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The interview discusses Chamberlin's role in mental illness patient liberation and processes and history behind her choices. The author presents materials from current and former interviews with Chamberlin. The interview discusses the insurance industry's position and measures, absence of mental health patients opinions, and medication policies and research therein. Chamberlin discusses hospice care, and daily life and thoughts, before elaborating on the mental patients liberation front and call for alterative services. The author asks Chamberlin the difficult questions, including those regarding respect toward the opinions of the mentally ill, thoughts regarding treatment and sociological factors; such as the political correctness and current public treatment as individuals. Adapted from the source document.

The purpose of this study is to develop a productivity measurement applicable to home health registered nurses (RNs) by identifying and quantifying the knowledge and ability variables that define productive nurse practice. A preliminary set of knowledge and ability variables was identified based on content analysis of interviews with local nurse managers and round I of a three round Delphi procedure, using a purposive sample of nurse managers from nationally preeminent agencies. A randomized national sample of 337 nurse managers was then surveyed to determine the relative value and rank of the knowledge and ability variables. These variables were refined during Delphi round II and III. Based on the three Delphi rounds, the interviews and the responses to the national survey, a profile was developed, using factor analysis, consisting of 35 important knowledge and ability variables. These variables clustered into seven constructs: Practice Management, Knowledge/Skill Maintenance, Written Documentation, Home Health Care Knowledge, Communication, Nursing Process, and Client/Family Management. Within these seven constructs, the following individual variables were considered most important: skill in health assessment and hands on technical skill, documentation, independent decision making, communication, organizational ability, and a foundation in teaching/learning principles and home care rules and regulations. Qualitatively identified associations among variables were statistically supported. Nonparametric tests, including the Kruskal-Wallis and Mann-Whitney U test, were used to identify differences in the importance of specific knowledge and ability variables among governmental, hospital based, proprietary, and VNA agencies, and between hospice and non-hospice agencies. No significant differences were found among agency types. However, among agencies considered "preeminent," intellectual skills appeared to be of greater importance to productive practice than direct care skills. Results of this study suggest a profile of productivity dimensions which provides (1) a theoretical basis for understanding the knowledge and ability variables associated with RN productivity in the home health setting, (2) a description of nurse inputs in a home health services productivity model, and (3) a reality based measurement tool that has utility in understanding and managing RN productivity in home health care.

BACKGROUND: The Quality of Dying and Death (QODD) questionnaire is used as a selfreported measure to allow families and clinicians to assess patients' quality of dying and death. We evaluated end-of-life (EOL) experiences as measured by the QODD completed by families and nurses in the United States and the Netherlands to explore similarities and differences in these experiences and identify opportunities for improving EOL care. METHODS: Questionnaire data were gathered from family members of patients dying in the ICU and nurses caring for these patients. In The Netherlands, data were gathered in three teaching hospitals, and data was gathered from 12 sites participating in a randomized trial in the United States. The QODD consists of 25 items and has been validated in the United States. RESULTS: Data from 446 patients were analyzed (346 in the United States and 100 in the Netherlands). Dutch patients were older than those in the United States (72 + 10.2 years vs 65 + 16.0 years; P <.0025). The family-assessed overall QODD score was the same in both countries: the Netherlands = median, 9; interquartile range (IQR), 8-10 and the United States = median, 8; IQR, 5-10. US family members rated the quality of two items higher than did the Netherlands families: "time spent with loved ones" and "time spent alone." Nurseassessed QODD ratings varied: the single-item QODD summary score was significantly higher in the Netherlands (the Netherlands: median, 9; IQR, 8-10 vs the United States: median, 7; IQR, 5-8; P <.0025), whereas the QODD total score was higher in the United States (the Netherlands: median, 6.9; IQR, 5.5-7.6 vs the United States: median, 7.1; IQR, 5.88.4; P = .014), although it did not meet our criteria for statistical significance. Of the 22 nurse-assessed items, 10 were significantly different between the Netherlands and the United States, with eight having higher scores in the United States and 2 having higher scores in the Netherlands. CONCLUSIONS: The QODD was rated similarly by family members in ...

The aim of this paper is to inform the readers of the latest developments in the British National Health Service relevant to the wellbeing of older people. In Britain, the wellbeing of the elderly is addressed from a wide range of perspectives, independence being one of the dominant themes underlying the efforts of medical and social services. Thorough and systematic investigation of older people's needs is another important theme together with the understanding of the importance of end-of-life care that should be sensitive and responsive to the dying person's wishes. As the issues of assisted living, day care, long-term care, residential care, home care and hospice care involve many processes and many different professionals, this discussion may be useful for researchers and social workers involved in the development of social/research programs aimed at promoting the wellbeing of older people. The readers will be able to evaluate and reflect on relevant British legislation and practices involved in the care of elderly patients.

Denkt man an Palliative Care und hört den Satz "Es ist noch viel zu tun", kommen einem sofort die Einrichtungen in den Sinn, die (immer noch) fehlen, die Überzeugungsarbeit, die (immer noch) zu leisten ist, und die finanziellen Mittel, die nach wie vor zu gering sind...

CONTEXT. The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE. The main objective of this article is to present the research behind the new definition. METHODS. The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS. The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION. Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

In their everyday work, health professionals find themselves in situations that they perceive to be abusive to patients. Such situations can trigger feelings of shame and guilt, making efforts to address the problem among colleagues a challenge. This article analyzes how health professionals conceptualize abusive situations, and how they develop collective learning and explore preventive strategies. It is based on an interactive research collaboration with a hospice and palliative care clinic in Sweden during 2016–2017. The empirical material consists of group discussions and participant observations collected during interactive drama workshops for all clinic staff. Based on three types of challenges in the material, identified through thematic analysis, we establish the concept of navigation work to show how health professionals prevent or find ways out of challenging and potentially abusive situations. First, the navigation of care landscapes shows how staff navigate the different territories of the home and the ward, reflecting how spatial settings construct the scope of care and what professionals consider to be potentially abusive situations. Second, the negotiation of collective navigations addresses the professionals' shared efforts to protect patients through the use of physical and relational boundaries, or mediating disrupted relationships. Third, the navigation of tensions in care highlights professionals' strategies in the confined action space between coercing and neglecting patients who oppose necessary care procedures. Theoretically, the concept of navigation work draws upon work on care in practice, and sheds light on the particular kind of work care professionals do, and reflect on doing, in order to navigate the challenges of potentially abusive situations. By providing a perspective and shared vocabulary, the concept may also elicit ways in which this work can be verbalized, shared, and developed in clinical practice. ; Funding agencies: Swedish Research Council [2014-2749]

The National Academy of Medicine in its 2015 report, Dying in America, advocates advance care planning (ACP) as vital for people with serious, advanced illness to assure that health care decisions near the end of life are made according to their preferences and values. This allows the very ill to forego unwanted invasive procedures that might detract from the quality of their lives, and instead choose hospice and other palliative measures that focus on quality of life and comfort. This symposium presents policy, practice, and research strategies from social work perspectives. The first presentation from an author of Dying in America and of the 2016 Roundtable on Quality Care for People with Serious Illness, describes innovative legislative proposals and policies, resources, online registries, and evidence-based quality measures that promote ACP. The second presenter uses data from a national survey to describe the extent to which hospice and palliative care social workers facilitate, conduct, and lead ACP planning activities. The third presentation describes findings from interviews with bereaved caregivers on how ACP and ongoing communication influenced outcomes at the end of their loved one's life. Finally, the fourth presenter discusses attitudes and behaviors toward advanced directives among Chinese American older adults, and the importance of culture. Each of the presenters discusses the implications of these findings and potential strategies for policymaking, practice, and research.

The European Council, the World Health Organization, the International Association of Hospice and Palliative Care, and various other national guidelines emphasize equal provision of palliative care. To fulfill this vision, all involved need to be aware of the existing situation even in western European countries. Data from the European Atlas of Palliative Care and the Swedish Registry of Palliative Care are used to illustrate the present inequalities. The data illustrate the unequal provision of palliative care relating to level of care, place of residence, diagnoses, and age. The challenge of providing equal palliative care remains, even in Western European countries, in spite of all positive developments. Different approaches that may contribute to successful implementation of equal palliative care are discussed. The challenge is still there and will require some effort to resolve.

A practical guide to improve care for sick and dying children of different faiths and their families. Drawing on evidence-based research and practice, it discusses multi-faith daily, palliative, end of life and bereavement care in a variety of settings, including hospitals, hospices, schools and at home. The book also contains case studies

"From its origins, with leaders such as Dame Cicely Saunders, Eric Wilkes, Colin Murray and James in the United Kingdom, Balfour Mount in Canada, Vittorio in Italy, and Elizabeth Ross and Avery Weisman in the United States, hospice and palliative care has always embraced the "whole" person, in the context of their family. From her observations of people with advanced and progressive illness, Dame Cicely Saunders introduced the concept of "total pain." Pain had physical, emotional, social, and spiritual components, all of which needed to be addressed. Of course, excellent control of pain and other symptoms is vital, but the role of the palliative care team, including the physicians, is much more than this. It also extends beyond expertise in the management of physical and psychiatric symptoms. Effective symptom control may be necessary before other goals of hospice and palliative care can be achieved. But equally, failure to address emotional, social, or spiritual components of symptoms may lead to inadequate symptom control. Physicians can and should contribute to this holistic assessment and care. This is why palliative medicine is a rewarding field for physicians-there is much opportunity to practice comprehensive whole person care"--

CONTEXT. Researchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority. OBJECTIVES. This study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions. METHODS. This study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011-2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics. RESULTS. No or minimal caregiving burden is associated with ≥0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with ≥0.80 probability of giving such reports, even when perceiving high burden. CONCLUSION. Caregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.

This is a follow-up to the practical research on hospice healthcare patients that proved they need either 'Spiritual' or/and 'Religious' assistance and that these needs are basic, natural, and almost standard. Since that research with direct involvement in palliative care greatly helps the multidisciplinary team develop an improved intervention plan, I thought additional explanations are necessary. In this regard, I have written this article to further interpret my observations on palliative care over the last couple of years. To conclude most straightforwardly, the research draws a demarcated line between how people in 'total suffering' relate to Spiritual vs. Religious assistance as these two ways are very similar on the surface, but when engaged, they start building distinct, self-sustaining paths. Why is that, and how can each assist hospice - this is the target of the current text.

Breathlessness support services have demonstrated benefits for breathlessness mastery, quality of life and psychosocial outcomes for people living with breathlessness. However, these services have predominantly been implemented in hospital and home care contexts. This study aims to evaluate the adaptation and implementation of a hospice-based outpatient Multidisciplinary Breathlessness Support Service (MBSS) in Ireland. A sequential explanatory mixed methods design guided this study. People with chronic breathlessness participated in longitudinal questionnaires ( n = 10), medical record audit ( n = 14) and a post-discharge interview ( n = 8). Caregivers ( n = 1) and healthcare professionals involved in referral to ( n = 2) and delivery of ( n = 3) the MBSS participated in a cross-sectional interview. Quantitative and qualitative data were integrated deductively via the pillar integration process, guided by the RE-AIM framework. Integration of mixed methods data enhanced understanding of factors influencing the reach, adoption, implementation and maintenance of the MBSS, and the potential outcomes that were most meaningful for service users. Potential threats to the sustainability of the MBSS related to potential preconceptions of hospice care, the lack of standardized discharge pathways from the service and access to primary care services to sustain pharmacological interventions. This study suggests that an adapted multidisciplinary breathlessness support intervention is feasible and acceptable in a hospice context. However, to ensure optimal reach and maintenance of the intervention, activities are required to ensure that misconceptions about the setting do not influence willingness to accept referral to MBSS services and integration of services is needed to enable consistency in referral and discharge processes.

Preliminary Material /Nate Hinerman and Mary Ruth Sanders -- Peering over a Cliff Edge: Legal Decision and Ethical Issues in Ian McEwan's The Children Act (2014) /Luísa Maria Flora -- Cemeteries in Jakarta: Corpse Treatment and Management /Raditya Hari Murti -- Surviving the 'Dark Night' with the 'Rising of the Sun': When the Monarch Dies /N. Zeynep Yelçe -- The Rebirth of Death: Representation of Loss in Television Series /Mattia Cinquegrani -- Overcoming Loss in the Context of Dark Tourism: Inspiration in Kierkegaard's Writings /Katarína Gabašová -- The Effectiveness of Camp Oz in Children's Grief Process /Eunhye Choi and Sarah K. Sifers -- The Future of Living (and Dying) in the U.S.: What Roles will Hospice and Palliative Care Play /Nate Hinerman -- Think Ahead: An Irish Advance Planning Tool /Sarah Murphy -- The Ethics of POLST /Lloyd Steffen -- What Remains: The Middle English Disputation Between the Body and the Worms and the Late Medieval Experience of Death /Martin Blum -- Theological Narratives of Loss in Response to Terrorism /Mary Ruth Sanders -- Making Peace with Grief through Indigenous Wisdom /Tomofumi Oka -- Traditions in Transition: Practices Related to Stillbirth in a Multicultural Society /Ellen Kristvik.