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2.
Indian J Palliat Care ; 29(4): 368-374, 2023.
Article in English | MEDLINE | ID: mdl-38058487

ABSTRACT

General practitioners play a vital role in providing community-based palliative care to patients reaching end of life. In order for GPs to upgrade their skills at end-of-life care delivery, it is imperative that training programs be aligned to their learning needs and preferences. A narrative review was conducted using the electronic databases PubMed, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science, and Cochrane from 01/01/1990 to 31/05/2021. 23 articles (of 10037 searched) were included for the review. Following themes were generated: Value attributed to end-of-life care learning, experience and reflection as a departure point for learning, learning as embedded in the clinical context; autonomy to decide upon their learning needs and learning preferences, learning as a transformative process; and learning as embedded in social interaction and interpretation. Training programs that are aligned to the preferences of GPs will encourage a larger clientele of GPs to access them.

3.
Qual Life Res ; 32(12): 3495-3506, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37530959

ABSTRACT

PURPOSE: To determine if video-based educational intervention compared to the standard verbal guidelines, provided to caregivers on home-based palliative care could enhance the quality of life (QoL) in advanced head and neck cancer (HNC) patients. METHODS: The study employed a prospective, two-arm parallel-group, randomized controlled trial design. Investigators prepared a real-world demonstrational video of ten minutes duration regarding home-based care for family caregivers, with voice-over in Odia language (Eastern India). The contents of the video addressed the management of common problems in palliative care among HNC patients. This study included 180 participants, 90 patient & caregiver dyads randomized to interventional (video-based education) or control (verbal instruction) groups. Patients' QoL was measured at baseline and 3 weeks follow-up using EORTC QLQ C30. Data were analyzed descriptively, and the Chi-square, Mann-Whitney U, T-test, spearman correlation, and multiple hierarchical regression analyses were employed for statistical analysis, with a significance level of p < 0.05. RESULTS: Seventy participant dyads completed the planned two assessments: baseline and at the end of 3rd week (Intervention = 37; Control = 33). The intervention group showed a significant improvement in the patient's health-related QoL, physical, emotional, and social functioning. Symptom burden reduction was observed for pain, nausea, and fatigue. A significant increase in the change in QoL with the video-based education group (VBE) compared to the verbal instruction (VI) group after adjusting for age, gender, physical functioning, and pain symptomology (adjusted R2 = 0.402) was noted. CONCLUSION: VBE intervention using smart-phone may offer caregivers a viable means of enhancing self-management while improving patients' QoL within the socio-cultural challenges for home-based palliative care in India. Further research on training caregivers using digital interventions and home-based visits is recommended. TRIAL REGISTRATION NUMBER: CTRI/2021/06/034473 [Registered on: 30/06/2021].


Subject(s)
Head and Neck Neoplasms , Palliative Care , Humans , Quality of Life/psychology , Caregivers/psychology , Prospective Studies , Head and Neck Neoplasms/therapy , Pain
4.
J Cancer Educ ; 38(5): 1440-1458, 2023 10.
Article in English | MEDLINE | ID: mdl-37648949

ABSTRACT

General practitioners (GPs) are critical in providing primary palliative care in the community. Apprehensions about managing a dying person at home, difficulties in goals of care discussion, limited resources and lack of palliative care education often hinder end-of-life care provision in the community. This review focused on the end-of-life care training programs accessed by GPs and sought to understand if the training programs' content and mode of delivery aligned with their preferred needs. MEDLINE, EMBASE, CINAHL, and PsycINFO were searched to identify articles published in English between 01 January 1990 and 30 September 2022. Additionally, searches were conducted using SCOPUS, the Web of Science, and the Cochrane database using free texts. The reviewers screened the titles, abstracts, and full text to identify eligible studies and extracted textual data to analyse and generate themes. Out of 5532 citations initially accessed, 17 studies were included in the review. Six themes were generated: knowledge translation, skill development, a change in attitude, self-efficacy, satisfaction, and patient outcomes. The GPs' end-of-life care knowledge, skills, attitude, self-efficacy, and patient outcomes were better when their training had a combination of small-group interactive workshops, trigger case-based reflective learning, mentor-facilitated experiential learning, web-based modules, and peer learning. The synthesis of review findings supports blended learning as a training approach for general the practitioners' end-of-life care education as it facilitates learning and patient outcomes.


Subject(s)
General Practitioners , Terminal Care , Humans , Learning , Problem-Based Learning , Knowledge
5.
J Family Med Prim Care ; 11(9): 4913-4918, 2022 Sep.
Article in English | MEDLINE | ID: mdl-36505579

ABSTRACT

The rising trend in the ageing population alongside social, cultural, and economic changes poses a major threat to the health care system in the country. Elderly population have dynamic and complex health care needs, are debilitated by the progressive chronic life-threatening diseases, and live a compromised quality of life. Palliative care, with its multifaceted approach, can provide respite to the elderly population. A decentralized approach in which palliative care is provided by the local community will ensure seamless continuity of care and care at an affordable cost. General practitioners or family physicians play a vital role in delivering primary palliative care to the elderly population in the community. An integrating primary palliative-geriatric care model will ensure that care is provided in alignment with the patients' and their families' wishes along the trajectory of the life-threatening illness and at the patients' preferred place. However, delivering primary palliative care in the community can be riddled with challenges at various levels, such as identification of patients in need of palliative care, interpersonal communication, addressing patients' and caregivers' needs, clarity in roles and responsibilities between general practitioner and family physicians and specialist palliative care teams, coordination of services with specialists, and lack of standard guidelines for palliative care referral. Various geriatric-palliative care models have been tested over the years, such as delivering palliative and end-of-life care for disease-specific conditions at specified care settings (home or hospice) and provision of care by different specialist palliative care teams and general practitioners or family physicians. Akin to the aforementioned models, the National Health Program in the country envisages to strengthen the integration of geriatric and palliative care. The integrated geriatric-palliative care model will ensure continuity of care, equitable distribution of service, impeccable inter-sectoral collaboration and care at an affordable cost.

6.
Indian J Palliat Care ; 28(3): 314-320, 2022.
Article in English | MEDLINE | ID: mdl-36072243

ABSTRACT

Objectives: Patients with chronic life-limiting or advanced respiratory diseases often suffer from high symptom burden, requiring palliative care to alleviate symptoms, improve quality of life and restore dignity. The present study explored the perception of respiratory physicians and their current practice of integrating palliative care for adult patients with chronic advanced respiratory diseases. Materials and Methods: An exploratory survey method using Google survey forms and SurveyMonkey was emailed to respiratory physicians between December 2020 and May 2021. Results: One hundred and seventy-two respiratory physicians responded to the survey. The majority of respiratory physicians (n = 153; 88.9%) thought that early integration of palliative care early was beneficial. They did not feel referring to palliative care would result in loss of control on patient care (n = 107; 62.21%) and 66 (38.37%) strongly disagreed that the referral would result in a loss of hope in patients. Further exploration into the training needs of respiratory physicians revealed that 121 (70.35%) felt the need for training in end-of-life care. Conclusion: Respiratory physicians in our study had an inclination toward palliative care integration into their routine clinical practice. A majority of them expressed the need to enhance their skills in palliative care. Therefore, concerted efforts at integration and a mutual exchange of knowledge between respiratory physicians and palliative care physicians will ensure that patients with advanced respiratory diseases are provided high-quality palliative care.

7.
Indian J Palliat Care ; 28(3): 229-235, 2022.
Article in English | MEDLINE | ID: mdl-36072244

ABSTRACT

The rising trend of chronic life-threatening illnesses is accompanied by an exponential increase in serious health-related suffering. Palliative care is known to ameliorate physical and psychosocial suffering and restore quality of life. However, the contemporary challenges of palliative care delivery, such as changing demographics, social isolation, inequity in service delivery, and professionalisation of dying, have prompted many to adopt a public health approach to palliative care delivery. A more decentralised approach in which palliative care is integrated into primary care will ensure that the care is available locally to those who need it and at a cost that they can afford. General practitioners (GPs) play a pivotal role in providing primary palliative care in the community. They ensure that care is provided in alignment with patients' and their families' wishes along the trajectory of the life-threatening illness and at the patient's preferred place. GPs use an interdisciplinary approach by collaborating with specialist palliative care teams and other healthcare professionals. However, they face challenges in providing end-of-life care in the community, which include identification of patients in need of palliative care, interpersonal communication, addressing patients' and caregivers' needs, clarity in roles and responsibilities between GPs and specialist palliative care teams, coordination of service with specialists and lack of confidence in providing palliative care in view of deficiencies in knowledge and skills in palliative care. Multiple training formats and learning styles for GPs in end-of-life care have been explored across studies. The research has yielded mixed results in terms of physician performance and patient outcomes. This calls for more research on GPs' views on end-of-life care learning preferences, as this might inform policy and practice and facilitate future training programs in end-of-life care.

8.
BMC Palliat Care ; 21(1): 162, 2022 Sep 21.
Article in English | MEDLINE | ID: mdl-36127706

ABSTRACT

BACKGROUND: General practitioners (GPs) play a pivotal role in providing end-of-life care in the community. Although they value end-of-life care, they have apprehensions about providing care in view of the limitations in knowledge and skills in end-of-life care. This review aimed to explore, synthesise, and analyse the views of general practitioners on end-of-life care learning preferences. METHODS: MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science, and Cochrane were searched for literature on the views of general practitioners on end-of-life care learning preferences from 01/01/1990 to 31/05/2021. Methodological quality was reported. RESULTS: Of the 10,037 articles identified, 23 were included for the review. Five themes developed from the review. The desire to provide palliative care, as well as self-actualisation needs, relevance to practice, a sense of responsibility, and a therapeutic bond, motivates general practitioners to learn end-of-life care. Some of the learning needs expressed were pain and symptom management, communication skills, and addressing caregiver needs. Experiential learning and pragmatist learning styles were preferred learning styles. They perceived the need for an amicable learning environment in which they could freely express their deficiencies. The review also identified barriers to learning, challenges at personal and professional level, feelings of disempowerment, and conflicts in care. CONCLUSION: GPs' preference for learning about end-of-life care was influenced by the value attributed to learning, context and content, as well as preference for learning styles and the availability of resources. Thus, future trainings must be in alignment with the GPs' learning preferences.


Subject(s)
General Practitioners , Terminal Care , Education, Medical, Continuing , Humans , Learning , Palliative Care
9.
Indian J Palliat Care ; 27(1): 172-175, 2021.
Article in English | MEDLINE | ID: mdl-34035635

ABSTRACT

Life-threatening bleeding although uncommon in palliative care is associated with significant distress among patients and family. The current guidelines emphasize the need for identification of a patient with early signs of bleeding and providing assurance and comfort care to patients and family in case of an event. There is very little known about the role of high dose of tranexamic acid, a lysine analog in controlling the bleeding irrespective of the underlying pathophysiology of the bleed. Tranexamic acid is known to competitively block the lysine-binding site of plasminogen and thus inhibit the activation of plasminogen to plasmin and at high-concentration tranexamic acid noncompetitively blocks plasmin, thus inhibiting the dissolution and degradation of fibrin clots by plasmin. Here, we discuss two case studies of patients who presented with massive bleed from the tumor site. With a high dose of continuous intravenous infusion of tranexamic acid, there was a complete arrest of the bleed with a reduction in the requirement for blood transfusion.

10.
Indian J Palliat Care ; 26(Suppl 1): S40-S44, 2020 Jun.
Article in English | MEDLINE | ID: mdl-33088085

ABSTRACT

INTRODUCTION: Novel coronavirus disease 2019 (COVID 19) has usurped human peace and mobility. The confinement of the population and the rising epidemic has disrupted the routine care for non-COVID-19 patients. Telehealth is a growing field, and its application in palliative care is seen as a solution to serve the population in this difficult crisis. METHODOLOGY: A exploratory survey was designed to assess the changes in the hospital-based practice of palliative care in the COVID-19 pandemic and patient/caregiver's perception about the provision of telehealth services to palliative care patients of a tertiary care cancer hospital of eastern India. RESULTS: There was a dramatic reduction in the outpatient clinic footfalls by 51% with teleconsultation. Although there was no change in the number of emergency visits, the inpatient admissions reduced by 44%. Nearly 82% of patient/caregivers gave a positive feedback about telemedicine care provided by the department and mentioned that the service provided them with support and connectedness. Almost 64% of the patients and caregivers reported that the service helped allay the fear and reassured them that there was a someone to support them. As high as 76% of the participants felt that they would prefer teleconsultation in future and were ready to pay for teleconsultations if charges were to be applied in the future. CONCLUSION: Telemedicine is an important tool and an essential service to care for palliative care patients in the community especially when the patient and health-care professionals are separated by a pandemic or natural disaster.

11.
J Family Med Prim Care ; 9(7): 3169-3175, 2020 Jul.
Article in English | MEDLINE | ID: mdl-33102264

ABSTRACT

Novel Coronavirus (COVID 19) has usurped human peace and mobility. Since December 2019, the virus has claimed the lives of 87,816 people across the globe as of April 9, 2020 with India reporting a high case fatality of 3.4%. Among the vulnerable population, elderly people, and patients with comorbidities such as diabetes, chronic life-threatening illnesses, such as COPD and advanced malignancies are susceptible to COVID-19 infection and may have poor clinical outcomes. Considering the imbalance in demand and supply of healthcare resources, initiating palliative care will be essential to alleviate the suffering of such patients. The current paper deliberates on the following aspects of palliative care delivery in the community; the need for palliative care in a pandemic crisis, the role of telemedicine in palliative care delivery in the community, the vital role of a family physician in providing primary palliative care in the community and a "wholistic" community palliative care package to serve the needy in the community.

12.
J Family Med Prim Care ; 8(9): 2877-2881, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31681659

ABSTRACT

INTRODUCTION: Patients with advanced cancer often suffer from complex symptoms necessitating constant supervision and management. Primary care/family physicians act as an important bridge between the patients in the community and the specialists in the hospital ensuring continuity of care. MATERIALS AND METHODS: The present paper explored the facilitators and challenges in providing home-based palliative care as perceived by the primary care/family physicians (PCP/FP). RESULTS: 62 physicians reported that they were involved in palliative management of at least one cancer patient in the previous year. A significant number of GPs (34%) lacked confidence in providing this care because of patient complexity, inadequate training and insufficient resources. Other barriers included poor communication from specialists and treating teams. Factors facilitating provision of home-based palliative care included their willingness to help palliative care patients, their inclination to train in palliative care and enthusiasm to refer to guidelines while caring for patients. CONCLUSION: It is explicit in the paper that resources with respect to information sharing and communication, technical support and training are essential to empower the PCP/FP in providing community-based palliative care.

13.
J Family Med Prim Care ; 8(8): 2563-2567, 2019 Aug.
Article in English | MEDLINE | ID: mdl-31548932

ABSTRACT

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.

14.
Ecancermedicalscience ; 13: 913, 2019.
Article in English | MEDLINE | ID: mdl-31123496

ABSTRACT

BACKGROUND: Medical decisions made by oncology clinicians have serious implications, even when made collaboratively with the patient. Clinicians often use the Eastern Clinical Oncology Group (ECOG) performance status (PS) scores to help them make treatment-related decisions. METHODS: The current study explores the variability of the ECOG score when applied to 12 predetermined specially designed clinical case vignettes presented to a group of oncology clinicians (n = 72). The quantitative analysis included evaluation of variability of ECOG PS scores and exploration of rater and patient-related factors which may influence the final ECOG rating. In-depth interviews were conducted with oncology clinicians to ascertain factors that they felt were important while making treatment-related decisions. Basic and global themes were generated following qualitative data analysis. RESULTS: Quantitative results showed that there was poor agreement in ECOG rating between raters. Overall concordance with the gold standard rating ranged between 19.4% and 56.9% for the vignettes. Moreover, patients deemed to have socially desirable qualities (p < 0.004) were rated to have better PS and women patients (p < 0.004) to have worse PS. Clinicians having international work experience had increased concordance with ECOG PS rating. Qualitative results showed that 'perceived socio-economic background of the patient', 'age of the patient', 'patient's and family's preferences' and 'past treatment response' were the major themes highlighted by respondents that influenced the treatment-related decisions made by clinicians. CONCLUSION: There is considerable variability in ECOG PS determined by clinicians. Decision-making in oncology is complex, multifactorial and is influenced by rater and patient-related factors.

15.
J Family Med Prim Care ; 7(2): 291-302, 2018.
Article in English | MEDLINE | ID: mdl-30090767

ABSTRACT

PURPOSE: This joint position statement, by the Indian Association of Palliative Care (IAPC) and Academy of Family Physicians of India (AFPI), proposes to address gaps in palliative care provision in the country by developing a community-based palliative care model that will empower primary care physicians to provide basic palliative care. EVIDENCE: India ranks very poorly, 67th of 80 countries in the quality of death index. Two-thirds of patients who die need palliative care and many such patients spend the last hours of life in the Intensive care unit. The Indian National Health Policy (NHP) 2017 and other international bodies endorse palliative care as an essential health-care service component. NHP 2017 also recommends development of distance and continuing education options for general practitioners to upgrade their skills to provide timely interventions and avoid unnecessary referrals. METHODS: A taskforce was formed with Indian and International expertise in palliative care and family medicine to develop this paper including an open conference at the IAPC conference 2017, agreement of a formal liaison between IAPC and AFPI and wide consultation leading to the development of this position paper aimed at supporting integration, networking, and joint working between palliative care specialists and generalists. The WHO model of taking a public health approach to palliative care was used as a framework for potential developments; policy support, education and training, service development, and availability of appropriate medicines. RECOMMENDATIONS: This taskforce recommends the following (1) Palliative care should be integrated into all levels of care including primary care with clear referral pathways, networking between palliative care specialist centers and family medicine physicians and generalists in community settings, to support education and clinical services. (2) Implement the recommendations of NHP 2017 to develop services and training programs for upskilling of primary care doctors in public and private sector. (3) Include palliative care as a mandatory component in the undergraduate (MBBS) and postgraduate curriculum of family physicians. (4) Improve access to necessary medications in urban and rural areas. (5) Provide relevant in-service training and support for palliative care to all levels of service providers including primary care and community staff. (6) Generate public awareness about palliative care and empower the community to identify those with chronic disease and provide support for those choosing to die at home.

16.
Indian J Palliat Care ; 23(4): 361-362, 2017.
Article in English | MEDLINE | ID: mdl-29123338
17.
Indian J Palliat Care ; 23(4): 409-412, 2017.
Article in English | MEDLINE | ID: mdl-29123347

ABSTRACT

INTRODUCTION: Patients with advanced gynecological malignancies often present with a high burden of symptoms endangering their quality of life. OBJECTIVE: This study aims at assessing the symptom prevalence in patients with gynecological malignancies referred to palliative care and identify factors that predict high symptom burden. METHODOLOGY: This was a retrospective data analysis of gynecological cancer patients referred to palliative medicine department. We reviewed the electronic medical records of patients to obtain data on (1) demography (age, residence); (2) clinical information (diagnosis, stage of cancer, the reason for referral to palliative care service, symptoms, and performance status). The data were reported as frequency and percentages and analysis performed using Chi-square. P < 0.05 was considered to be statistically significant. RESULTS: We analyzed 196 patients with advanced gynecological cancers presenting to palliative medicine department. The pain was the most common symptoms (70.04%) followed by anorexia (34.13%), constipation (28.57%), and fatigue (28.06%). There was a trend toward higher symptom burden in patients younger than 60 years. Among cancer diagnosis, patients with cervical cancer had a higher prevalence of pain (76.66%) followed by ovarian (70.79%) and endometrium (60.97%). Anorexia was the next commonly prevalent symptoms in ovarian (40.45%), endometrium (29.27%), and cervical cancer (28.33%). CONCLUSION: Considering the high symptom burden among advanced gynecological cancer patients it becomes imperative that patients receive adequate screening for symptoms and appropriate palliative care referral be offered to ensure overall well-being of the patients.

18.
Indian J Palliat Care ; 23(3): 261-267, 2017.
Article in English | MEDLINE | ID: mdl-28827928

ABSTRACT

PURPOSE: Early palliative care is beneficial in advanced lung cancer patients. We aimed to assess the feasibility of introducing early palliative care in ambulatory advanced lung cancer patients in an Indian tertiary cancer center. METHODOLOGY: In a longitudinal, single-arm, and single-center study, fifty patients were recruited and followed up every 3-4 weeks for 6 months, measuring the symptom burden using Edmonton Symptom Assessment Scale (ESAS) and quality of life (QoL) with European Organization for Research and Treatment of Cancer-QoL tools. The primary end point of feasibility was that at least 60% of the patients should complete 50% of the planned palliative care visits and over 50% of the patients should complete QoL questionnaires. Analysis was done using Statistical Package for the Social Sciences version 20. RESULTS: Twenty-four of fifty patients (48%) completed the planned follow-up visits. All patients completed the questionnaires at baseline and 31 (62%) at their follow-up visits. The patients' main reasons for not following up in the hospital palliative care clinic were logistics and fatigue. Tiredness, pain, and appetite loss were the highest rated symptoms at baseline (ESAS scores 3, 2.2, and 2.1, respectively). Improvement in pain and anxiety scores at follow-up visits 1 and 2 was significant (P < 0.05). Scores on QoL functioning scales improved during the follow-up period. CONCLUSIONS: We did not meet the feasibility criteria for the introduction of early palliative care in our advanced lung cancer patients in a resource-limited country.

19.
Indian J Med Paediatr Oncol ; 37(3): 202-5, 2016.
Article in English | MEDLINE | ID: mdl-27688616

ABSTRACT

Patients with advanced malignancy often experience symptoms of disease and treatment that contribute to distress and diminish their quality of life. Most of these patients present to the emergency department thus raising its importance in providing such care especially at the end of life situation. An approach that is aimed at controlling these symptoms, whether or not undergoing curative therapy, is a key feature of high-quality patient-centered care. This paper explores the potential role of palliative medicine in the emergency room and how early integration with emergency care can help improve the quality of life of patients and thus achieve better outcomes.

20.
Indian J Palliat Care ; 22(1): 94-6, 2016.
Article in English | MEDLINE | ID: mdl-26962287

ABSTRACT

Vagal sensory neuropathy or vagal hypersensitivity has been implicated in the pathophysiology of chronic cough. Earlier reports have shown gabapentin to be effective in sensory laryngeal neuropathy and symptom conditions that have a proven neural origin. We present a case report of a patient with chronic refractory cough due to a soft tissue mass in the lung that caused compression of the mediastinal structures. The patient was successfully treated with gabapentin with reduction in the cough intensity, duration, and frequency.

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