INDIAN JOURNAL OF MEDICAL ETHICS | Online – Accessed 24 March 2015 – It was in the early 1990s that an appeal was made, both in India and globally, for access to palliative care to be treated as a human rights issue. Over the past few years, India has witnessed robust advocacy efforts, which push for the consideration of palliative care and pain management as a human right. Central to this paper is India's Narcotic Drugs & Psychotropic Substances (NDPS) Act, 1985: its genesis, its critique, and the amendments aimed at enhancing access to the NDPS for medical care and research. The author refers to the advocacy efforts in India, particularly the most recent ones, which led to the amendments to the NDPS Act (1985) in February 2014; and the contribution of the global and local human rights discourse on palliative care to these efforts.
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INTERNATIONAL JOURNAL OF CLINICAL MEDICINE, 2015;6;158-169 The purpose of the Hospice Home Immersion Project is to provide second year medical students with firsthand experiences of living in the hospice home for 48 hours to answer the question: "What it is like for me to live in the hospice home?" The results focus on the students' common themes that include 1) unknown territory; 2) support; 3) role of staff; 4) role of immersion learning in palliative and end- of-life care; 5) facing death and dying; and, 6) clinical pearls. This project humanizes dying and death, solidifies student realization that dying is a part of life and what an honor it is to be a part of the care process that alleviates pain, increases comfort, values communication, and human connections. Students report new-found skills in patient care such as the 1) importance of physical touch; 2) significance of communication at the end of life for the patient, family, and staff; 3) the value of authenticity and sincerity that comes from being comfortable with oneself, which allows silence to communicate caring; 4) connection with and awareness of the person (rather than their terminal illness) and their family; and, 5) the importance of speaking with patients and their families about end-of-life plans in advance. Although this is a time-intensive experience for the faculty member and the hospice home staff, the depth of learning experienced by the students and opportunities to advance medical education in death and dying are well worth the efforts.
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INTERNATIONAL JOURNAL OF PALLIATIVE CARE | Accessed 10 April 2015 – Relatives, physicians, and nurses (i.e., study participants) had different perspectives on the quality of the final days of patients’ lives, on their quality of dying, and on communication about impending death. Everyone seems to experience his/her “own truth.” To achieve improvements in care in the dying phase, more emphasis should be put on the collaboration between healthcare professionals and relatives in the therapeutic alliance with patients. Furthermore, physicians should be more willing to timely discuss a poor prognosis and to check whether patients and relatives’ understanding aligns with theirs.
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INTERNATIONAL JOURNAL OF PALLIATIVE CARE & MEDICINE | Online – 5 March 2015 – How doctors and nurses talk with families about decisions that lead to treatment withdrawal in intensive care is important and has been well explored. However, less is known about what family members perceive as important once this decision has been made. This study explores the needs of family members during and after treatment has been withdrawn in intensive care. Whilst family members (i.e., study participants) were able to broadly recollect conversations with doctors and nurses about the decision to withdraw treatment, there were detailed accounts of what was important to family members after that decision was made. In this, family members recalled wanting to: alleviate further suffering, re-establish identity of, and re-connect relationships with, the dying person. Bereaved family members spoke about the activities they undertook to realize these. At interview, family members demonstrated ongoing distress about situations perceived as preventing achievement of these.
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JOURNAL OF CLINICAL ONCOLOGY | Online – 23 March 2015 – Half of all patients with cancer might be predicted to die as a result of the disease within five years. Ask yourself whether an individual patient might die within a year, and you are likely to be incorrect in your estimate. But what is certain is that you will not be able to cure everyone. Palliative care offers patients and (note) their families a comprehensive package of care by a team of professionals who become experts in solving the difficult and multiple symptoms and problems that usually arise in advanced stages of the disease, helping to achieve comfort and eventually a peaceful death and bereavement. The practice has matured during the last 50 years, and it can be provided together with curative treatment. There are approximately 16,000 palliative care services worldwide, and fast-growing research demonstrates the effectiveness of interventions, most notably that of home-based models of palliative care to support patients in their own homes, which is where most would prefer to be cared for and die, with family nearby. In 2012, after publication of strong evidence from a phase III randomized controlled trial, an American Society of Clinical Oncology provisional clinical opinion recommended consideration of combined standard oncology care and palliative care early in the course of illness for any patient with metastatic cancer and/or a high symptom burden. In 2014, a landmark resolution was passed unanimously at the World Health Assembly that called for all state members to strengthen palliative care as a component of integrated treatment within the continuum of care. The question of when to initiate is central to this hoped-for integration.
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OMEGA – JOURNAL OF DEATH & DYING, 2015;70(4):380-403. While end-of-life issues are increasingly gaining more attention, people with intellectual and developmental disabilities (IDD) continue to receive significantly less consideration in research, education, and clinical practice compared with the general population. This is a growing concern especially since the sheer number of persons aging with IDD is expected to double in the next 17 years. Furthermore, policies are shifting to reflect a preference for home and community-based services as an alternative to institutionalization, and it becomes evident that adult day services (ADS) may be ideal settings for receipt of end-of-life care, especially among individuals with IDD. However, end-of-life care and advance planning most commonly occur in long-term care settings for the general population and have historically been less of a priority in ADS and residential services for people with IDD. This article discusses the attitudes of, and collaboration between, ADS and end-of-life providers for aging adults, including persons with IDD, and explores how ADS may be a great pathway for delivering end-of-life care to the IDD population. Implications and recommendations will also be examined.
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Media Watch is intended as an advocacy and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC will publish an abstract or summary of an article or report of special interest noted in a recent issue of Media Watch (see below).
The current and back issues of the weekly report.
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