Background Worldwide, many patients with cancer, are infrequently referred to palliative care or are referred late. Oncologists and haematologists may act as gatekeepers, and their views may facilitate or hinder referrals to palliative care. This review aimed to identify, explore and synthesise their views on referrals systematically. Methods Databases of MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science and Cochrane were searched for articles from 01/01/1990 to 31/12/2019. All studies were scored for their methodological rigour using Hawker’s tool. Findings were synthesised using Popay’s narrative synthesis method and interpreted using a critical realist lens and social exchange theory. Results Out of 9336 initial database citations, 23 studies were included for synthesis. Five themes were developed during synthesis. 1. Presuppositions of oncologists and haematologists about palliative care referral: Role conflict, abandonment, rupture of therapeutic alliance and loss of hope were some of the presuppositions that hindered palliative care referral. Negative emotions and perception of self-efficacy to manage palliative care need also hindered referral. 2. Power relationships and trust issues: Oncologists and haematologists preferred to gatekeep the referral process and wished to control and coordinate the care process. They had diminished trust in the competency of palliative care providers. 3. Making a palliative care referral: A daunting task: The stigma associated with palliative care, navigating illness and treatment associated factors, addressing patient and family attitudes, and overcoming organisational challenges made referral a daunting task. Lack of referral criteria and limited palliative care resources made the referral process challenging. 4. Cost-benefit of palliative care referral: Pain and symptom management and psychosocial support were the perceived benefits, whereas inconsistencies in communication and curtailment of care were some of the costs associated with palliative care referral. 5. Strategies to facilitate palliative care referral: Developing an integrated model of care, renaming and augmenting palliative care resources were some of the strategies that could facilitate a referral. Conclusion Presuppositions, power relationships, trust issues and the challenges associated with the task of referrals hindered palliative care referral. Oncologists and haematologists appraised the cost-benefit of making a palliative care referral. They felt that an integrated model of care, changing the name of palliative care and augmenting palliative care resources might facilitate a referral.
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.
Background Although a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral. Methods Twenty-two paediatric oncologists and haematologists were purposively recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using the critical realist paradigm. Results Four themes were generated. 1) Oncologists expressed concern about the competency of palliative care teams. Palliative care often symbolised therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, and knowledge of oncology and paediatrics. 2) Making a palliative care referral was associated with stigma, navigating illness-related factors, negative family attitudes and limited resources, impeding palliative care referral. 3) There were benefits to palliative care referral, including symptom management and psychosocial support for patients. However, some could see interactions with the palliative care team as interference hindering future referrals. 4) Suggested strategies for developing an integrated palliative care model include evident collaboration between oncology and palliative care, early referral, rebranding palliative care as symptom control and an accessible, knowledgeable, and proactive palliative care team. Conclusion Presuppositions about palliative care, the task of making a referral, and its cost-benefits influenced referral behaviour. Early association with an efficient rebranded palliative care team might enhance integration.
PURPOSETo understand the preferences and attitudes of patients and family caregivers on disclosure of cancer diagnosis and prognosis in an Indian setting.METHODSOverall, 250 adult patients with cancer and 250 family caregivers attending the outpatients of a tertiary cancer hospital for the first time were recruited purposively. The mean ages of patients and caregivers were 49.9 years (range, 23-80 years) and 37.9 years (range, 19-67 years), respectively. Separately, they completed prevalidated, close-ended preference questions and were interviewed for open-ended attitude questions.RESULTSA total of 250 adult patients (response rate, 47.17% overall, 73.2% in men, and 26.8% in women) and 250 family caregivers (response rate, 40.65% overall, 84.0% in men, and 16.0% in women) participated. Significant differences were observed in the preference to full disclosure of the name of illness between patients (81.2%) and caregivers (34.0%) and with the expected length of survival between patients (72.8%) and caregivers (8.8%; P < .001). The patients felt that knowing a diagnosis and prognosis may help them be prepared, plan additional treatment, anticipate complications, and plan for future and family. The caregivers felt that patients knowing a diagnosis and prognosis may negatively affect the future course of illness and cause patients to experience stress, depression, loss of hope, and confidence.CONCLUSIONPatients with cancer preferred full disclosure of their diagnoses and prognoses, whereas the family caregivers preferred nondisclosure of the same to their patients. This novel information obtained through a large study with varied participants from different parts of the country will help formulate communication strategies for cancer care.
BackgroundHackathons are a popular trend in the technology domain and is considered a powerful tool to spur creativity and innovation. In a health hackathon, an interdisciplinary team of health, technology and management experts work collaboratively to solve a common problem. Health hackathon can be one of the quickest means to derive technology or process-based solutions to the challenges faced by clinicians.MethodsA 2-day hackathon: Hacking Cancer was conducted at a tertiary cancer centre in India to develop quick, cost-effective solutions in cancer care. Twelve oncology-related problem statements were explored. Undergraduate and postgraduate students of health and dental sciences, pharmacy, nursing, engineering and business management were the participants.OutcomesOne hundred and fifty-seven participants expressed interest, and 90 participated in the event. The participants did a time-bound exploration of 12 challenges in oncology elucidated problem statements. The oncology specialists mentored the participants during the hackathon. Seventeen teams presented their solutions. Judges reviewed the solutions and scored the teams based on feasibility, relevance and applicability. The top-scoring three projects were acute lymphoblastic leukaemia (ALL) better-improving adherence to treatment in ALL patients, Donate Life—application for voluntary blood donation and Lumiflex—a novel illuminated flexible abdominal retractor. They received seed funding to develop prototypes and implement their ideas.ConclusionHacking Cancer was an effective way of developing quick, cost-effective solutions to the common problems faced in cancer care. The pool of local participants developed solutions that were relevant and applicable to the practice setting. This one was the first oncology themed hackathon in the country.
Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS), multimedia messaging service (MMS) and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility.
Introduction:World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes.Methods:The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper.Results:Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014), and Kwon et al.(2013) showed that early specialist palliative care improves health care utilization, planned discharge, less emergency room visits, and better hospice utilization. Studies by Wiese et al. (2013), Hui et al. (2014) and Temel et al. (2010) showed that early specialist palliative care improves end-of-life care outcomes. Study by Rugno et al. (2014) showed that early specialist palliative care improves health-related communication. Studies by Wallen et al. (2012) and Zimmermann et al. (2014) shows early specialist palliative care improves patient and family satisfaction. There is a lack of robust evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies have demonstrated few negative outcomes of early specialist palliative care intervention.Conclusions:In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-l...
Purpose:Quality assurance data worldwide suggests that the current healthcare system is providing inadequate care for the dying. Current health care education focuses entirely on cure and care is almost compromised or nonexistent in end-of-life settings. The purpose of this study was to determine palliative care awareness among Indian undergraduate health care students and assess the need for incorporating palliative medicine education into undergraduate health education.Materials and Methods:A non-randomized population based study was conducted using 39-point questionnaire. Undergraduate medical, nursing and allied health students of Manipal University were the target population.Results:326 students participated in the study. 61.7% of students feel that resuscitation is appropriate in advanced metastatic cancer. 67.5% feel that all dying patients need palliative care and most of the students think that palliative care is equivalent to pain medicine, geriatric medicine and rehabilitation medicine. 89% of students think that Morphine causes addiction in palliative care setting. 60.7% of students feel that prognosis should only be communicated to the family.Conclusion:The outcomes of the study showed that the basic knowledge of palliative care among students was inadequate, and students are unprepared and uncertain in their approach of delivering end-of-life care.
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