“Did I make the right decision?”: The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia

Dementia ◽  
2017 ◽  
Vol 18 (5) ◽  
pp. 1601-1614 ◽  
Author(s):  
Deirdre Fetherstonhaugh ◽  
Linda McAuliffe ◽  
Christopher Shanley ◽  
Michael Bauer ◽  
Elizabeth Beattie
Keyword(s):  
Decision Maker ◽  
Healthcare Professionals ◽  
Decision Makers ◽  
Surrogate Decision Maker ◽  
Face To Face ◽  
Telephone Interviews ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
The Right

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. Five themes were identified: becoming the only – or main – surrogate decision maker; growing into the role of surrogate decision maker; dealing with the stress of making decisions; having to challenge healthcare professionals; and getting support – or not – from family members. An overarching construct tying the themes together is the description of the participants’ experience as being on a difficult and unpredictable journey. Healthcare professionals can provide support by acting as empathic guides on this journey.

Improving documentation of surrogate decision makers in medical oncology clinic.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 63-63
Author(s):  
Melisa L. Wong ◽  
Hala Borno ◽  
Reena Mahajan ◽  
Kara E. Bischoff ◽  
Brook Calton ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Decision Maker ◽  
Medical Oncology ◽  
Stage Iv ◽  
Decision Makers ◽  
Surrogate Decision Making ◽  
Surrogate Decision Maker ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Stage Iv Cancer

63 Background: Advance care planning (ACP) is an important component of high quality care for cancer patients. A measurable and early step in the ACP process is for patients to identify a surrogate decision maker and document this information in the medical record. Methods: To improve documentation of surrogate decision makers for stage IV cancer patients, we designed a hematology/oncology fellow-led multidisciplinary quality improvement (QI) initiative including: 1) ACP education for fellows, 2) ACP patient education materials and online resources, and 3) standardized note templates for surrogate documentation. We aimed to document surrogate decision makers or discussions for > 50% of stage IV cancer outpatients evaluated by a fellow cumulatively over the 2016-2017 academic year. Patients seen for second opinion visits were excluded. Audit and feedback of individual fellow and group results were conducted twice a month. During each audit period, we randomly selected 2 medical oncology clinic sessions per outpatient fellow and reviewed all new patient and follow-up notes for surrogate decision maker documentation. Results: Prior to implementation, baseline surrogate decision maker documentation by fellows was 2% (1 out of 55 stage IV cancer patients seen during 2 randomly selected clinic sessions per outpatient fellow from January to March 2016). Since implementation in July 2016, 20 fellows have participated during outpatient rotations. During randomly selected clinic sessions from July to October 2016, 156 eligible stage IV cancer patients were evaluated by fellows. Surrogate decision makers or discussions were documented for 64 patients (41%). Overall, fellows felt comfortable discussing surrogate decision making with patients but often forgot to address it during the visit. Conclusions: Our fellow-led QI initiative improved surrogate decision maker documentation for stage IV cancer patients from 2% to 41%. A centralized ACP navigator (which includes a surrogate decision maker section) was recently added to our electronic medical record. As part of the ongoing efforts to achieve our cumulative goal, we will leverage this new feature to engage clinic staff in documentation of surrogate decision making as well.

scholarly journals IMPACT OF END-OF-LIFE PLANNING ON SURROGATE DECISION-MAKER ANXIETY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S109-S109
Author(s):  
April Aloiau ◽  
Daniel L Segal ◽  
Alan Mouchawar ◽  
Melissa J Benton
Keyword(s):  
End Of Life ◽  
Decision Maker ◽  
Educational Intervention ◽  
Anxiety Scale ◽  
Decision Makers ◽  
Surrogate Decision Maker ◽  
Advanced Illness ◽  
Post Intervention ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract At the end of life, adults with advanced illness frequently rely on surrogate decision makers to make health care decisions. Surrogate decision makers often have anxiety related to the difficulty and complexity of making end of life decisions. This project evaluated whether an educational intervention focused on creating a specific plan of care for hospice patients would reduce anxiety among their surrogate decision makers. The Geriatric Anxiety Scale (GAS), the State Trait Anxiety Inventory–State Anxiety Scale (STAI-S), and a single question about decision-making anxiety were used to measure surrogate decision maker anxiety before the intervention, immediately after the intervention, and 2 weeks following the intervention. After completing an informed consent, 12 patients (age 80 ± 14.7 years) and 18 surrogate decision makers (age 60 ± 12.9 years) from a Southern California hospice organization participated in the educational intervention. Immediately following the intervention surrogate decision maker anxiety decreased. Mean GAS anxiety scores decreased (p = 0.003) from 21.3 ± 9.8 to 16.6 ± 7.6 and STAI-S scores decreased (p = 0.003) from 43.3 ± 11.5 to 38.1 ± 9.9. However, when surrogate decision maker anxiety was measured 2 weeks post-intervention, anxiety had increased again, so that it was no longer significantly different from pre-intervention levels. Qualitative analyses showed high satisfaction, with 85% of decision makers reporting that the education was very or extremely helpful This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease in surrogate decision maker anxiety levels.

Surrogate Consent for Genomics Research in Intensive Care

2009 ◽  
Vol 18 (5) ◽  
pp. 418-426 ◽  
Author(s):  
Ann K. Shelton ◽  
Anne F. Fish ◽  
J. Perren Cobb ◽  
Jean A. Bachman ◽  
Ruth L. Jenkins ◽  
...  
Keyword(s):  
Intensive Care ◽  
Informed Consent ◽  
Health Care Professionals ◽  
Decision Makers ◽  
Major Theme ◽  
Intensive Care Patients ◽  
Genomics Research ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Surrogate decision makers may be poorly prepared to give informed consent for genomics research for their loved ones in intensive care. A review of the challenges and strategies associated with obtaining surrogates’ consent for genomics research in intensive care patients revealed that few well-controlled studies have been done on this topic. Yet, a major theme in the literature is the role of health care professionals in guiding surrogates through the informed consent process rather than simply witnessing a signature. Informed consent requires explicit strategies to approach potential surrogates effectively, educate them, and ensure that informed consent has been attained.

scholarly journals Identifying family members who may struggle in the role of surrogate decision maker*

2012 ◽  
Vol 40 (8) ◽  
pp. 2281-2286 ◽  
Author(s):  
Alyssa Majesko ◽  
Seo Yeon Hong ◽  
Lisa Weissfeld ◽  
Douglas B. White
Keyword(s):  
Decision Maker ◽  
Family Members ◽  
Surrogate Decision Maker ◽  
Surrogate Decision

The new futility? The rhetoric and role of “suffering” in pediatric decision-making

2019 ◽  
Vol 27 (1) ◽  
pp. 16-27
Author(s):  
Erica K Salter
Keyword(s):  
Decision Making ◽  
Decision Makers ◽  
Medical Decision ◽  
Value Judgments ◽  
Medical Decisions ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Pediatric Decision Making

This article argues that while the presence and influence of “futility” as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.

scholarly journals Cross-sectional survey of surrogate decision-making in Japanese medical practice

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Masashi Tanaka ◽  
Seiji Bito ◽  
Aya Enzo ◽  
Takethoshi Okita ◽  
Asai Atsushi
Keyword(s):  
Decision Making ◽  
Large Scale ◽  
Healthcare Professionals ◽  
Decision Makers ◽  
Decision Making Process ◽  
Surrogate Decision Making ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract Background Instances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan. Methods A cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process. Results Of the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates’ considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings. Conclusions Surrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning.

Contemporary Machiavellian theses "The strategy of the role of the absurd state as a model"

2020 ◽  
pp. 3
Author(s):  
Ali Hussein Hameed ◽  
Saif Hayder AL.Husainy
Keyword(s):  
International Relations ◽  
Decision Maker ◽  
Turning Point ◽  
Information Revolution ◽  
Main Hypothesis ◽  
The Subject ◽  
Area Of Influence ◽  
The Right ◽  
Modern Technologies

In the anarchism that governs the nature and patterns of international relations characterized by instability and uncertainty in light of several changes, as well as the information revolution and the resulting developments and qualitative breakthroughs in the field of scientific and advanced technological knowledge and modern technologies.  All of these variables pushed toward the information flow and flow tremendously, so rationality became an indispensable matter for the decision maker as he faces these developments and changes. There must be awareness and rationality in any activity or behavior because it includes choosing the best alternative and making the right decision and selecting the information accurately and mental processing Through a mental system based on objectivity, methodology, and accumulated experience away from idealism and imagination, where irrationality and anarchy are a reflection of the fragility of the decision-maker, his lack of awareness of the subject matter, his irresponsibility, and recklessness that inevitably leads to failure by wasting time and Effort and potential. The topic acquires its importance from a search in the strategies of the frivolous state and its characteristics with the ability to influence the regional, and what it revealed is a turning point in how to adapt from the variables and employ them to their advantage and try to prove their existence. Thus, the problem comes in the form of a question about the possibility of the frivolous state in light of the context of various regional and international events and trends. The answer to this question stems from the main hypothesis that (the aim which the frustrating state seeks to prove is that it finds itself compelled to choose several strategies that start from the nature of its characteristics and the goals that aim at it, which are centered in the circle of its interests in the field of its struggle for the sake of its survival and area of influence).

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