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end of life decisions

Robert Horowitz, Bernard Sussman, Timothy Quill
In this article three palliative care physicians review narratives about the complicated experience of voluntarily stopping eating and drinking (VSED). Despite consensus about its legality, the decision to end life by VSED is emotionally and ethically challenging for patients, family members and clinicians. Each VSED story is unique, and the individual perspectives within a single story may diverge, conflict, and evolve over time. The narratives differ substantially in the range of suffering described, from acute, graphic, physical symptoms to primarily anticipatory and psychological distress...
2016: Narrative Inquiry in Bioethics
Jianfei Fu, Lunpo Wu, Mengjie Jiang, Dan Li, Ting Jiang, Zhongwu Hong, Fan Wang, Shuguang Li
BACKGROUND: The features related to the prognosis of patients with mucinous breast cancer (MBC) remain controversial. We aimed to explore the prognostic factors of MBC and develop a nomogram for predicting survival outcomes. METHODS: The Surveillance, Epidemiology, and End Results (SEER) database was searched to identify 139611 women with resectable breast cancer from 1990 to 2007. Survival curves were generated using Kaplan-Meier methods. The 5-year and 10-year cancer-specific survival (CSS) rates were calculated using the Life-Table method...
2016: PloS One
Jennifer M Hensel, Jay Shaw, Lianne Jeffs, Noah M Ivers, Laura Desveaux, Ashley Cohen, Payal Agarwal, Walter P Wodchis, Joshua Tepper, Darren Larsen, Anita McGahan, Peter Cram, Geetha Mukerji, Muhammad Mamdani, Rebecca Yang, Ivy Wong, Nike Onabajo, Trevor Jamieson, R Sacha Bhatia
BACKGROUND: Mental illness is a substantial and rising contributor to the global burden of disease. Access to and utilization of mental health care, however, is limited by structural barriers such as specialist availability, time, out-of-pocket costs, and attitudinal barriers including stigma. Innovative solutions like virtual care are rapidly entering the health care domain. The advancement and adoption of virtual care for mental health, however, often occurs in the absence of rigorous evaluation and adequate planning for sustainability and spread...
October 18, 2016: BMC Psychiatry
Li Yang, Seng Chuen Tan, Can Chen, Xingzhi Wang, Xinya Li, Xiaoyan Yang
PURPOSE: To conduct a cost-effectiveness analysis study of sevelamer versus calcium-based binders (CBBs) in treating hyperphosphatemia among patients with end-stage renal disease (ESRD) in China. METHODS: A decision-analytic model of a lifetime horizon was used for base case analysis from the payers' perspective. The transition probabilities between different health states were derived from survival analysis. The overall survival of CBBs was derived from the Dialysis Clinical Outcomes Revisited study for up to 44 months and a Weibull regression model was used to extrapolate the overall survival to a lifetime horizon...
October 14, 2016: Clinical Therapeutics
Jérôme Allyn, Cyril Ferdynus, Michel Bohrer, Cécile Dalban, Dorothée Valance, Nicolas Allou
BACKGROUND: End-of-life decision-making in Intensive care Units (ICUs) is difficult. The main problems encountered are the lack of a reliable prediction score for death and the fact that the opinion of patients is rarely taken into consideration. The Decision Curve Analysis (DCA) is a recent method developed to evaluate the prediction models and which takes into account the wishes of patients (or surrogates) to expose themselves to the risk of obtaining a false result. Our objective was to evaluate the clinical usefulness, with DCA, of the Simplified Acute Physiology Score II (SAPS II) to predict ICU mortality...
2016: PloS One
Amanda van Beinum, Laura Hornby, Sonny Dhanani, Roxanne Ward, Jane Chambers-Evans, Kusum Menon
Studying patients during the end of life is important, as it has the potential to lead to improvements in care for the dying. For patients who die after a controlled withdrawal of life-sustaining therapies in the intensive care unit, information about the natural history of death and the process of removing life support has additionally led to advances in practice for deceased organ donation. However, this unique population of severely critically ill and imminently dying patients has been difficult to study, largely due to assumptions made by research teams and ethics boards alike about the logistical difficulties of obtaining consent and completing research procedures before or during the process of withdrawal of life-sustaining therapies...
October 13, 2016: Journal of Medical Ethics
Osamu Muramoto
BACKGROUND: This essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over 2 years illustrates how such a consent would have made a crucial difference...
October 13, 2016: Philosophy, Ethics, and Humanities in Medicine: PEHM
Fabiana Gatti de Menezes, Rodrigo Martins Abreu, Alexander Itria
Introduction: Secondary hyperparathyroidism (SHPT) is a consequence of chronic kidney disease. The treatment at the Brazilian Unified Heath System (SUS) is performed with calcitriol, a drug which favors hypercalcemia and/or hyperphosphatemia, hindering the control of SHPT. Another option is paricalcitol, which causes parathormone (PTH) suppression faster than calcitriol, with minor changes in calcium-phosphorus product and calcium and phosphorus serum levels. Objective: This study aims to develop a cost-effectiveness analysis of paricalcitol versus calcitriol for patients in dialytic treatment with SHPT, from the SUS perspective...
July 2016: Jornal Brasileiro de Nefrologia: ʹorgão Oficial de Sociedades Brasileira e Latino-Americana de Nefrologia
Jaclyn Yoong, Aleece MacPhail, Gael Trytel, Prashanti Yalini Rajendram, Margaret Winbolt, Joseph E Ibrahim
Objective Limitation of Medical Treatment (LMT) forms are an essential element of end-of-life care. Decision making around LMT is complex and often involves patients with dementia. Despite the complexity, junior doctors frequently play a central role in completing LMT forms. The present study sought perspectives from a range of stakeholders (hospital clinicians, medical education personnel, legal and advocacy staff) about junior doctors' roles in completing LMT forms in general and for patients with dementia...
October 14, 2016: Australian Health Review: a Publication of the Australian Hospital Association
Kaisa Rajala, Juho T Lehto, M Saarinen, E Sutinen, T Saarto, M Myllärniemi
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive disease with median survival from 2 to 7 years. Palliative care is an important part of patients´ care as lung transplantation is not an option for the majority of patients. The aim of this study was to describe treatment practices, decision-making and symptoms during end-of-life care of IPF patients. METHODS: We identified 59 deceased patients from a national prospective IPF cohort study (FinnishIPF) and analyzed retrospectively their health care documentation during the 6 months that preceded death...
October 12, 2016: BMC Palliative Care
David Li, Holly G Prigerson, Josephine Kang, Paul K Maciejewski
CONTEXT: Radiation therapy (RT) is used with palliative intent in patients with advanced stage cancer. Prior studies, primarily in patients with poor performance status (PS), suggest that RT is associated with aggressive medical care, which may impact patients' quality of life near death (QoD) adversely. OBJECTIVE: This study examines associations between RT use and patients' receipt of aggressive care and QoD based on patients' PS. METHODS: Multi-institutional, prospective cohort study of patients with end-stage cancers (N=312) and identified as terminally ill at study enrollment...
October 5, 2016: Journal of Pain and Symptom Management
Silvia Villa, Friederike Kendel, Lionne Venderbos, Tiziana Rancati, Chris Bangma, Peter Carroll, Louis Denis, Laurence Klotz, Ida J Korfage, Athene J Lane, Tiziana Magnani, Ken Mastris, Antti Rannikko, Monique Roobol, Bruce Trock, Roderick Van den Bergh, Hendrik Van Poppel, Riccardo Valdagni, Lara Bellardita
BACKGROUND: Literature on the health-related quality of life (HRQoL) for men with localized prostate cancer (PCa) on active surveillance (AS) shows a need for methodological guidance regarding HRQoL issues and how to address them. OBJECTIVE: The European School of Oncology Task Force (ESO TF) aimed to identify a core set of research questions and related measures to include in AS HRQoL studies. DESIGN, SETTING, AND PARTICIPANTS: A modified Delphi study was used to reach consensus on AS HRQoL research topics and tools between 2014 and 2015...
October 6, 2016: European Urology
Benjamin Djulbegovic, Athanasios Tsalatsanis, Rahul Mhaskar, Iztok Hozo, Branko Miladinovic, Howard Tuch
INTRODUCTION: Management choices at the end of life are high-stake decisions fraught with emotions, chief among is regret. Our objective in this paper is to test the utility of a regret-based model to facilitate referral to hospice care while helping patients clarify their preferences on how they wish to spend the remaining days of their lives. METHODS: A prospective cohort study that enrolled consecutive adult patients (n = 178) aware of the terminal nature of their disease...
October 3, 2016: European Journal of Cancer
Joy E Lawn, Hannah Blencowe, Mary V Kinney, Fiorella Bianchi, Wendy J Graham
Despite the impressive progress gains for maternal and child health during the Millennium Development Goals era, over 5.6 million women and babies died in 2015 due to complications during pregnancy, birth and in the first month of life. In order to achieve the new mortality targets set out in the Sustainable Development Goals, there needs to be intentional efforts to maintain and accelerate action to end preventable maternal and newborn deaths and stillbirths. This paper outlines what progress is required to meet these new 2030 targets based on patterns of progress in the recent past; where the burden is the greatest; when to focus attention along the continuum of care; and what causes of death require concerted efforts...
July 28, 2016: Best Practice & Research. Clinical Obstetrics & Gynaecology
Philip G Richardson, Jaimi Greenslade, Jonathon Isoardi, Michael Davey, Mark Gillett, Alicia Tucker, Sharon Klim, Anne-Maree Kelly, Ibrahim Abdelmahmoud
OBJECTIVE: We investigated and compared the importance of the considerations and discussions when withdrawing and withholding life-sustaining healthcare between emergency physicians (EP) and emergency registrars (ER). METHODS: This was a sub-study of a prospective cross-sectional questionnaire-based case series conducted in six EDs. Primary outcomes were, which of the discussion and considerations, were rated most important by EP and ER in the decision-making process...
October 4, 2016: Emergency Medicine Australasia: EMA
F J Erbguth, L Erbguth
End-of-life decisions in neurology have repeatedly given occasion for controversies. Often these are based on lack of knowledge of the juridical and ethical framework conditions. This review describes the juridical-ethical basis for the implementation and continuation, and for withholding and withdrawal of life-sustaining measures, in particular, the significance of medical indication and patient's will. The different forms of assisted dying ("Sterbehilfe"), namely homicide by request, assisted suicide, palliative symptom relief and treatment withdrawal are characterized...
September 2016: Deutsche Medizinische Wochenschrift
Brian Clemency, Colleen Clemency Cordes, Heather A Lindstrom, Jeanne M Basior, Deborah P Waldrop
OBJECTIVES: What patients intend when they make health care choices and whether they understand the meaning of orders for life-sustaining treatment forms is not well understood. The purpose of this study was to analyze the directives from a sample of emergency department (ED) patients' MOLST forms. PROCEDURES: MOLST forms that accompanied 100 patients who were transported to an ED were collected and their contents analyzed. Data categories included age, gender, if the patient completed the form for themselves, medical orders for life-sustaining treatment including intubation, ventilation, artificial nutrition, artificial fluids or other treatment, and wishes for future hospitalization or transfer...
September 27, 2016: Journal of the American Medical Directors Association
Ann C Long, Erin K Kross, J Randall Curtis
PURPOSE OF REVIEW: Family-centered outcomes during and after critical illness assess issues that are most important to family members. An understanding of family-centered outcomes is necessary to support the provision of family-centered care and to foster development of interventions to improve care and communication in the ICU. RECENT FINDINGS: Current family-centered outcomes in critical care include satisfaction with care, including end-of-life care, symptoms of psychological distress, and health-related quality of life...
September 28, 2016: Current Opinion in Critical Care
Zahra Rahemi, Christine Lisa Williams
This integrative review was conducted to examine the evidence for understanding diversity in end-of-life preferences among older adults of underrepresented groups. Findings from 21 studies were critically examined, grouped, and compared across studies, populations, and settings. Five major themes emerged: advance directives, hospice and palliative care, communication, knowledge and information, and home and family. Despite multidisciplinary attention, content and methodological limitations narrowed understanding of what matters most to these groups when making decisions at end of life...
September 26, 2016: ANS. Advances in Nursing Science
Clare Gardiner, Christine Ingleton, Tony Ryan, Sue Ward, Merryn Gott
BACKGROUND: It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. AIM: To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs...
September 26, 2016: Palliative Medicine
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