Introduction: Cervical cancer is the third most common cancer in India. There is limited data on the treatment of relapsed cervical cancer from India; therefore, we report the outcomes of patients with recurrent cervical cancer who were treated with palliative chemotherapy (CT).
Materials and methods: This was a retrospective study of patients with recurrent cervical cancer who received palliative CT from January 2012 to December 2016. The demographic details, clinical profile and survival outcomes were collected. Patients were treated with carboplatin or paclitaxel and carboplatin. Local radiation was given for symptomatic patients. Patients were assessed for responses clinically and/or radiologically after three and six cycles of CT. Progression-free survival (PFS) and overall survival (OS) were calculated using the Kaplan–Meier method.
Results: Forty-six patients with recurrent cervical cancer were included in this analysis, with a median follow-up of 9.4 months. The median age was 49.5 (25–65) years and the median disease-free interval was 31.3 (2–196) months. Biopsy confirmation of relapse was established in 63%. The median number of CT cycles was six. Twenty-four (52.2%) patients completed six cycles of CT. The overall response rate was 56.5%. Patients with a complete or a partial response were more likely to have PFS > 6 months (p < 0.0001). Median PFS and OS were, respectively, 8.4 (95% CI 6.1–10.7) months and 10.3 (95% CI 6.8–13.8) months. The completion of all cycles of CT and the site of metastasis (nodal vs. visceral or combined) were found to be associated with OS.
Conclusion: Palliative CT with paclitaxel carboplatin is a safe and effective option in Indian patients with recurrent cervical cancer, with more than half of the patients completing the prescribed CT. Further prospective trials may be required to place this treatment in the right context, in this era of immunotherapy and targeted therapy. However, knowing the outcomes in our population and prognostic factors will help in better prognostication of patients, thereby channelling our limited resources where necessary.
India, being home to one -sixth of the world's population has a huge burden of suffering from life limiting diseases. It is estimated that in India the total no. of people who need palliative care (PC)is likely to be 5.4 million people a year. Though PC was introduced nearly 30 years ago, it is still in its infancy with less than 1% of patients having access to PC. India ranks at the bottom of the Quality Of Death Index in overall score. Obstacles are too many and not only include factors like population density, poverty, geographical density, restrictive policies regarding opioid prescription, workforce development at base level but also limited national PC policy and lack of institutional interest in palliative care. However there has been a steady progress in the past few years through community owned PC services. South Indian state of Kerala which has 3% of Indian population, stands out in terms of achieving coverage of palliative care. On the national level recent years saw several palpable changes including the creation of a National Programme for Palliative care and also the Parliament amended India's cumbersome Narcotic Drugs and Psychotropic Substances Act (NDPS) thus overcoming many of the legal barriers to opioid access. Initially WHO and now the IAPC has taken over the responsibility of spreading the message of palliative care in India, but we still have a long way to go. Education of the professionals and sensitization of the public through awareness campaigns are vitals for improving access to PC in India. Process of implementing PC plan into action requires strong Advocacy, political support and integration across all levels of care.
Background: 40 million people in the world are in need of palliative care, but only one-seventh of that population receive services. Underuse of palliative care in low resource countries exacerbates suffering in patients with life limiting illnesses such as cancer.
Objectives: The current study was conducted to identify barriers, facilitators and recommended strategies for informing development of a home-based palliative care intervention for poor and medically underserved rural patients in Kolkata, India.
Methods: Semi-structured interviews were conducted with 20 clinical and patient stakeholders in Kolkata, India. Questions queried current practices for delivering palliative care, along with barriers, facilitators and optimal strategies for implementing homebased palliative care.
Results: We identified some key barriers to palliative care delivery in rural areas: lack of access to palliative care till late stages; patients unaware of their cancer stage; lack of affordability of medication and treatment costs; transportation challenges to access care; strict morphine distribution regulations making it challenging for patients to obtain morphine; cultural factors discouraging patients from seeking palliative care; resistance from medical community to use “rural medical practitioners (RMPs)” to deliver care. We also identified important facilitators, including availability of existing palliative care infrastructure at the cancer center, network of RMPs to serve as CHWs to facilitate palliative care delivery, low morphine cost and family support system for patients.
Conclusion: Our findings provide evidence that a palliative care intervention which leverages an existing CHW infrastructure may be a feasible model for expanding the reach of palliative care to rural underserved patients.
OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
Community-based palliative care services and their integration with public health systems are of considerable contemporary interest. However, the conflicts that emerge in such a complex organizational field comprising multiple stakeholders with diverse interests remain under-examined. Our analysis of community-based palliative care in Kerala identifies four ‘logic conflicts’ that indicate competing frames of reference in an organizational field. These conflicts shape decision-making and coordination and manifest as: 1) professional versus community logics, 2) centralized versus decentralized governance logics, 3) generalist versus specialist care logics, 4) charity versus rights-based logics. We also identify two mechanisms – forming coalitions and fostering plurality – by which actors manage these conflicting logics. We discuss contributions to public health palliative care conversations and implications for nurturing and sustaining care communities.
OBJECTIVE: End-of-life (EOL) care is a developing concept in India, with well-established practices in certain states like Kerala, but not in all the states. As there is a substantial stigma associated with death discussion across the Indian population, the experiences of caregivers of people with advanced cancer have not been explored. Our aim in this study was to explore the experience and perceptions of caregivers of people diagnosed with advanced cancer regarding the quality of the individuals' death.
METHODS: An exploratory study where the caregivers (n = 108) of advanced cancer patients, who died either during hospitalization or at home, were interviewed to assess quality of death (QOD), using an open-ended question to explore the sufferings of the patients in the final days and caregivers' coping mechanism.
RESULTS: Majority of the patients died at home (n = 79, 73.1%). The thematic analysis of the transcripts resulted in seven sub-themes, which were categorized under four major themes, namely 'bodily discomfort', 'psychological experiences' with the sub-themes resilience and existential distress, 'awareness of prognoses' with the sub-themes aware, unaware and conjecture, and 'carers coping' with the sub-themes perceived strain and contentment.
CONCLUSION: Patients under EOL care experience physical and psychological suffering, as reported by the caregivers. Efforts must be undertaken to reduce suffering by means of improving focus on and strengthening symptom management and enhancing psychosocial support, for optimally utilizing the available interventions to manage the physical symptoms and to address the psychosocial issues.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
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.
Background and Aims: Palliative care is an important area of intervention in neurodegenerative diseases. The aim of this study is to understand the relationship between Palliative Care Needs and Caregiver Burden among persons diagnosed with neurodegenerative diseases.
Methods: A cross-sectional study design was adopted to explore the research problem. A prospective sample of 120 participants (60 Patient Caregiver dyads) of Motor Neurone Disease (MND) and Parkinson's disease (PD) were recruited for the study based on inclusion and exclusion criteria from a quaternary referral care centre for neurology in south India. Patients seeking care were recruited for the study consecutively. Palliative care outcome scale and Zarit Burden Interview scale were administered to understand the relationship.
Results: It was found that Palliative care outcomes score was positively correlated with caregiver burden (r = 0.597), showing that there is a bi-directional relationship between palliative care needs and caregiver burden.
Conclusion: Irrespective of the differences in illness characteristics, the study found that palliative care needs are high among chronic neurological conditions which requires a noncategorical psychosocial approach in ensuring care.
Objectives: This study aimed to identify gaps in palliative care (PC) provision across the National Cancer Grid (NCG) centres in India.
Methods: We performed a cross-sectional validated web-based survey on 102 NCG cancer centres (Nov ’17 to April ’18). The survey questionnaire had seven sections collecting data relating to the capacity to provide cancer care and PC, drug availability for pain and symptom control, education, advocacy, and quality assurance activities for PC.
Results: Eighty-nine NCG centres responded for this study—72.5% of centres had doctors with generalist PC training, whereas 34.1% of centres had full-time PC physicians; 53.8% had nurses with 6 weeks of PC training; 68.1% of the centres have an outpatient PC and 66.3% have the facility to provide inpatient PC; 38.5% of centres offer home-based PC services; 44% of the centres make a hospice referral and 68.1% of the centres offer concurrent cancer therapy alongside PC. Among the centres, 84.3% have a licence to procure, store and dispense opioids, but only 77.5% have an uninterrupted supply of oral morphine for patients; 61.5% centres have no dedicated funds for PC, 23.1% centres have no support from hospital administration, staff shortage—69.2% have no social workers, 60.4% have no counsellors and 76.9% have no volunteers. Although end-of-life care is recognised, there is a lack of institutional policy. Very few centres take part in quality control measures.
Conclusions: The majority of the NCG centres have the facilities to provide PC but suffer from poor implementation of existing policies, funding and human resources.
Background: Renal failure is a chronic disease that can seriously affect quality of life (QOL). Health-Related QOL represents the physical, psychological, and social domains of health that are influenced by a person's experience, beliefs, expectations, and perceptions. The aim of this study is to explore QOL of Stage 5 chronic kidney disease (CKD) patients on maintenance hemodialysis (MHD) in South India.
Materials and Methods: This was a cross-sectional observational study conducted among patients with CKD undergoing MHD at 11 major centers in South India. Demographic data were collected using a predesigned questionnaire. QOL index was measured using the 26-item WHOQOL-BREF questionnaire, and statistical analysis was carried out using the SPSS version 24 (Academy of Medical Sciences, Kannur, Kerala, India).
Results: Five hundred and three patients undergoing MHD were enrolled, and the following QOL scores were recorded: social relationship (51.65 ± 21.03), environmental (46.91 ± 19.29), psychological (41.07 ± 20.30), and physical health (40.17 ± 17.05). QOL of patients declined with aging in all four domains. Being male, younger, educated, and unmarried appeared to have a favorable effect on several aspects of patients' QOL.
Conclusion: The evaluation of QOL in CKD patients undergoing hemodialysis showed that it was relatively compromised. Because the patients had a chronic, progressive irreversible disease, the most affected was physical domain. Age, education, employment, and marital status were found to affect one or more domains of QOL. Age and education are significant independent variables; as the age increases, QOL decreases, and higher the education better the QOL.
Aim: This audit was done to analyze the factors influencing the use of strong opioids in cancer patients receiving comprehensive palliative care from a tertiary institute.
Materials and Methods: Case records of patients registered for palliative care at our center in 3 months were retrospectively reviewed and followed up throughout the course of their illness. Demographic factors, prior treatments, social support system, analgesic use at registration, and use of radiation and adjuvant analgesics were recorded. Strong opioid use and their time of initiation were evaluated, and multivariate analysis was used to identify the factors correlating with the above.
Results: After registration, strong opioids were initiated in 16% of the patients. It was observed that patients younger than 55 years and those with visceral metastases and history of use of weak opioids at the time of registration had a higher probability of being started on strong opioids. Factors associated with a significantly longer strong opioid-free interval were having spouse as primary caregiver, presence of skeletal metastases, use of palliative radiotherapy, and low socioeconomic status.
Conclusion: It is certain that the use of strong opioids for adequate analgesia is a necessity for palliative-care patients. However, optimal utilization of adjunctive analgesic modalities, coupled with good supportive care, can minimize the requirement and duration of strong opioid use, especially in developing countries with limited access to specialist palliative care.
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.
BACKGROUND: We report our experience with Indian patients who received palliative chemotherapy with/without cetuximab for recurrent/metastatic squamous cell carcinoma of the head and neck (R/M SCCHN).
METHODS: Data from 229 R/M SCCHN patients treated with cetuximab and chemotherapy (n = 140) or chemotherapy alone (n = 89) were retrospectively analyzed for response rate (RR), progression-free survival (PFS), overall survival (OS), and safety.
RESULTS: Patients receiving cetuximab with chemotherapy demonstrated significant increase in RR (77.1% vs 44.9%, P = .0001), PFS (8.1 vs 6.1 months, P = .039), and OS (11.8 vs 8.0 months, P = .002) compared with patients receiving chemotherapy alone. Continuing cetuximab and changing chemotherapy combination (second line and beyond) in fit patients doubled OS (13.5 vs 6.1 months, P = .001). Adverse effects, except skin reactions (more in the cetuximab with chemotherapy group; P = .001), were similar in both groups.
CONCLUSION: Adding cetuximab to chemotherapy improved ORR, PFS, and OS in Indian R/M SCCHN patients, and cetuximab was well tolerated.
Background: People in low- and middle-income countries with serious health problems rarely have access to palliative care. Promising models of palliative care delivery have emerged in India despite widespread poverty and poor health care infrastructure.
Objective: To explore structural and philosophical aspects of palliative care delivery in a low-resource setting.
Design: One author spent six months as a participant observer at Pallium India (PI), a nongovernmental organization recognized for leadership in palliative care delivery in Kerala, India. We collected administrative data, conducted semistructured interviews with key stakeholders, and observed clinical encounters and other organization-led events.
Results: We performed 73 interviews with patients, families, clinicians, staff, and volunteers, and observed 180 patient encounters. The majority of palliative care patients did not have cancer. Many had chronic diseases that were not immediately life threatening. Services addressed a broad range of patients' medical, psychological, social, and/or financial needs. PI's care delivery maximizes accessibility.
Conclusions: PI employs an expansive definition of palliative care and adapts services to respond to patients' diverse needs. This accessible, people-centered care is necessary in low-resource settings to alleviate multifaceted suffering caused by gaps in the health care system, poor social support, and poverty.
Under-five (U-5) mortality is a major public health problem in lower-middle income countries. The aim of this study is to examine the associations between maternal education and mortality of children below 5 years age in Indian context. We have used bi-variate and multivariate logistic regressions to assess the associations. Our study reveals that increasing level of education among women and in association with socio-economic and demographic factors significantly reduces the incidence of U-5 mortality. The findings suggest that increasing opportunities for female education and addressing socio-economic and demographic vulnerabilities could be effective strategies to combat the incidence of U-5 mortality.
Asbestos-related diseases (ARDs) are incurable but entirely preventable. Due to India's continuing use of asbestos, ARD patients will increase to a high number in the next three to four decades. This will increase the burden on palliative care system which is in nascent stage presently. Palliative care is the mainstay of the management of ARDs. Unfortunately, the burden on palliative care is likely to increase due to multiple factors contributed by India's demographic and economic changes. In the near future, there will be at least 12.5 million ARD patients and 1.25 million asbestos-related cancer patients worldwide, and half of these will be in India. It is high time to introspect about our ability to engage with this future problem. The paper also discusses the organization of this future problem of ARDs and possible action points toward future access to palliative care for ARD patients.
The debate about euthanasia continues worldwide, with nurses’ attitudes becoming increasingly more important. The aim of this study is to investigate gender differences among nurses’ perceptions of attitudes toward euthanasia. A nonprobability quantitative, cross-sectional design was carried out among nurses working at a tertiary care center. Data were collected through self-reported questionnaires at their work place. Significant differences were found between men and women to the items such as “Fear of death shows differences due to religious beliefs” ( 2 = 10.550, p < 0.05), “If patient wants euthanasia, nutrition support should be stopped” ( 2 = 12.209, p < 0.05), “CPR should not be applied in case of sudden respiration and heart stop” ( 2 = 9.591, p < 0.05), and “burden for relatives to take care of a patient who is in terminal period and who will die” ( 2 = 9.069, p < 0.05). The present study depicts that gender plays an important role in euthanasia; hence, the researchers strongly suggest that there is an urgent need to draft uniform guidelines after wide consultation with all the stake holders regarding nurses’ role in taking care of patients who request euthanasia, to face these situations effectively and competently within professional boundaries.