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End of life discussions

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https://www.readbyqxmd.com/read/28337510/-seven-years-of-the-national-action-league-for-people-with-rare-diseases-namse-a-success-story
#1
Alexandra Halbach, Birgit Schnieders, Karin Knufmann-Happe
It is estimated that four million people in Germany are living with a rare disease; in the EU, approximately 30 million people are affected. All rare diseases are chronic, linked to invalidity and/or restricted life expectancy, and their symptoms are often already manifest in childhood. Some 80% of rare diseases are genetically determined; they can rarely be cured. Furthermore, the pathogenesis of many rare diseases is unknown.In a move to ameliorate the situation of persons with rare diseases, the National Action League for People with Rare Diseases (NAMSE) published the National Plan of Action for People with Rare Diseases containing 52 measures that aim to achieve the desired improvements...
March 23, 2017: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
https://www.readbyqxmd.com/read/28334740/patient-experience-of-primary-care-and-advance-care-planning-a-multicentre-cross-sectional-study-in-japan
#2
Takuya Aoki, Jun Miyashita, Yosuke Yamamoto, Tatsuyoshi Ikenoue, Morito Kise, Yasuki Fujinuma, Shingo Fukuma, Miho Kimachi, Sayaka Shimizu, Shunichi Fukuhara
Background.: Advance care planning (ACP) is becoming increasingly important in the primary care setting because of its positive impact on the end-of-life care. Objective.: We aimed to investigate the relationship between patient experience of primary care and ACP. Methods.: This cross-sectional study was conducted in 28 primary care clinics in Japan. We assessed patient experience of primary care using a Japanese version of Primary Care Assessment Tool (JPCAT), which comprises six domains: first contact, longitudinality, coordination, comprehensiveness (services available), comprehensiveness (services provided) and community orientation...
January 30, 2017: Family Practice
https://www.readbyqxmd.com/read/28330379/patient-self-defined-goals
#3
Sandra Ellen Schellinger, Eric Worden Anderson, Monica Schmitz Frazer, Cindy Lynn Cain
This research, a descriptive qualitative analysis of self-defined serious illness goals, expands the knowledge of what goals are important beyond the physical-making existing disease-specific guidelines more holistic. Integration of goals of care discussions and documentation is standard for quality palliative care but not consistently executed into general and specialty practice. Over 14 months, lay health-care workers (care guides) provided monthly supportive visits for 160 patients with advanced heart failure, cancer, and dementia expected to die in 2 to 3 years...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28329829/-end-of-life-care-i-m-not-going-to-worry-about-that-yet-health-literacy-gaps-and-end-of-life-planning-among-elderly-dialysis-patients
#4
Keren Ladin, Katie Buttafarro, Emily Hahn, Susan Koch-Weser, Daniel E Weiner
Purpose: Between 2000 and 2012, the incident dialysis population in the United States increased by nearly 60%, most sharply among adults 75 years and older. End-of-life (EOL) conversations among dialysis patients are associated with better patient-centered outcomes and lower use of aggressive interventions in the last month of life. This study examined how health literacy may affect engagement, comprehension, and satisfaction with EOL conversations among elderly dialysis patients. Design and Methods: Qualitative/descriptive study with semi-structured interviews about health literacy, EOL conversations, and goals of care with 31 elderly dialysis patients at 2 centers in Boston...
March 10, 2017: Gerontologist
https://www.readbyqxmd.com/read/28325745/aid-in-dying-laws-and-the-physician-s-duty-to-inform
#5
Mara Buchbinder
On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option...
March 21, 2017: Journal of Medical Ethics
https://www.readbyqxmd.com/read/28324205/levels-of-intervention-how-are-they-used-in-quebec-hospitals
#6
Marjolaine Frenette, Jocelyne Saint-Arnaud, Karim Serri
In order to promote better practices and communication around end-of-life decision-making, several Canadian hospitals in the province of Quebec have developed a tool called "Levels of Intervention" (LOI). No work to date has been published demonstrating improvement since these forms were implemented. The purpose of the present study was to obtain information about the use of LOI forms across Quebec hospitals and to identify gaps in practice as well as areas for improvement. A retrospective study was undertaken of 299 charts of patients who had died in three Quebec hospitals with a LOI ordered...
March 21, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28322074/speaking-a-different-language
#7
Anne G Ciriello, Zoelle B Dizon, Tessie W October
BACKGROUND: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. AIM: To compare language used by PC team and ICU physicians during family conferences. DESIGN: A retrospective cohort review of ICU family conferences with and without the PC team. SETTING: Forty-four bed pediatric ICU in a tertiary medical center...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28321211/first-foods-and-gut-microbes
#8
Martin F Laursen, Martin I Bahl, Kim F Michaelsen, Tine R Licht
The establishment of the human gut microbiota in early life has been associated with later health and disease. During the 1st months after birth, the microbial composition in the gut is known to be affected by the mode of delivery, use of antibiotics, geographical location and type of feeding (breast/formula). Consequently, the neonatal period and early infancy has attracted much attention. However, after this first period the gut microbial composition continues to develop until the age of 3 years, and these 1st years have been designated "a window of opportunity" for microbial modulation...
2017: Frontiers in Microbiology
https://www.readbyqxmd.com/read/28320024/-therapeutic-decisions-concerning-severe-neurological-diseases-and-at-the-end-of-life
#9
Christoph Burkhard Lücking
Modern medicine increasingly enables survival of life-threatening diseases. On the other side, however, especially in Neurology, the questions have to be addressed how intensive the initial treatment should be and how to deal with residual states when severe functional or cognitive deficits are expected. In these cases, it is not only important to decide which medical measures are appropriate for the patient, but also whether, given the prognosis, the patient would agree with the suggested measures. This article first describes the basis for each medical action, i...
March 2017: Fortschritte der Neurologie-Psychiatrie
https://www.readbyqxmd.com/read/28301702/space-for-the-prisoner-s-point-of-view
#10
Laura Haupt
The lead article in this issue discusses a potentially free metaphorical space-that of decision-making-within the confines, tangible and intangible, of life in jail or prison. By interviewing prisoner-participants from six clinical studies, Paul Christopher and colleagues sought to find out how these men and women would answer open-ended questions about their decision to enroll in the research. What the interviewers heard was that none saw themselves as having been inappropriately pressured to do so. In fact, a significant percentage of the prisoners described being dissuaded from participating in the studies...
March 2017: Hastings Center Report
https://www.readbyqxmd.com/read/28294576/end-of-life-care-where-do-cancer-patients-want-to-die-a-systematic-review
#11
REVIEW
Jonas Nilsson, Carl Blomberg, Georg Holgersson, Tobias Carlsson, Michael Bergqvist, Stefan Bergström
The importance to die at preferred death place is substantial among terminally ill cancer patients. Previously, several studies have investigated this issue, but no systematic review has been made for many years. This systematic review was made in order to investigate preferred death place among cancer patients. A systematic search was made in PubMed library and a total of 399 articles were found, of which 23 were eligible and included in the review. Preference of home death averaged by 59.9% (39.7-100%) across all studies...
March 13, 2017: Asia-Pacific Journal of Clinical Oncology
https://www.readbyqxmd.com/read/28294479/understanding-advance-care-planning-within-the-south-asian-community
#12
Patricia D Biondo, Rashika Kalia, Rooh-Afza Khan, Nadia Asghar, Cyrene Banerjee, Debbie Boulton, Nancy Marlett, Svetlana Shklarov, Jessica E Simon
BACKGROUND: Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. OBJECTIVE: To explore perspectives of South Asian community members towards ACP...
March 10, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28288954/content-usability-and-utilization-of-plain-language-in-breast-cancer-mobile-phone-apps-a-systematic-analysis
#13
Tamar Ginossar, Sayyed Fawad Ali Shah, Andrew J West, Joshua M Bentley, Charlene A Caburnay, Matthew W Kreuter, Anita Y Kinney
BACKGROUND: Breast cancer is one of the leading contributors to preventable illness and death among women. Although mobile phone apps provide unprecedented opportunity to engage women along the cancer continuum, little is known about the availability, content, and usability of breast cancer mobile phone apps. OBJECTIVE: This study analyzed the content and adherence to literate design standards of all breast cancer-related apps available on the App Store and Google Play, as well as the relationship between their content, user ratings, and price...
March 13, 2017: JMIR MHealth and UHealth
https://www.readbyqxmd.com/read/28288592/transfer-of-manualized-short-term-psychodynamic-psychotherapy-stpp-for-social-anxiety-disorder-into-clinical-practice-results-from-a-cluster-randomised-controlled-trial
#14
Jörg Wiltink, Christian Ruckes, Jürgen Hoyer, Falk Leichsenring, Peter Joraschky, Frank Leweke, Karin Pöhlmann, Manfred E Beutel
BACKGROUND: Despite growing evidence for manualized psychodynamic treatments, there is a lack of studies on their transfer to routine practice. This is the first study to examine the effects of an additional training in manualized Short Term Psychodynamic Psychotherapy (STPP) on the outcome in routine psychotherapy for social anxiety disorder (SAD). The study is an extension to a large RCT comparing STPP to Cognitive-Behavioral Therapy of SAD. METHODS: The manualized treatment was designed for a time limited approach with 25 individual sessions of STPP over 6 months...
March 14, 2017: BMC Psychiatry
https://www.readbyqxmd.com/read/28283409/topics-in-practice-management-integrating-advance-care-planning-into-practice
#15
REVIEW
Laura E Dingfield, Joshua B Kayser
Advanced respiratory diseases progress over time and often lead to death. As their condition worsens, patients may lose medical decision making ability. Advance care planning (ACP) is a process in which patients receive information about their diagnosis and prognosis; discuss values, goals and fears; articulate preferences about life-sustaining treatments and end-of-life care; and appoint a surrogate medical decision maker. This process may result in written documentation of patient preferences, or appointment of a health care power of attorney (HCPOA)...
March 7, 2017: Chest
https://www.readbyqxmd.com/read/28279073/end-of-life-care-and-discussions-in-japanese-geriatric-health-service-facilities
#16
Asako Kanoh, Yoshiyuki Kizawa, Satoru Tsuneto, Shoji Yokoya
BACKGROUND: Geriatric health service facilities (GHSFs) play important roles as intermediate care facilities for elderly individuals temporarily when they need rehabilitation before returning home. However, the number of residents spending their end-of-life (EOL) period in such facilities is increasing. To improve the quality of EOL care, end-of-life discussions (EOLDs) are recommended by some guidelines and studies. AIM: This study aimed to clarify the current practice of EOL care and EOLDs in GHSFs in Japan...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28278033/status-of-waste-tyres-and-management-practice-in-botswana
#17
Daniel Mmereki, Bontle Machola, Kentlafetse Mokokwe
Waste tyres (WTs) are becoming a significant environmental, economical and technological challenge due to their high contents of combustible composition and potential for valuable materials and energy resources. Fewer studies in developing and even developed countries have been carried out to assess the challenges regarding waste tyres management, and suggested the best alternative solutions for managing this waste stream. While developed countries made progress in waste tyres management needs by implementing more efficient innovative recovery and recycling methods, and restrictive regulations regarding the management of used tyres, in many developing countries the management of waste tyres has not received adequate interest, and the processing, treatment and disposal of waste tyre is still nascent...
February 22, 2017: Journal of the Air & Waste Management Association
https://www.readbyqxmd.com/read/28277261/building-a-palliative-radiation-oncology-program-from-bedside-to-b-e-d
#18
Mark J Stavas, Jonathan D Pagan, Sumeeta Varma, Benjamin Li, Lisa A Kachnic
A growing body of evidence supports the integration of palliative care with standard cancer treatments. In these situations, patients often experience a better quality of life, better quality of care, decreased cost, and, in some cases, improved survival with the addition of palliative care services to traditional treatment pathways. In this manuscript, we explore the integration of radiation oncology at palliative care. First, we discuss the impetus for change at Vanderbilt University and the inception of Vanderbilt's inpatient Palliative Radiation Oncology Service at Vanderbilt...
September 13, 2016: Practical Radiation Oncology
https://www.readbyqxmd.com/read/28275444/the-impact-of-thailand-s-public-health-response-to-the-hiv-epidemic-1984-2015-understanding-the-ingredients-of-success
#19
EDITORIAL
Taweesap Siraprapasiri, Sumet Ongwangdee, Patchara Benjarattanaporn, Wiwat Peerapatanapokin, Mukta Sharma
INTRODUCTION: Thailand has been heralded as a global leader in HIV prevention and treatment, and its experience with the HIV/AIDS epidemic holds valuable lessons for public health. This paper documents Thailand's response to its HIV epidemic from the late 1980s until today, and analyses its epidemiological impact (incidence and mortality). We discuss the association between the trajectory of HIV incidence and mortality rates over time, and the programmatic investments, policies and interventions that were implemented in the last three decades...
November 28, 2016: Journal of Virus Eradication
https://www.readbyqxmd.com/read/28274216/primary-care-physicians-educational-needs-and-learning-preferences-in-end-of-life-care-a-focus-group-study-in-the-uk
#20
Lucy Ellen Selman, Lisa Jane Brighton, Vicky Robinson, Rob George, Shaheen A Khan, Rachel Burman, Jonathan Koffman
BACKGROUND: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation...
March 9, 2017: BMC Palliative Care
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