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End of life discussions

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https://www.readbyqxmd.com/read/29161396/demands-and-requests-for-inappropriate-or-inadvisable-treatments-at-the-end-of-life-what-do-you-do-at-2-o-clock-in-the-morning-when-%C3%A2
#1
L McCrossan, R Siegmeth
In an era when healthcare has become increasingly complex and patient expectations are higher than ever before, we can find the decision-making process for patients, potentially at the end of their lives, increasingly difficult. In the shift from paternalism to patient choice, we can struggle to know what to do when faced with a patient, their family, or both requesting or demanding inadvisable, inappropriate, or futile treatments. It can feel as if we are being asked to subject patients to intrusions and interventions that 'just feel wrong'...
December 1, 2017: British Journal of Anaesthesia
https://www.readbyqxmd.com/read/29159708/mainstreaming-genetics-in-palliative-care-barriers-and-suggestions-for-clinical-genetic-services
#2
A Dearing, N Taverner
Palliative healthcare professionals (PHCPs) frequently do not refer their eligible patients for genetic testing. After the death of the affected individual, clinically relevant information for family members is lost. In previous research, PHCPs stated that the end-of-life setting is not appropriate to discuss genetic issues. It is unclear if this has changed due to increasing awareness of genetics in the media and efforts to mainstream genetic testing. Semi-structured interviews of PHCPs were analysed by thematic analysis...
November 20, 2017: Journal of Community Genetics
https://www.readbyqxmd.com/read/29156918/challenges-and-ethical-issues-in-the-course-of-palliative-care-management-for-people-living-with-advanced-neurologic-diseases
#3
Varun Sreenivasan, Christa O'Hana S Nobleza
In the recent years, there has been an increase in awareness with regards to the role of palliative care (PC) in management of neurologic diseases. In 1996, the need to incorporate PC in the care for patients with neurologic conditions was recognized by the American Academy of Neurology (AAN) Ethics and Humanities Subcommittee. The gaps in research, education and the ability to deliver adequate PC were then acknowledged by the National Academy of Sciences with their publication of "Approaching death: improving care at the end of life" and most recently, continued goals in improving PC was highlighted by another recent publication "Dying in America: improving quality and honoring individual preferences near the end of life"...
October 19, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/29156917/advance-care-planning-for-patients-with-advanced-neurology-diseases
#4
Ka-Chi Cheung, Vikki Wai-Kee Lau, Ka-Chun Un, Man-Sheung Wong, Kwok-Ying Chan
BACKGROUND: Advanced neurology diseases including motor neuron disease (MND) are usually progressive life-limiting illness and could be devastating for patients, families and caregivers. Although medical technologies, such as enteral feeding and non-invasive ventilation, may prolong life expectancy of the patients, their utilization prompts important ethical questions in regard to their quality of life (QoL). Little attention had been paid on how ACP practice would practically help with patients suffering from different neurology diseases...
October 13, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/29156901/patient-centered-family-meetings-in-palliative-care-a-quality-improvement-project-to-explore-a-new-model-of-family-meetings-with-patients-and-families-at-the-end-of-life
#5
Christine R Sanderson, Philippa J Cahill, Jane L Phillips, Anne Johnson, Elizabeth A Lobb
BACKGROUND: Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. METHODS: This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team...
September 29, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/29156248/the-symbolic-violence-of-outbreak-a-mixed-methods-quasi-experimental-impact-evaluation-of-social-protection-on-ebola-survivor-wellbeing
#6
Eugene T Richardson, J Daniel Kelly, Osman Sesay, Michael D Drasher, Ishaan K Desai, Raphael Frankfurter, Paul E Farmer, Mohamed Bailor Barrie
Despite over 28,000 reported cases of Ebola virus disease (EVD) in the 2013-16 outbreak in West Africa, we are only beginning to trace the complex biosocial processes that have promoted its spread. Important questions remain, including the effects on survivors of clinical sequelae, loss of family and livelihood, and other psychological and social trauma. Another poorly understood question is what effect social protection and job creation programs have had on survivors' wellbeing. Several clinical and social protection programs have been developed to respond to the needs of EVD survivors; however, little in the way of impact evaluation has taken place...
November 11, 2017: Social Science & Medicine
https://www.readbyqxmd.com/read/29155291/measuring-the-psychosocial-dimensions-of-quality-of-life-in-advanced-cancer-patients-psychometrics-of-the-german-quality-of-life-at-the-end-of-life-cancer-psychosocial-qual-ec-p-questionnaire
#7
Britta Grünke, Rebecca Philipp, Sigrun Vehling, Katharina Scheffold, Martin Härter, Karin Oechsle, Frank Schulz-Kindermann, Anja Mehnert, Christopher Lo
CONTEXT: Quality of life is a central focus of care in advanced cancer. Specialized instruments, such as the QUAL-EC, may be useful to assess psychosocial issues associated with quality of life unique to this population. OBJECTIVES: To evaluate the measurement of the psychosocial dimensions of quality of life using the German translation of the QUAL-EC-Cancer-Psychosocial Questionnaire (QUAL-EC-P), including factor structure and psychometrics. METHODS: 183 patients with advanced cancer from the University Medical Center Hamburg-Eppendorf and University Medical Center Leipzig completed the QUAL-EC-P...
November 15, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29151362/elimination-of-schistosomiasis-the-tools-required
#8
REVIEW
Robert Bergquist, Xiao-Nong Zhou, David Rollinson, Jutta Reinhard-Rupp, Katharina Klohe
BACKGROUND: Historically, the target in the schistosomiasis control has shifted from infection to morbidity, then back to infection, but now as a public health problem, before moving on to transmission control. Currently, all endemic countries are encouraged to increase control efforts and move towards elimination as required by the World Health Organization (WHO) roadmap for the global control of the neglected tropical diseases (NTDs) and the WHA65.21 resolution issued by the World Health Assembly...
November 20, 2017: Infectious Diseases of Poverty
https://www.readbyqxmd.com/read/29149849/biobanking-in-israel-2016-17-expressed-perceptions-versus-real-life-enrollment
#9
Gideon Koren, Daniella Beller, Daphna Laifenfeld, Iris Grossman, Varda Shalev
BACKGROUND: As part of the preparations to establish a population-based biobank in a large Israeli health organization, we aimed to investigate through focus groups the knowledge, perceptions and attitudes of insured Israelis, toward biobanking, and then, after input from focus groups' participants, to empirically assess the impact of a revised recruitment process on recruitment rates. METHODS: 1) Six Focus group discussions were conducted (n = 10 per group) with individuals who had routine blood laboratory tests taken in the last 2 years...
November 17, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/29148907/impact-of-patients-expressed-wishes-on-their-surrogate-decision-makers-preferred-decision-making-roles-in-japan
#10
Shuji Tsuda, Mieko Nakamura, Shigeru Aoki, Hiroshi Ono, Mitsuru Takagi, Hiroki Ohashi, Junichiro Miyachi, Yoshinori Matsui, Toshiyuki Ojima
BACKGROUND: Home medical care (HMC) patients and their families are expected to prepare for end-of-life decision making. OBJECTIVE: We investigated the decision readiness of HMC patients and their family surrogates. DESIGN: Cross-sectional survey. SETTING/SUBJECTS: We collected data from dyads, consisting of a HMC patient aged 65 years or older and a family member of the patient, recruited at four Japanese primary care clinics from January 2016 to November 2016...
November 17, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29147137/preventing-disability-in-inflammatory-bowel-disease
#11
REVIEW
Patrick B Allen, Corinne Gower-Rousseau, Silvio Danese, Laurent Peyrin-Biroulet
Disability is a common worldwide health challenge and it has been increasing over the past 3 decades. The treatment paradigm has changed dramatically in inflammatory bowel diseases (IBDs) from control of symptoms towards full control of disease (clinical and endoscopic remission) with the goal of preventing organ damage and disability. These aims are broadly similar to rheumatoid arthritis and multiple sclerosis. Since the 1990s, our attention has focused on quality of life in IBD, which is a subjective measure...
November 2017: Therapeutic Advances in Gastroenterology
https://www.readbyqxmd.com/read/29145869/a-mixed-methods-analysis-of-quality-of-life-among-late-life-patients-diagnosed-with-chronic-illnesses
#12
Monica S Frazer, Patrick Mobley
BACKGROUND: Quality of life (QOL) is an important consideration for people living with advancing chronic conditions. Palliative care providers speak about how, despite physical decline in late life, many patients report growth and meaning in other domains. This mixed methods study uses QOL survey responses to explore domain trajectories and interview data to explore how patients with advancing chronic conditions experience distinct QOL domains. METHODS: The study sample includes 156 now-deceased participants who completed the FACIT-Pal quarterly, and 40 (10 now-deceased) participants who discussed QOL in an interview...
November 16, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/29142376/intensive-care-nurses-attitude-on-palliative-and-end-of-life-care
#13
Swagata Tripathy, Pragyan K Routray, Jagdish C Mishra
Background: Intensive Care Unit (ICU) nurses have a vital role in the implementation of end of life (EOL) care. There is limited data on the attitude of ICU nurses toward EOL and palliation. Aim: This study aimed to investigate knowledge, attitude, and beliefs of intensive care nurses in eastern India toward EOL. Materials and Methods: A self-administered questionnaire was distributed to delegates in two regional critical care nurses' training programs...
October 2017: Indian Journal of Critical Care Medicine
https://www.readbyqxmd.com/read/29140974/physician-patient-communication-about-overactive-bladder-results-of-an-observational-sociolinguistic-study
#14
Steven R Hahn, Pamela Bradt, Kathleen A Hewett, Daniel B Ng
INTRODUCTION: Overactive bladder (OAB) and urinary incontinence are common problems that have significant impact on quality of life (QOL). Less than half of sufferers seek help from their physicians; many who do are dissatisfied with treatment and their physicians' understanding of their problems. Little is known about the sociolinguistic characteristics of physician-patient communication about OAB in community practice. METHODS: An IRB-approved observational sociolinguistic study of dialogues between patients with OAB and treating physicians was conducted...
2017: PloS One
https://www.readbyqxmd.com/read/29135524/a-palliative-approach-for-heart-failure-end-of-life-care
#15
Jane Maciver, Heather J Ross
PURPOSE OF REVIEW: The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care. RECENT FINDINGS: North American and European heart failure societies recommend the integration of palliative care into heart failure programs. Advance care planning, shared decision-making, routine measurement of symptoms and quality of life and specialist palliative care at heart failure EOL are identified as key components to an effective heart failure palliative care program...
November 10, 2017: Current Opinion in Cardiology
https://www.readbyqxmd.com/read/29133515/-rather-one-more-chemo-than-one-less%C3%A2-oncologists-and-oncology-nurses-reasons-for-aggressive-treatment-of-young-adults-with-advanced-cancer
#16
Katsiaryna Laryionava, Pia Heußner, Wolfgang Hiddemann, Eva C Winkler
BACKGROUND: Empirical research demonstrates that there is a tendency to administer tumor-directed therapy to patients with advanced cancer close to death, especially if they are young. The aim of this qualitative study was to understand oncologists' treatment decisions and oncology nurses' perception of these decisions in young adult patients and to investigate the extent to which young age was a factor in cancer treatment decisions. MATERIALS AND METHODS: We conducted 29 face-to-face interviews with oncologists and oncology nurses at the Department of Hematology and Oncology at the University Hospital in Munich, Germany...
November 13, 2017: Oncologist
https://www.readbyqxmd.com/read/29133445/conceptualizing-the-origin-of-life-in-terms-of-evolution
#17
REVIEW
N Takeuchi, P Hogeweg, K Kaneko
In this opinion piece, we discuss how to place evolution in the context of origin-of-life research. Our discussion starts with a popular definition: 'life is a self-sustained chemical system capable of undergoing Darwinian evolution'. According to this definition, the origin of life is the same as the origin of evolution: evolution is the 'end' of the origin of life. This perspective, however, has a limitation, in that the ability of evolution in and of itself is insufficient to explain the origin of life as we know it, as indicated by Spiegelman's and Lincoln and Joyce's experiments...
December 28, 2017: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/29132340/what-do-japanese-residents-learn-from-treating-dying-patients-the-implications-for-training-in-end-of-life-care
#18
Kazuko Arai, Takuya Saiki, Rintaro Imafuku, Chihiro Kawakami, Kazuhiko Fujisaki, Yasuyuki Suzuki
BACKGROUND: How medical residents' experiences with care for dying patients affect their emotional well-being, their learning outcomes, and the formation of their professional identities is not fully understood. We examine residents' emotional states and learning occurring during the provision of care to dying patients and specifically discuss the impact of providing end-of-life (EOL) care on professional identity formation. METHODS: Semi-structured interviews were conducted with 13 residents who had graduated in the last 3 to 5 years...
November 13, 2017: BMC Medical Education
https://www.readbyqxmd.com/read/29130538/-what-if-this-is-my-chance-to-save-my-life-a-semi-structured-interview-study-on-the-motives-and-experiences-of-esrd-patients-who-engaged-in-public-solicitation-of-a-living-kidney-donor
#19
Mathilde C Pronk, Dorthe Slaats, Willij C Zuidema, Medard T Hilhorst, Frank J M F Dor, Michiel Betjes, Willem Weimar, Jacqueline van de Wetering, Emma K Massey
The increase of patients using public solicitation (PS) to find a living kidney donor has generated a debate about the ethical complexities of PS. To investigate why patients engaged in PS and what they experienced during PS we conducted semi-structured interviews with 20 Dutch end-stage renal disease patients who had publicly solicited a living donor. Transcipts were thematically analyzed. We identified ten themes on patients' considerations preceding PS: cautiousness in discussing living donation within social network; reluctance to accept a kidney from loved ones; rejection/withdrawal of related donor candidates; moral objections to black market organs/paid donation; the ease of social media; encouraged by others; ends justyfying the means; despair and urge to take action; public disclosure of vulnerability; fear of being (perceived to be) selfish...
November 12, 2017: Transplant International: Official Journal of the European Society for Organ Transplantation
https://www.readbyqxmd.com/read/29130418/caregiver-quality-of-life-in-advanced-cancer-qualitative-results-from-a-trial-of-early-palliative-care
#20
Julie McDonald, Nadia Swami, Ashley Pope, Sarah Hales, Rinat Nissim, Gary Rodin, Breffni Hannon, Camilla Zimmermann
BACKGROUND: Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. AIM: To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. DESIGN: Qualitative grounded theory study...
November 1, 2017: Palliative Medicine
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