Breast cancer continues to be the most frequently diagnosed cancer in women and the leading cause of cancer death worldwide. By the suffering that it causes in various domains of life, breast cancer seriously impacts the quality of life of affected individuals and causes a major burden of suffering in the community. The objectives of the review were to understand the health-related suffering in patients with breast cancer and to identify the scope of palliative care in improving the quality of life of patients with breast cancer. Breast cancer causes suffering in physical, psychological, social, financial, and spiritual domains of the lives of the patient and family. Management of breast cancer with surgery, chemotherapy, and radiation could have adverse effects, such as pain, nausea and vomiting, fatigue, shortness of breath, depression, and constipation. Both cancer and its treatment can impact the psychosocial and spiritual well-being of the patient and family members. Integrating palliative care into existing breast cancer treatment programs seems to be the best approach to diminish these sufferings. In addition to pain and other physical symptoms, breast cancer can cause major psychological, social, and spiritual suffering. In the context of developing countries, out-of-pocket expenditure can cause major financial destruction which can impact generations. Integration of palliative care to breast cancer treatment is essential.
CONTEXT:The city homecare unit (CHU) of the Trivandrum Institute of Palliative Sciences was dissatisfied with the quality of care provided to their patient population.AIMS:This study aims to improve the average satisfaction score of CHU during their daily homecare services.SETTINGS AND DESIGN:The improvement project for the CHU activities was conducted with a prospective plan-do-study-act design, with stepwise application of improvement tools.MATERIALS AND METHODS:The A3 quality improvement (QI) methodology, which uses tools for (i) analysing contributors (process mapping, cause-effect diagram); (ii) to derive key drivers (Pareto chart) and (iii) for measuring impact of interventions and sustainability (annotated run chart) was applied. The project was conducted as a mentored activity of the PC-PAICE program. The team's weekly average satisfaction score was recorded prospectively as the outcome parameter, with 0 representing total dissatisfaction and 10 representing total satisfaction. Accuracy of triaging and appropriateness of registration process were the process parameters selected. These were recorded as run charts across the project period of 9 months.ANALYSIS AND RESULTS:The cause-effect tool and the impact effort tool were used to analyse the mapped CHU processes. Even though we identified 22 contributors to the problem, eight of them were found to be significant. Key drivers were determined based on these eight and applied to the CHU processes. Over the project period, the satisfaction scores of the CHU improved significantly from 5.82 to 7.6 that is, satisfaction levels were high on most days. The triaging and registration goals were achieved. The team also built its own capacity for QI.CONCLUSION:The application of the A3 methodology simplified and streamlined efforts and achieved the quality goal for the CHU team.
Mentors at seven U.S. and Australian academic institutions initially partnered with seven leading Indian academic palliative care and cancer centers in 2017 to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement (QI). From its inception in 2017 to 2020, the Palliative Care—Promoting Accesst and Improvement of the Cancer Experience Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai QI training hub in 2019 with philanthropic support. In 2020, the project which is now named Enable Quality, Improve Patient care - India (EQuIP-India) focuses on both palliative care and cancer teams. EQuIP-India now leads ongoing Indian national collaboratives and training in QI and is integrated into India's National Cancer Grid. Palliative Care—Promoting Accesst and Improvement of the Cancer Experience demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer QI. It is one of the several networked and blended learning approaches with potential for rapid scaling of evidence-based practices.
Methadone is a naturally long-acting analgesic with unique pharmacodynamic and pharmacokinetic properties compared to other opioids, available now in India, to treat severe pain. It has the potential to dramatically relieve suffering among patients with serious illness who are living with persistent physical pain. However, clinicians must appreciate its unique pharmacologic properties and its use in clinical practice safely and effectively. The available formulation in India is a racemic mixture of the S- and R-enantiomers, and as such, it will have a propensity for drug-drug and drug-genetic interactions that can increase the risk of Torsades de Point and respiratory depression. Appropriate patient selection, careful dosing and thorough monitoring of methadone will mitigate these risks.
Indian Journal of Palliative Care ¦ Volume 23 ¦ Issue 2 ¦ April-June 2017 122 Introduction: Death is inevitable but the manner in which a person dies is fundamental to the person concerned and their nearest and dearest. The effects of poor care leading to death are distressing for patients and also have long term effects for those closest to the patient. Sadly, end of life care remains under resourced and funded not only in terms of service provision but equally in research funding. This paper describes the work of a group of committed International health care professionals whose mission is to improve the care for the dying by sharing their knowledge expertise and engaging in Collaborative innovation research and education. The group, known as The International Collaborative for Best Care for the Dying Person was officially formed in January 2014. The Coordinating Centre for the Collaborative is based at the Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, UK. Collaborative Vision: The vision of the Collaborative is for a world where all people experience a good death as an integral part of their individual life, supported by the very best personalised care. Background of the Collaborative: An international meeting was held in Liverpool, UK, November 2013, attended by leading thinkers, practitioners, and researchers in care for the dying from 12 countries. The group had been working together for a number of years with a shared focus on the Liverpool Care Pathway for the Dying Patient (LCP) International Continuous Quality Improvement Programme[1] to drive up the quality for care for the dying in the last few days and hours of life at the clinical interface. In 2009 the LCP became the focus of the societal debate across print and broadcast media in England. Despite a randomized control trial (RCT) in Italy which, although underpowered, found an overall improvement for patients who were cared for in wards where the LCP was used (Costantini et al., 2014),[2] and the finding of the Neuberger Review into the LCP,[3] which highlighted the ethical basis of the LCP and its efficacy when used appropriately, the LCP was withdrawn from use in England with effect from July 2014. The international group had also been working together on a wider suite of work packages related to research and development and knowledge transfer related to care for the dying person. The group was successful in securing funding by an EU FP7 Co-ordination and Support Action grant of €2.2million to optimise research for the care of cancer patients in the last days of life. This collaborating project was called OPCARE9. OPCARE9 generated a series of research protocols for further research and development, which have been taken forward within the Key Research and Development arm of our International Collaborative. A final Dissemination Conference involving over 300 multi-professional delegates worldwide, and a high profile international Policy Summit, presented findings of best practice, key issues, and themes from OPCARE9, which was attended by senior governmental and clinical practitioners from the 9 countries of the project. To take forward this work it was agreed in November 2013 to establish ‘The International Collaborative for Best Care for the Dying Person’, taking our collaborative of leading international experts and researchers forward in a renewed focus on the international evidence and the next steps in improving care for dying patients and their families. This has strengthened worldwide commitment and capacity to undertake high quality, robust research, to utilise service innovation and improvement methodology, evaluation, and knowledge transfer to improve care for the dying in the 21st Century on a global basis. The Collaborative was formally launched in January 2014 and its first International Conference was held in Lund, Sweden in November 2014. A constitution was agreed and an executive committee established. The Chair of the Collaborative is John Ellershaw Professor of Palliative Medicine University of Liverpool and the executive committee has representatives from seven countries. The Objectives of the Collaborative: The collaborative will • Build on, extend, and foster the Collaborative working relationship established during the OPCARE9 EU 7th Framework Project guided by the principles of the Collaborative for Best Care for the Dying Person • Drive forward an international ‘care for the dying’ research agenda and to undertake collaborative international research • Encourage international learning and teaching collaborations to improve the care for the dying • Set, articulate and nurture care for the dying related values, quality indicators, obligations, and strategic aims across the international clinical community • Provide an international platform for health professionals to communicate with each other to improve the care for the dying • To support the development of an “international programme” and associated materials and processes within a five-year Quality Assurance Cycle • Develop an effective communication strategy across international partners to enable innovative growth in support of dynamic international care for the dying work streams acknowledging, disseminating, and celebrating success • Develop and take part in societal debate about care for the dying person and the wider issues of death and dying in society • Hold an Annual General Meeting • Hold an Annual International Conference. The Work of the Collaborative: The work of the Collaborative incorporates project groups around four main themes: • The International Programme • Research and Development • Learning and Teaching • Quality assurance. The International Programme incorporates core clinical guidance derived from the International 10 Principles and the International Core Elements for Best Care for the Dying Person[4] that enables effective engagement at the clinical interface supported by a robust implementation and dissemination process for translation of best care to the bedside. This Programme is at the heart of what the Collaborative does. If member organisations wish, they are free to submit their care plan to the Executive committee for congruence assessment against the Internationally agreed guidance. If congruent the organisation is able to badge their document with the Collaborative logo. The Research and Development theme incorporates project groups to strengthen worldwide commitment and capacity to undertake high quality, robust research in this complex, critical area of care. This includes a range of cross cutting themes and methodologies including quality outcomes and indicators. The Collaborative will enable valid, reliable and transferable evidence to be generated, supporting important developments and advances in clinical practice and policy. Collaborative partners have recently been successful in securing an ERANET LAC research grant, for a proposal submitted by Professor Dagny Faksvag Haugen from Norway on
Context: Sexual dysfunction is a major concern for Indian men living with a spinal cord injury. Few first-hand reports exist about the experience of living with an altered sense of sexual identity and the inability to express sexual concerns.Aims: In this qualitative study, the authors explore views and attitudes towards sexual functioning in men living with a spinal cord injury in Kerala, India.Materials and Methods: Semi-structured and open-ended interviews were conducted with seven participants according to IE Seidman's phenomenological approach. Thematic analysis followed the analytic process outlined by Moustakas (1990).Results: Identification of seven interconnected themes included: Recalling an active sexual life, disconnection with sexual identity, incongruence between emotional and physical capability, spousal isolation, social readjustment of spouse, physical barriers to sexual functioning, coping, and reintegration.Conclusions: Patient's descriptions of suffering demonstrate complexities of experience in sexual functioning. All patients were sexually active prior to the injury. This was now lost causing anxiety, distress, and sadness. A huge gap existed between sexual desire and physical capability. The patient and spouse were now isolated emotionally, socially, and physically. Physical barriers included urinary incontinence and indwelling catheters. While several self-evolved coping strategies were identified, support from palliative care services was not evident. Two important gaps exist in research and practice: (1) Attention to sexual issues and whole-person care. (2) Attention to quality of sexual life. Future qualitative studies on sexual dysfunction could provide a useful adjunct to current literature which is predominantly biomedical in its approach.
Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved.Aims: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country.Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale.Results: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards.Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.