a retrospective study of medical records of all children, under the age of 18, who had been prescribed methadone from September 9, 2017, to November 19, 2019. Data on analgesic effect, prior and concomitant analgesic treatment, opioid side effects, and the handling of methadone were analyzed. RESULTS: A total of 11 children were identified and studied. Methadone was introduced mainly when pain was uncontrolled by regular opioids. Initial daily doses ranged from 1 to 15 mg. The duration of treatment ranged from 7 to 307, with a median of 50 days in the nine patients where treatment exceeded one single dosage. Good analgesic effect was reported in 5/9 children, unchanged from previous analgesic treatment in three patients and without any effect in one child. No severe side effects were reported. CONCLUSION: Low-dose methadone in the treatment of pediatric cancer pain at a low-resource cancer center was safe and well tolerated by the patients, with long treatment durations. It was safely managed, administered with single to double daily dosages, hence easy for patients and family to handle, and an affordable treatment option.

The Use of Methadone in Adult Patients with Cancer Pain at a Governmental Cancer Center in India.

BACKGROUND: Management of cancer-related pain relies on the access to opioids. When regular opioids as morphine are not tolerated or are insufficient, adjuvant opioids as methadone are an affordable and effective analgesic. AIM: The aim of the project was to describe the pattern of use and clinical experiences of methadone in patients with cancer-related pain at a low-resource hospital in Hyderabad, one of few Indian cancer centers with permission to prescribe methadone. METHODS: Medical records of all patients who had been prescribed methadone, September 9, 2017 and November 19, 2019 were studied retrospectively. Data on analgesic treatment and opioid side effects were analyzed. RESULTS: A total of 93 adult cancer patients were included in the study. A majority of patients (79%) were prescribed opioid analgesic, mainly morphine, before methadone introduction. The initial daily dose of methadone ranged between 5 and 22.5 years and in the vast majority of the patients 5 mg, divided in two daily administrations. A good analgesic effect, with decreased pain, was reported in 60% of the patients. No severe side effects were reported. CONCLUSIONS: In this study, methadone as a primary opioid was used with a good analgesic effect for cancer pain in a low-resource setting. Indication for methadone was mainly uncontrolled pain with a regular opioid treatment. No severe adverse effects were reported. Further research and prospective studies are needed on methadone treatment in low-resource settings to establish the robust guidelines to support prescribing physicians.

Using Virtual Learning to Build Pediatric Palliative Care Capacity in South Asia: Experiences of Implementing a Teleteaching and Mentorship Program (Project ECHO).

Palliative care is an important component of pediatric cancer treatment that provides holistic support for children and their families. In low- and middle-income countries, where 98% of the children needing palliative care reside, access to palliative care services is often very limited. Training opportunities for healthcare professionals are essential to improve access to palliative care in these settings. Virtual learning, which brings training and mentorship directly to learners, can improve access to educational opportunities for staff in resource-limited settings. In this report, we describe a novel and evolving model of building pediatric palliative care (PPC) capacity in South Asia. We describe the design, implementation, challenges, and subsequent modifications of our program, as well as the impact of the program for participants and for PPC service delivery in South Asia. Our teleteaching and mentoring program (Project ECHO) [Extension for Community Healthcare Outcomes] consisted of biweekly videoconference sessions with didactic teaching and case-based discussions. The program focused on engaging participants in meaningful learning by focusing on opportunities for participant interaction through teachings and case discussions. Participants identified the program as particularly beneficial for improving their knowledge and confidence in managing seriously ill children. Project ECHO is a novel model of building PPC capacity that is suitable for resource-limited settings. Key modifications to the Project ECHO model include a course-specific leadership team, developing learning plans to address the specific learning needs of participants, focusing on ensuring learner participation during sessions, and using social media and electronic resources to create opportunities for further learning outside of ECHO sessions. These adaptations may improve the efficacy of Project ECHO and others using virtual learning programs in resource-limited settings.

The Palliative Care-Promoting Access and Improvement of the Cancer Experience (PC-PAICE) Project in India: A Multisite International Quality Improvement Collaborative.

Mentors at seven U.S. and Australian academic institutions initially partnered with seven leading Indian academic palliative care and cancer centers in 2017 to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement (QI). From its inception in 2017 to 2020, the Palliative Care-Promoting Accesst and Improvement of the Cancer Experience Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai QI training hub in 2019 with philanthropic support. In 2020, the project which is now named Enable Quality, Improve Patient care - India (EQuIP-India) focuses on both palliative care and cancer teams. EQuIP-India now leads ongoing Indian national collaboratives and training in QI and is integrated into India's National Cancer Grid. Palliative Care-Promoting Accesst and Improvement of the Cancer Experience demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer QI. It is one of the several networked and blended learning approaches with potential for rapid scaling of evidence-based practices.

Palliative Care in Coronavirus Disease 2019 Pandemic: Position Statement of the Indian Association of Palliative Care.

The global pandemic involving severe acute respiratory syndrome-coronavirus-2 has brought new challenges to clinical practice and care in the provision of palliative care. This position statement of the Indian Association of Palliative Care (IAPC) represents the collective opinion of the experts chosen by the society and reports on the current situation based on recent scientific evidence. It purports to guide all health-care professionals caring for coronavirus disease 2019 (COVID-19) patients and recommends palliative care principles into government decisions and policies. The statement provides recommendations for palliative care for both adults and children with severe COVID-19 illness, cancer, and chronic end-stage organ impairment in the hospital, hospice, and home setting. Holistic care incorporating physical, psychological, social, and spiritual support for patients and their families together with recommendations on the rational use of personal protective equipment has been discussed in brief. Detailed information can be accessed freely from the website of the IAPC http://www.palliativecare.in/. We hope that this position statement will serve as a guiding light in these uncertain times.

Low-dose Oral Ketamine as a Procedural Analgesia in Pediatric Cancer Patients Undergoing Bone Marrow Aspirations at a Resource-limited Cancer Hospital in India.

AIM: Many pediatric cancer patients undergo repeated bone marrow aspirations (BMAs) for diagnostic and treatment evaluation purposes. Full anesthesia is the standard of care during this procedure in high-income countries. At hospitals with low resources in low/middle-income countries many children undergo these painful procedures without sufficient pain relief. This study aimed to evaluate the usefulness of low-dose oral ketamine as a procedural analgesic in a low-resource pediatric cancer care department. MATERIALS AND METHODS: Pediatric patients, 4-15 years of age, who underwent BMAs between September 31 and November 30, 2018, were invited to participate. The study was designed as a placebo-controlled, single-blinded trial with three trial groups. Group K received 1.0 mg/kg of ketamine and Group KM received 1.0 mg/kg ketamine with an addition of 0.2 mg/kg midazolam, mixed in juice 30 min before procedures. Group P received placebo consisting of plain juice. All three groups also received the hospital's current standard treatment for procedural pain in BMAs. Patients and caregivers assessed the procedural pain, as did the performing doctors. For the patients, Faces Pain Scale - Revised was used and the Numeric Rating Scale-11 for caregivers and doctors. RESULTS: A total of 87 patients were included in the study distributed with 29 in Group K, 29 in Group KM, and 29 in Group P. Seven patients were excluded, one patient denied participation and the remaining did not meet the inclusion criteria. There was no significant difference between the pain reported by the groups. A total of 69% patients in Group KM and 35% in Group K had somnolence reported as a side effect compared to 14% in Group P. CONCLUSION: We found no significant effects on the procedural pain in any of the treatment groups compared to placebo. There were only mild side effects. The doses of ketamine might be insufficient for this painful and stressful procedure.

Low-Dose Oral Ketamine for Procedural Analgesia in Pediatric Cancer Patients Undergoing Lumbar Puncture at a Resource-Limited Cancer Hospital in India.

Aim: The aim of this study was to evaluate the therapeutic efficacy and safety profile of orally administered low-dose ketamine for procedural pain management in pediatric cancer patients undergoing lumbar puncture (LP) in a resource-limited hospital setting. Methods: Patients between 4 and 15 years of age, with leukemia, undergoing LP were asked to participate. The study was designed as a two-armed blinded placebo-controlled trial where 0.8 mg/kg (bodyweight) of ketamine mixed in juice was given 30 minutes before the procedure to Group K (ketamine) compared with placebo, only juice, to Group P (placebo). In addition, topical analgesia (EMLA®) was given according to established standard of care. Patients and caregivers assessed the pain using the Wong-Baker Faces Pain Rating Scale. Results: A total number of 52 patients, equally distributed between Group K and Group P, were included in the study. The placebo-controlled group had significantly higher self-reported pain score than the group receiving ketamine (p = 0.046), as well as in caregiver-assessed pain (p = 0.033). Only three incidents of mild adverse effects were reported. Conclusion: Low-dose oral ketamine can be safely administered for procedural analgesia in pediatric cancer patients undergoing LP in a resource-limited hospital setting and have significant pain-reducing effect compared with placebo.