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.
Cet ouvrage regroupe les contributions produites lors d'un congrès international à Florence en Italie. La première partie, dédiée à une approche historique générale de la fin de vie et de l'euthanasie, introduit le sujet avant de se focaliser sur les aspects philosophiques et éthiques. La deuxième partie décrit, pays par pays, le statut des législations en vigueur, les projets de réforme et les particularités de chaque système législatif. La troisième partie dépeint des études de cas pour illustrer l'application des législations relatives à la fin de vie. Des cas récents, comme Lambert en France, Conway en Angleterre et Fabiano Antoniani en Italie sont détaillés. La quatrième partie traite de la responsabilité pénale de l'équipe médicale et les questions générales de droit pénal relatives à la fin de vie dans les pays étudiés. Enfin, la dernière partie met en évidence les outils législatifs liés à la protection législative des adultes en France et en Allemagne.
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.
Background: The World Health Organization estimates that around 6 million people need palliative care in India but not even 1% of the patients have access to it.
Objective: To find the prevalence of knowledge on palliative care and compare the effectiveness of different methods of health education on attitude regarding palliative care among urban college students in southern India.
Subjects: A pre-post intervention study was conducted in three different arts, science and commerce colleges in urban Pondicherry in August 2017.
Methods: Data regarding attitude change towards palliative care by three different modes of intervention in the three colleges: health talk (Group A), health talk with video (Group B) and health talk and interaction with a patient's caregiver (Group C) - before and after intervention - were collected using a predesigned pretested structured questionnaire.
Results: Among the 65, 75 and 67 participants in Groups A, B and C, respectively - the majority belonged to urban nuclear families; the mean age was 19.5 (0.9) years and Group C had only female students. The prevalence of knowledge about palliative care was found to be 9.2%. There was a difference in attitude scores among the three groups (p = 0.02) with Group C having the highest change of a score with a median of 2 (-1,5). Conclusion: Awareness about palliative care is very low among non-medical undergraduate college students of urban Pondicherry. The best method of health education in changing the attitude towards palliative care was interaction with patient's caregiver.
Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers' experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage. In-depth interviews were conducted with seven bereaved caregivers of individuals with MND from a national tertiary referral care center for neuropsychiatry in South India. Interviews were conducted either in person or by telephone. Thematic analysis was done using the constant comparative method. Major themes derived from the interviews were: (1) Transition from person to patient, (2) support, (3) death, and (4) impact on the caregivers. Mapping of themes identified "Support received during advanced stages" as the central theme influencing all other themes. The need for a care manager seems evident and is a role that can be effectively fulfilled by the care teams' social workers.
Background: When a mother loses a baby after the period of viability, there is no way to fathom her grief, neither any words, nor an explanation. It is an unexpected event. Stillbirth presents a situation where the early activation of the grief process primarily in mother is exacerbated by the circumstances surrounding the loss. It thus becomes imperative for the healthcare providers to evaluate the significance of parent's perception on the loss and the factors contributing to it before the initiation of therapy.
Objective: To evaluate the psychosocial impact of stillbirth among mothers and its contributing factors.
Materials and Methods: A WHO-funded prospective study was conducted in VMMC and Safdarjung Hospital from September 2015 to August 2016 on all women who gave birth to a stillborn baby, using a questionnaire based on EPDS, after taking their written informed consent. Data were entered on the predesigned proforma and analyzed after applying Chi-square test, keeping a null hypothesis value of 15% for all the variables.
Results: Out of the 709 women who delivered stillborn babies, 645 respondents, who willingly consented to participate, were included in the study. There was a significant relationship between psychosocial impact after perinatal loss and support from caregiver and family.
Conclusion: Mothers with stillborn fetuses should be screened for psychosocial impact and offered support when needed. Appropriate counseling by healthcare providers and continued psychosocial and emotional support by family members must be provided.
Most people avoid talking about death with children even when required, as they are unsure at what age children start understanding the concept of death. Although this question has been researched in the west, it has not been answered in the Indian context. Therefore, this study was conducted in India with 25 children (14 females, 11 males; 3-5 years), using play and joint story construction method, along with semistructured interviews. Results indicated that majority of the children understood that everyone has to die, including significant people like their own parents (i.e., universality) and also, many children understood that death is final (i.e., irreversibility). However, only few children understood that all cognitive/behavioral functions cease at death (i.e., nonfunctionality). In conclusion, only a small proportion of preschoolers seems to have had a mature concept of death.
Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention?
Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7).
Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability.
Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.
Background: Medical discipline in India focuses on cure rather than comfort care. Palliative care is concerned with improving quality of life and relieving sufferings in patients with advanced incurable terminal diseases. Palliative care in India is still in infancy stage due to lack of knowledge, attitude and skills among health care providers. The reason being lack of training in under graduate as well as postgraduate teaching curriculum and lack of sensitization among policy makers.
Aims and Objectives: To assess the awareness, interest, practices and knowledge in palliative care among medical professionals working in a tertiary care hospital.
Materials and Methods: All participants were mailed proforma to be filled in a fixed format including details of their qualification, demographic data, their field of work, their training in palliative care and multiple choice questions regarding awareness interest, practices and knowledge of palliative care.
Results: Out of 186 respondents, 56% had not received any basic training in palliative care. 81% wanted palliative care education to be included in undergraduate curriculum. Poor program was identified as the most common barrier in learning palliative care. 77% respondents had no idea about home based palliative care services. 50.8% patients dies in hospital in their terminal stage. 88% were interested in learning safe opioid practices. Although 89.8% were aware of the need of palliative care in metastatic cancer but less than 50% were aware of the fact that palliative care is also required in MDR-TB and mental illness.
Conclusion: This study reflects data of an apex cancer institute of the country. The result of awareness is not very encouraging despite a dedicated palliative care department. So, we can assume what will be the palliative care status in other parts of India where there is no palliative care at all.
Recommendation: We strongly recommends that palliative care teaching should be incorporated in undergraduate curriculum to sensitize the students from the beginning. Budding residents in their learning phase can play an important role by learning and providing palliative care as the first person to come into contact with the patients are residents. There is a strong need of spreading palliative care awareness all over the country.
Introduction: End of life care of terminally ill is a sensitive topic in our socio cultural ethos. In a country where Euthanasia policies are widely debated, dignified death is a desired form of death. Euthanasia literally means "good death". In India the debate still continues on practices related to euthanasia and its legalization until recently when the verdict on the passive euthanasia has been passed by the supreme court. In addition, lack of an effective palliative care system has led to complex situations towards the end of life. Globally, it is estimated that palliative care is needed in 40-60% of all deaths. However there is no training or facility to meet this demand.
Methodology: A focus group discussion (FGD) was carried out among 22 residents in a rural area of Tamilnadu to identify the social and cultural determinants of end of life care practices. A FGD guide was prepared and after an informed consent the study was undertaken. An in depth interview was carried out among a sub group of participants.
Results: The FGD and the IDI revealed several end of life practices in the rural areas such as Thalaikoothal, Feeding the ill with holy water and sand etc. The study also revealed the major determinants leading to such practices such as the social, and cultural beliefs in addition to economical and emotional factors.
Conclusion: Several factors determine the end of life decisions in a family ranging from economical to social and cultural factors. While we are examining these factors, it is important to strengthen the palliative care provision in the country by building capacity and integrating it in primary care.
With the ratification of the landmark United Nations Convention on Rights of Persons with Disabilities by India, it was imperative to revamp the mental health-care legislation, among other changes. Most notably, a presumption of mental capacity has been introduced, which means a paradigm shift in the client and provider relationship. The Mental Healthcare Act, 2017 empowers all persons to make advance directives (AD) and nominate representatives for shared decision-making. Psychiatric ADs (PADs) also seem to improve the information exchange between the care provider and the service user. PADs may also be used as a vehicle of consent to future treatments. While drafting the PAD, the drafter must also plan how such directed care would be financed. Insurance companies have not been mandated to comply with ADs. In the eventuality that the drafter's family refuse support for treatment specified in the PAD, the drafter would be left holding an unimplementable PAD. The AD saw its origins in the care of the terminally ill and decades later came to be utilized in mental health care. After nearly three decades of use in developed countries, evidence at best remains mixed or inconclusive. This review focuses on the AD from the Indian perspective.