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Surrogate decision maker

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https://www.readbyqxmd.com/read/28930710/at-the-intersection-of-faith-culture-and-family-dynamics-a-complex-case-of-refusal-of-treatment-for-childhood-cancer
#1
Amy E Caruso Brown
Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child's maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment. First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally...
2017: Journal of Clinical Ethics
https://www.readbyqxmd.com/read/28922998/risk-preferences-in-surrogate-decision-making
#2
Eleonore Batteux, Eamonn Ferguson, Richard J Tunney
There is growing evidence that decisions made on behalf of other people differ from the decisions we make for ourselves because we are less affected by the subjective experience of their outcome. As a result, the decisions we make for other people can be more optimal. This experiment investigated surrogate decision making using a probability discounting task where participants made choices between risky and sure options. Psychological distance between the decision maker and the recipient was manipulated by having participants make decisions for themselves, their friend, and another unknown participant...
July 2017: Experimental Psychology
https://www.readbyqxmd.com/read/28915184/wide-disagreement-between-alternative-assessments-of-premorbid-physical-activity-subjective-patient-and-surrogate-reports-and-objective-smartphone-data
#3
Samuel Gluck, Matthew J Summers, Thomas P Goddard, Alice Andrawos, Natalie C Smith, Kylie Lange, Theodore J Iwashyna, Adam M Deane
OBJECTIVES: Surrogate-decision maker and patient self-reported estimates of the distances walked prior to acute illness are subjective and may be imprecise. It may be possible to extract objective data from a patient's smartphone, specifically, step and global position system data, to quantify physical activity. The objectives were to 1) assess the agreement between surrogate-decision maker and patient self-reported estimates of distance and time walked prior to resting and daily step-count and 2) determine the feasibility of extracting premorbid physical activity (step and global position system) data from critically ill patients...
October 2017: Critical Care Medicine
https://www.readbyqxmd.com/read/28846992/improving-research-enrollment-of-severe-burn-patients
#4
Anne M Lachiewicz, Felicia N Williams, Shannon S Carson, Jessica M Trexler, Carrie A Nielsen, David van Duin, David J Weber, Shannon D Williams, Samuel W Jones, Bruce A Cairns
Enrolling severely burn injured patients into prospective research studies poses specific challenges to investigators. The authors describe their experience of recruiting adults with ≥20% TBSA burns or inhalation injury admitted to a single academic burn unit into observational research with minimally invasive specimen collection. The authors outline iterative changes that they made to their recruitment processes in response to perceived weaknesses leading to delays in enrollment. The primary outcome was the change in days to consent for enrolled patients or cessation of recruitment for nonenrolled patients before and after the interventional modifications...
September 2017: Journal of Burn Care & Research: Official Publication of the American Burn Association
https://www.readbyqxmd.com/read/28840485/how-surrogates-decide-a-secondary-data-analysis-of-decision-making-principles-used-by-the-surrogates-of-hospitalized-older-adults
#5
Rohit Devnani, James E Slaven, Gabriel T Bosslet, Kianna Montz, Lev Inger, Emily S Burke, Alexia M Torke
BACKGROUND: Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. OBJECTIVES: We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so...
August 24, 2017: Journal of General Internal Medicine
https://www.readbyqxmd.com/read/28813240/when-does-therapeutic-misconception-affect-surrogates-or-subjects-decision-making-about-whether-to-participate-in-dementia-research
#6
Laura B Dunn, Barton W Palmer
"Therapeutic misconception" (TM) refers to inappropriate assumptions and beliefs on the part of research participants regarding key distinctions between the purpose, methods, intended benefits, and potential disadvantages of research compared to those of clinical care. Despite an extensive literature describing TM across varied types of research and populations, minimal work has addressed TM in the context of dementia research. This is a serious gap, for several reasons: people with dementia are at significant risk of diminished capacity; surrogate decision makers are typically asked to provide consent on behalf of the person with dementia; and available treatments for dementia are quite limited...
July 1, 2017: AMA Journal of Ethics
https://www.readbyqxmd.com/read/28805132/evaluation-of-the-decisional-fatigue-scale-among-surrogate-decision-makers-of-the-critically-ill
#7
Ronald L Hickman, Grant A Pignatiello, Sadia Tahir
Intense emotional distress and impaired information processing have been implicated in reducing a surrogate decision maker's ability to formulate informed health care decisions for a critically ill patient. The heightened intensity of negative emotions, mental effort, and impaired judgment is consistent with the manifestation of decision fatigue. The aim of this article is to describe the validity and reliability of the Decision Fatigue Scale (DFS) among surrogate decision makers of the critically ill. A convenience sample of 101 surrogate decision makers were administered the DFS and a battery of psychosocial instruments at two time points...
August 1, 2017: Western Journal of Nursing Research
https://www.readbyqxmd.com/read/28795860/access-to-palliative-care-consultation-and-advance-care-planning-for-adults-with-high-risk-leukemia
#8
Ashley T Freeman, William A Wood, Alexandra Fox, Laura C Hanson
BACKGROUND: Although strong evidence supports early palliative care (PC) and consistent advance care planning (ACP) for patients with poor-prognosis Stage IV solid tumors, best practice standards have not been established for hematologic malignancies. Our primary objective was to describe current access to specialty PC consultation and ACP for inpatients with high-risk leukemia. Secondary objectives were to describe components of ACP and PC practices. METHODS: We enrolled all patients with high-risk leukemia (acute leukemia ≥65 years or relapsed leukemia >18 years) admitted to the University of North Carolina Cancer Hospital from October 1, 2015, to August 1, 2016...
August 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28766384/-did-i-make-the-right-decision-the-difficult-and-unpredictable-journey-of-being-a-surrogate-decision-maker-for-a-person-living-with-dementia
#9
Deirdre Fetherstonhaugh, Linda McAuliffe, Christopher Shanley, Michael Bauer, Elizabeth Beattie
Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person - a surrogate decision maker - to make decisions on their behalf. It is important - especially with the increasing prevalence of dementia - that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/28756646/patient-and-surrogate-views-of-community-consultation-for-emergency-research
#10
Alexandra E Fehr, Victoria M Scicluna, Rebecca D Pentz, Adrianne N Haggins, Neal W Dickert
OBJECTIVE: Pre-trial community consultation (CC) is required for emergency research conducted under an exception from informed consent (EFIC) in the United States. CC remains controversial and challenging, and minimal data exist regarding the views of individuals enrolled in EFIC trials on this process. It is important to know whether participants perceive CC to be meaningful and, if so, whom they believe should be consulted. METHODS: We conducted a secondary analysis of data from two studies interviewing patients and surrogates of two recent EFIC trials (PEER-RAMPART and PEER-ProTECT)...
July 30, 2017: Academic Emergency Medicine: Official Journal of the Society for Academic Emergency Medicine
https://www.readbyqxmd.com/read/28716978/how-do-clinicians-prepare-family-members-for-the-role-of-surrogate-decision-maker
#11
Thomas V Cunningham, Leslie P Scheunemann, Robert M Arnold, Douglas White
PURPOSE: Although surrogate decision-making (SDM) is prevalent in intensive care units (ICUs) and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. SUBJECTS AND METHODS: We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death...
July 17, 2017: Journal of Medical Ethics
https://www.readbyqxmd.com/read/28716615/development-of-a-protocol-for-successful-palliative-care-consultation-in-population-of-patients-receiving-mechanical-circulatory-support
#12
Shilpee Sinha, Carey Belcher, Alexia Torke, Joycelyn Howard, Marco Caccamo, James E Slaven, Irmina Gradus-Pizlo
BACKGROUND: In 2014, Joint Commission recommended palliative care (PC) engagement in ventricular assist device (VAD) implantation as destination therapy. Limited information is available on established PC protocols in the mechanical circulatory support (MCS) population. MEASURES: The goals of our PC consultation were to document advance care planning (ACP) discussions and designate a surrogate decision maker (SDM) before MCS implantation. A retrospective analysis compared the frequency of PC consults, ACP discussion, and SDM before and after protocol implementation...
July 15, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28712987/the-tailored-study-a-randomized-controlled-trial-to-improve-surrogate-decision-making
#13
Daniel P Sulmasy, Mark T Hughes, Gayane Yenokyan, Joan Kub, Peter B Terry, Alan B Astrow, Julie A Johnson, Grace Ho, Marie T Nolan
CONTEXT: Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. OBJECTIVES: To test the effectiveness of an intervention to help surrogate decision makers. METHODS: 166 patients (41% with ALS and 59% with gastrointestinal cancers) and their surrogates at 2 university medical centers were randomized to an intensive nurse-directed discussion of the end of life Decision Control Preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL); 163 completed baseline interviews and underwent the intervention...
July 13, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28709997/methodological-challenges-identified-for-the-evaluation-of-clinical-effectiveness-in-the-context-of-accelerated-regulatory-approval-an-overview
#14
REVIEW
Nerys Woolacott, Mark Corbett, Julie Jones-Diette, Robert Hodgson
BACKGROUND: Regulatory authorities are approving innovative therapies with limited evidence. Whilst this level of data is sufficient for the regulator to establish an acceptable risk-benefit balance, it is problematic for downstream health technology assessment, where assessment of cost-effectiveness requires reliable estimates of effectiveness relative to existing clinical practice. Some key issues associated with a limited evidence base include using data, from non-randomised studies, from small single-arm trials, or from single-centre trials; and using surrogate endpoints...
July 11, 2017: Journal of Clinical Epidemiology
https://www.readbyqxmd.com/read/28685395/what-families-need-and-physicians-deliver-contrasting-communication-preferences-between-surrogate-decision-makers-and-physicians-during-outcome-prognostication-in-critically-ill-tbi-patients
#15
Thomas Quinn, Jesse Moskowitz, Muhammad W Khan, Lori Shutter, Robert Goldberg, Nananda Col, Kathleen M Mazor, Susanne Muehlschlegel
BACKGROUND: Surrogate decision-makers ("surrogates") and physicians of incapacitated patients have different views of prognosis and how it should be communicated, but this has not been investigated in neurocritically ill patients. We examined surrogates' communication preferences and physicians' practices during the outcome prognostication for critically ill traumatic brain injury (ciTBI) patients in two level-1 trauma centers and seven academic medical centers in the USA. METHODS: We used qualitative content analysis and descriptive statistics of transcribed interviews to identify themes in surrogates (n = 16) and physicians (n = 20)...
July 6, 2017: Neurocritical Care
https://www.readbyqxmd.com/read/28638969/introduction-childhood-and-disability
#16
EDITORIAL
Erica K Salter
From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child's disability. Because these decisions are almost always made by surrogate decision-makers (parents and caregivers) and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care...
June 21, 2017: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/28614079/do-not-resuscitate-with-no-surrogate-and-no-advance-directive-an-ethics-case-study
#17
Jamie Diamond, Umesh Gidwani, Rosamond Rhodes
Do-not-resuscitate (DNR) orders are typically signed by physicians in conjunction with patients or their surrogate decision makers in order to instruct healthcare providers not to perform cardiopulmonary resuscitation (CPR). Both the medical literature and CPR guidelines fail to address when it is appropriate for physicians to sign DNR orders without any knowledge of a patient's wishes. We explore the ethical issues surrounding instituting a two-physician DNR for a dying patient with multiple comorbidities and no medical record on file, no advance directives, and no surrogate decision maker...
2017: Journal of Clinical Ethics
https://www.readbyqxmd.com/read/28569431/providing-support-to-surrogate-decision-makers-for-people-living-with-dementia-healthcare-professional-organisational-and-community-responsibilities
#18
Christopher Shanley, Deirdre Fetherstonhaugh, Linda McAuliffe, Michael Bauer, Elizabeth Beattie
The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia...
June 1, 2017: Health & Social Care in the Community
https://www.readbyqxmd.com/read/28562402/artificial-nutrition-and-hydration-in-people-with-late-stage-dementia
#19
Lenora Smith, Rita Ferguson
The progressive nature of dementia marks this disease as a terminal illness in the advanced stage, and palliative care rather than curative treatment is indicated. The use of feeding tubes to deliver artificial nutrition and hydration at end of life is often part of the plan of care for people with dementia. Current evidence, however, suggests that tube feeding in advanced dementia is not beneficial and the burdens of the procedure and the feedings themselves outweigh any benefits. Evidence also reveals that healthcare providers may lack evidence-based knowledge about artificial nutrition and hydration to adequately inform families and surrogate decision makers...
June 2017: Home Healthcare Now
https://www.readbyqxmd.com/read/28549520/-taking-over-somebody-s-life-experiences-of-surrogate-decision-makers-in-the-surgical-intensive-care-unit
#20
Elizabeth J Lilley, Megan A Morris, Nicholas Sadovnikoff, Jamahal M Luxford, Navin R Changoor, Anna Bystricky, Angela M Bader, Zara Cooper
BACKGROUND: Impaired capacity of patients necessitates the use of surrogates to make decisions on behalf of patients. Little is known about surrogate decision-making in the surgical intensive care unit, where the decline to critical illness is often unexpected. We sought to explore surrogate experiences with decision-making in the surgical intensive care unit. METHODS: This qualitative study was performed at 2 surgical intensive care units at a single, tertiary, academic hospital Surrogate decision-makers who had made a major medical decision for a patient in the surgical intensive care unit were identified and enrolled prospectively...
August 2017: Surgery
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