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end of life decision making

Edwina A Brown, Frederic O Finkelstein, Osasuyi U Iyasere, Alan S Kliger
Management of older people on dialysis requires focus on the wider aspects of aging as well as dialysis. Almost all frail and older patients receiving dialysis will default to in-center hemodialysis, although the availability of assisted peritoneal dialysis enables dialysis at home. As with any disease management decision, patients approaching end-stage renal disease need all the appropriate facts about their prognosis, the natural history of their disease without dialysis, and the resulting outcomes and complications of the different dialysis modalities...
October 20, 2016: Kidney International
Erin Traister, Kim L Larson, Dell Hagwood
PURPOSE: We sought to understand decision making, family involvement, and cultural factors that influence palliative care for Guatemalans. DESIGN: A qualitative descriptive study was conducted in Guatemala to explore palliative care experiences among seven participants. FINDINGS: The overarching theme was Relief from Suffering, reinforced by three support systems: the family, community rezadora, and priest. The family made decisions and provided physical care...
October 21, 2016: Journal of Transcultural Nursing: Official Journal of the Transcultural Nursing Society
Olga Tursunov, Nathan I Cherny, Freda DeKeyser Ganz
PURPOSE/OBJECTIVES: To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. DESIGN: Descriptive comparative study.
. SETTING: Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. SAMPLE: A convenience sample of 34 family members of dying patients receiving palliative sedation...
November 1, 2016: Oncology Nursing Forum
Magnolia Cardona-Morrell, Gustavo Benfatti-Olivato, Jesse Jansen, Robin M Turner, Diana Fajardo-Pulido, Ken Hillman
OBJECTIVE: To describe the range of decision aids (DAs) available to enable informed choice for older patients at the end of life and assess their effectiveness or acceptability. METHODS: Search strategy covered PubMed, Scopus, Ovid MEDLINE, EMBASE, EBM Reviews, CINAHL and PsycInfo between 1995 and 2015. The quality criteria framework endorsed by the International Patient Decision Aids Standards (IPDAS) was used to assess usefulness. RESULTS: Seventeen DA interventions for patients, their surrogates or health professionals were included...
October 11, 2016: Patient Education and Counseling
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
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
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
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
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
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
Emma Beecham, Linda Oostendorp, Joanna Crocker, Paula Kelly, Andrew Dinsdale, June Hemsley, Jessica Russell, Louise Jones, Myra Bluebond-Langner
BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. OBJECTIVE: To investigate how parents of children and young people with LLCs approach and experience ACP. METHODS: Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died...
September 26, 2016: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
Chloe Shaw, Elizabeth Stokoe, Katie Gallagher, Narendra Aladangady, Neil Marlow
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed...
September 25, 2016: Sociology of Health & Illness
I H Zaal-Schuller, D L Willems, F V P M Ewals, J B van Goudoever, M A de Vos
BACKGROUND: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. AIMS: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. METHODS: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years...
September 22, 2016: Research in Developmental Disabilities
Celia Hoi Yan Chan, Hi Po Bobo Lau, Michelle Yi Jun Tam, Ernest Hung Yu Ng
STUDY QUESTION: What is the relationship between decisional conflict, decisional regret and psychological well-being in women following unsuccessful IVF cycles? SUMMARY ANSWER: The mediating effect of decisional regret on the relationship between decisional conflict and fertility-related quality of life (FRQOL) has been found to be moderated by the availability (versus absence) of frozen embryos after an unsuccessful IVF cycle. WHAT IS KNOWN ALREADY: Infertility treatment is marked by its open-ended nature...
September 22, 2016: Human Reproduction
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