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

“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.

Psychiatric Advance Directives

2003 ◽  
Vol 9 (2) ◽  
pp. 55-59 ◽  
Author(s):  
Paula K. Vuckovich
Keyword(s):  
Health Care ◽  
Decision Maker ◽  
Advance Directives ◽  
Care Provider ◽  
Mentally Ill ◽  
Autonomous Control ◽  
Surrogate Decision Maker ◽  
Psychiatric Advance Directives ◽  
Mentally Ill Persons ◽  
Surrogate Decision

Psychiatric advance directives (PADs) have been legally defined in 12 states and implemented in all but 9. PADs may prevent unwanted treatment and identify preferred treatment. They may also allow mentally ill persons to exercise autonomous control over care even during periods of illness-induced incompetence. PADs can be beneficial for intermittently psychotic patients who have a trusted health care provider and a surrogate decision maker. Because of the growing interest in the use of PADs, nurses should be informed about the intended purposes, benefits, and drawbacks of them.

scholarly journals POLST Signature Requirements: Responding With Compassion While Ensuring Informed Consent

2020 ◽  
pp. 104990912095308
Author(s):  
Robert Macauley ◽  
Susan Tolle
Keyword(s):  
Health Care ◽  
Informed Consent ◽  
Decision Maker ◽  
Health Care Professional ◽  
Patient Autonomy ◽  
Necessary Condition ◽  
Surrogate Decision Maker ◽  
Decisional Capacity ◽  
Spiritual Distress ◽  
Surrogate Decision

The majority of states require the signature of a surrogate decision maker on a POLST form for a patient who lacks decisional capacity. While commendable in its intention to ensure informed consent, in some cases this may lead the surrogate to feel that they are signing their loved one’s “death warrant,” adding to their emotional and spiritual distress. In this paper we argue that such a signature should be recommended rather than required, as it is neither a sufficient nor necessary condition of informed consent. Additional steps—such as requiring the attestation and documentation of the signing health care professional that verbal consent was fully informed and voluntary—can achieve the ultimate goal of respecting patient autonomy without adding to the surrogate’s burden.

scholarly journals INFORMED CONSENT IN CLINICAL TRIALS FOR PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S28-S28 ◽  
Author(s):  
Joan G Carpenter
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Clinical Trials ◽  
Informed Consent ◽  
Nursing Homes ◽  
Decision Maker ◽  
Surrogate Decision Maker ◽  
Decision Making Capacity ◽  
Consent Document ◽  
Surrogate Decision

Abstract Informed consent is one of the most important processes during the implementation of a clinical trial; special attention must be given to meeting the needs of persons with dementia in nursing homes who have impaired decision making capacity. We overcame several challenges during enrollment and consent of potential participants in a pilot clinical trial including: (1) the consent document was designed for legally authorized representatives however some potential participants were capable of making their own decisions; (2) the written document was lengthy yet all seven pages were required by the IRB; (3) the required legal wording was difficult to understand and deterred potential participants; and (4) the primary mode of communication was via phone. We tailored assent and informed consent procedures to persons with dementia and their legally authorized representative/surrogate decision maker to avoid risking an incomplete trial and to improve generalizability of trial results to all persons with dementia.

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