Intramedullary Spinal Cord Metastases of Malignant Melanoma: A Rare Case Report on Paraplegia in Palliative Care.

Rates of malignant melanoma have been increasing in frequency. Studies have shown that up to 46% of patients with melanoma will experience metastases to the central nervous system. Intramedullary spinal cord metastasis of malignant melanoma is rare. In advanced cancers, surgery might not be possible, and radiotherapy with corticotherapy is a viable option. In the following case, a 54-year-old male presented to the clinic with an intramedullary tumor in the D1 region. He was successfully managed with an integrated palliative care approach with concomitant cancer-directed therapy.

Impact of Educational Training in Improving Skills, Practice, Attitude, and Knowledge of Healthcare Workers in Pediatric Palliative Care: Children's Palliative Care Project in the Indian State of Maharashtra.

BACKGROUND: The "Children's Palliative Care Project" was initiated in October 2010 in the Indian state of Maharashtra with a view to improve the quality of life of children with life-limiting conditions. This study evaluates its education and training component through a questionnaire. MATERIALS AND METHODS: A cross-sectional survey was carried out pre-/post-training among 258 doctors, nurses, social workers, and counselors at three sites in Maharashtra in March 2015. Descriptive statistics were used for data analysis. RESULTS: Sixty-two participants responded. Posttraining, doctors and the nurses had a better level of knowledge, skill set, and attitude; whereas social workers and counselors fared better with prevailing care practices. Participants advocated using morphine only when other analgesics had failed and suggested ways for better service delivery of care. CONCLUSION: The study gives a rough idea of the prevailing practice of pediatric palliative care among the health-care workers (who participated in the survey) and suggests practical ways to improve it.

Prevalence and Intensity of Dyspnea in Advanced Cancer and its Impact on Quality of Life.

CONTEXT: Dyspnea is a subjective, multidimensional experience of breathing discomfort, commonly seen in patients with advanced cancer. To find the impact of dyspnea on the quality of life in this population, it is important to understand the prevalence and factors influencing dyspnea. AIMS: This study aimed to determine the prevalence, intensity, and factors influencing dyspnea in advanced cancer and determine its impact on overall quality of life. SETTINGS AND DESIGN: This was a prospective cross-sectional study. The prevalence of dyspnea and its impact on quality of life was determined in 500 patients registered with palliative medicine outpatient department. SUBJECTS AND METHODS: The patients were asked to fill a set of questionnaires, which included the Cancer Dyspnea Scale (translated and validated Hindi and Marathi versions), visual analog scale for dyspnea and EORTC QLQ C 15 PAL. Details of demographics, symptomatology, and medical data were collected from the case record sheets of the patients. STATISTICAL ANALYSIS USED: Descriptive statistics, univariate, and multiple regression analysis were used to calculate the results. RESULTS: About 44.37% of the patients experienced dyspnea. Dyspnea increased with worsening anxiety, depression, fatigue, appetite, well-being, pain, lung involvement by primary or metastatic cancer, performance status, and deteriorating overall quality of life and emotional wellbeing. CONCLUSIONS: The prevalence of dyspnea in advanced cancer patients is as high as 44.37% and has a negative impact on their overall quality of life.

Exploring Education and Training Needs in Palliative Care among Family Physicians in Mumbai: A Qualitative Study.

CONTEXT: Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients. AIMS: This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. SETTINGS AND DESIGN: Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. SUBJECTS AND METHODS: Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes. RESULTS AND CONCLUSIONS: FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.

Bradycardia with Syncope in Carotid Sinus Syndrome: A Rare Case Report in Palliative Care.

Emergencies in palliative care need to be defined by the potential distress that a clinical issue raises for a person. A 58-year-old male with carcinoma vallecula referred for palliative care presented with recurrent syncopal attacks. On examination, a swelling at the left angle of mandible pressing on the carotid sinus was detected. A clinical diagnosis of carotid sinus syndrome was made, which is an exaggerated response to carotid sinus baroreceptor stimulation and results in dizziness or syncope from transient diminished cerebral perfusion. Rapid identification and judicious interventions in time (cardiac consultation, intravenous atropine 0.5 mg, and temporary pacemaker implantation) were able to manage a potentially correctable cardiovascular emergency in his case.

Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit.

PURPOSE: To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services. PATIENTS AND METHODS: Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from January 1, 2010 to December 31, 2014. Descriptive summaries of demographic, clinical variables, and patient circumstances at the time of referral and during end-of-life care were examined. RESULTS: A total of 1135 patients were referred from pediatric oncology with a gradual increasing trend over 5 years. About 84.6% consultations took place in the outpatient setting. In 97.9% of the cases, parents were the primary caregivers. Availability of specialist pediatric health-care services at local places was available in 21.2% cases and 48% families earned <5000 INR (approximately 73 USD) in a month. Around 28.3% of the referrals were from leukemia clinic and maximum references were late with 72.4% patients having advanced disease at presentation. 30.3% of the referrals were made for counseling and communication and 54.2% had high symptom burden during referral. After referral, 21.2% patients continued with oral metronomic chemotherapy and 10.5% were referred back to oncology services for palliative radiotherapy. Only 4.9% patients had more than 2 follow-ups. 90.8% of the patients were cared for at home in the last days of illness by local general practitioners. 70.6% of the deaths were anticipated. CONCLUSIONS: Oncologists referred patients late in the course of disease trajectory. Most of the referrals were made for counseling and communication, but many patients had high symptom burden during referral.

Specialist Pediatric Palliative Care Prescribing Practices: A Large 5-year Retrospective Audit.

INTRODUCTION: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. METHODS: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014) to evaluate prescribing practices in children with advanced cancer. RESULTS: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%), and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. CONCLUSIONS: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription noncompliance by almost two-thirds of patients is alarming and necessitates intense patient, family, and caregiver education and empowerment.

Impact of specialist home-based palliative care services in a tertiary oncology set up: a prospective non-randomized observational study.

BACKGROUND: Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. MATERIALS AND METHODS: Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters. RESULTS: Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. CONCLUSION: Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.

End-of-life care policy: An integrated care plan for the dying: A Joint Position Statement of the Indian Society of Critical Care Medicine (ISCCM) and the Indian Association of Palliative Care (IAPC).

PURPOSE: The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process. EVIDENCE: The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012.[2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.[3]. METHOD: An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India.

End of life care policy for the dying: consensus position statement of Indian association of palliative care.

PURPOSE: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. EVIDENCE: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. RECOMMENDATIONS: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education.

Creation of Minimum Standard Tool for Palliative Care in India and Self-evaluation of Palliative Care Programs Using It.

BACKGROUND: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. AIMS: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. MATERIALS AND METHODS: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. RESULTS: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. CONCLUSIONS: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.

Prevalence of dyspnoea and usage of opioids in managing dyspnoea in advanced cancer patients: a longitudinal observational multi-centre study from India.

Context: Breathlessness is one of the devastating symptoms experienced by patients with advanced cancer and can be very challenging to manage. Objectives: To find the point prevalence of dyspnoea in advanced cancer patients presenting to palliative care out-patient clinics, and the usage of opioids in palliation of dyspnoea. Methods: We conducted a prospective observational study among all consecutive patients presenting to the outpatient clinics of six cancer centres in India from different parts of the country. In addition to routinely documented demographic and clinical data from patient charts, study investigators collected information on the Edmonton Symptom Assessment System, Cancer Dyspnoea Scale (CDS) and European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire Core 15 Palliative Care. We calculated the prevalence of dyspnoea and documented the usage of opioids in palliation of dyspnoea using tests of differences across patient characteristics. Results: Between May 1, 2019, and April 30, 2020, 5,541 patients were screened for eligibility, and 288 were enrolled (48 patients from each of the six centres). We analysed the data of 288 patients, of which 36.4% had dyspnoea, with 28.5% with moderate to a severe degree (>4/10). Tiredness and loss of appetite were found to have associations with dyspnoea which were statistically significant on multivariate analysis. Standard palliative care management and routine usage of opioids preceded improvement in dyspnoea scores, CDS scores and quality of life scores throughout 7 days. Conclusion: Dyspnoea is a common symptom in advanced cancer patients, presenting to outpatient clinics, and routine documentation of dyspnoea with appropriate usage of opioids helps in mitigation. Key message: The article suggests that breathlessness is a common problem in advanced cancer patients and opioid prescription preceded symptom improvements in such patients.

Primary palliative care competency framework for primary care and family physicians in India-Collaborative work by Indian Association of Palliative Care and Academy of Family Physicians of India.

The discrepancy in the demand for palliative care and distribution of specialist palliative care services will force patients to be eventually cared for by primary care/family physicians in the community. This will necessitate primary care/family physicians to equip themselves with knowledge and skills of primary palliative care. Indian National Health Policy (2017) recommended the creation of continuing education programs as a method to empower primary care/family physicians. With this intention, a taskforce was convened for incorporating primary palliative care into family/primary care practice. The taskforce comprising of National and International faculties from Palliative Care and Family Medicine published a position paper in 2018 and subsequently brainstormed on the competency framework required for empowering primary care/family physicians. The competencies were covered under the following domains: knowledge, skills and attitude, ethical and legal aspects, communication and team work. The competency framework will be presented to the National Board of Examinations recommending to be incorporated in the DNB curriculum for Family Medicine.

Wilms' tumor: An update.

Wilms' tumor (WT) is the commonest pediatric renal tumor, predominantly seen in children less than five years of age. The majority of patients present with an abdominal lump and CT scan is the usual imaging modality for determining the extent of disease. With multimodality management, the results of treatment of WT have improved dramatically over the last 50 years. The treatment protocols have been devised and modified repeatedly depending on evidence from randomized trials by several cooperative groups - mainly National Wilms' Tumor Study Group (NWTSG) and the International Society of Pediatric Oncology (SIOP). The NWTSG recommends primary surgery followed by chemotherapy while SIOP advocates four weeks of chemotherapy prior to surgery. The regimen, dose and duration of chemotherapy have been repeatedly modified to reduce toxicity while maintaining efficacy. The role of radiation therapy has also been customized. Most centers have reported excellent survival rates with the modern day treatment protocols, except in patients with an unfavorable histology. The results of treatment of relapsed WT have also improved with newer drugs and combinations being used for the same.

Validation of "Cancer Dyspnea Scale" in Patients With Advanced Cancer in a Palliative Care Setting in India.

CONTEXT: Assessment of dyspnea in patients with advanced cancer is challenging. Cancer Dyspnea Scale (CDS) is a multidimensional scale developed for the measurement of dyspnea. It is available only in Japanese, English, and Swedish and has not been validated before in the Indian languages. OBJECTIVE: The objective was to describe the process of validation and reliability testing of CDS in Indian advanced cancer patients. METHODS: This is a prospective observational study conducted in the palliative care clinic of a tertiary cancer center in Mumbai. The English version of CDS was translated into Indian languages-Hindi (CDS-H) and Marathi (CDS-M). One hundred twenty newly registered eligible patients (60 for CDS-H and 60 for CDS-M) were enrolled into the study consecutively. They were asked to fill CDS (translated version) and Visual Analogue Scale for dyspnea. Only baseline measures were used. RESULTS: Validity was separately analyzed for CDS-H and CDS-M. The results showed good construct validity between CDS-H and CDS-M. Intersubscale correlation was done by calculating the Pearson's correlation coefficient (mean r = 0.64 and 0.764 for CDS-H and CDS-M, respectively). Convergent validity was calculated by computing the correlation of each factor with VAS-D scores and was found statistically significant (P < 0.001; average r ranging from 0.706 to 0.714). Reliability of the scale was determined by its internal consistency (Cronbach's alpha coefficient ranging from 0.716 to 0.879). CONCLUSION: This study demonstrates that CDS-H and CDS-M are valid and reliable multidimensional scales, which can be used to assess dyspnea in patients with advanced cancer.

Neuropathic pain: a personal case reflection on a critical incident.

Neuropathic pain is a distressing symptom for the patient and a difficult symptom for the physician to treat. There is lack of evidence-based clinical guidelines for the management of malignant neuropathic pain. The case reflection is a personal account of what has been learnt from a critical incident in a particular patient in the management of neuropathic pain. Psychological issues are known to increase pain percetion and affect the quality of life. The case reflection explores problem areas, defines lacunae in knowledge, and demonstrates active learning of the management of neuropathic pain through reflective practice.

Is there a Role of Palliative Care in the Neonatal Intensive Care Unit in India?

Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies who are not going to "get better," the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to "build a case" for palliative care in the Indian NICU setting.

Paediatric palliative care: theory to practice.

Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice.

Nasopharyngeal carcinoma in children: comparison of conventional and intensity-modulated radiotherapy.

PURPOSE: To evaluate the efficacy of intensity-modulated radiotherapy (IMRT) in reducing the acute toxicities associated with conventional RT (CRT) in children with nasopharyngeal carcinoma. PATIENTS AND METHODS: A total of 36 children with nonmetastatic nasopharyngeal carcinoma, treated at the Tata Memorial Hospital between June 2003 and December 2006, were included in this study. Of the 36 patients, 28 were boys and 8 were girls, with a median age of 14 years; 4 (11%) had Stage II and 10 (28%) Stage III disease at presentation. All patients had undifferentiated carcinoma and were treated with a combination of chemotherapy and RT. Of the 36 patients, 19 underwent IMRT and 17 underwent CRT. RESULTS: After a median follow-up of 27 months, the 2-year locoregional control, disease-free, and overall survival rate was 76.5%, 60.6%, and 71.3%, respectively. A significant reduction in acute Grade 3 toxicities of the skin (p = 0.006), mucous membrane (p = 0.033), and pharynx (p = 0.035) was noted with the use of IMRT. The median time to the development of Grade 2 toxicity was delayed with IMRT (skin, 35 vs. 25 days, p = 0.016; mucous-membrane, 39 vs. 27 days, p = 0.002; and larynx, 50 vs. 28 days, p = 0.009). The duration of RT significantly influenced disease-free survival on multivariate analysis (RT duration >52 days, hazard ratio = 5.49, 95% confidence interval, 1.14-26.45, p = 0.034). The average mean dose to the first and second planning target volume was 71.8 Gy and 62.5 Gy with IMRT compared with 66.3 Gy (p = 0.001) and 64.4 Gy (p = 0.046) with CRT, respectively. CONCLUSION: The results of our study have shown that IMRT significantly reduces and delays the onset of acute toxicity, resulting in improved tolerance and treatment compliance for children with nasopharyngeal carcinoma. Also, IMRT provided superior target coverage and normal tissue sparing compared with CRT.

Perioperative interstitial brachytherapy for soft tissue sarcomas: prognostic factors and long-term results of 155 patients.

BACKGROUND: The goal of this study was to evaluate the efficacy of temporary interstitial brachytherapy (BRT) for patients undergoing combined modality management of soft tissue sarcomas (STS). METHODS: From January 1990 to December 2003, 155 adults 18-88 years of age (median = 42 years) with STS who had received BRT as part of locoregional treatment were included in this review. Sixty-four percent were males. Sixty-nine percent had primary lesions. Sixty percent had lesions involving the lower extremities. Spindle cell sarcoma (28%) and synovial sarcoma (16%) were the most common histologic types and 51% had grade III lesions. Treatment included wide local excision of primary tumor with BRT with or without external beam radiotherapy (EBRT). RESULTS: After a median followup of 45 months, the local control (LC), disease-free survival (DFS), and overall survival (OS) for the entire cohort was 71%, 57%, and 73%, respectively. DFS was superior for superficial tumors compared with that for deep tumors (96% vs. 54%, P =.02). Patients with a tumor less than 5 cm had superior OS (88% vs. 63%, P =.05). Cumulative radiotherapy dose greater than 60 Gy had a significant positive impact on LC (P = .003), DFS (P =.003), and OS (P =.048). Subcutaneous fibrosis (21%) was the major complication. CONCLUSIONS: Temporary perioperative iridium-192 interstitial BRT with or without EBRT after function-preserving surgery results in satisfactory outcome in patients with STS. Both low dose rate and high dose rate BRT are equivalent in terms of disease control and complications when used alone or in combination with EBRT. BRT results in fewer complications compared with the combination of BRT and EBRT.