Deciding to withhold/withdraw life-sustaining treatments from incompetent adults following unanticipated, catastrophic illnesses: A phenomenological study of surrogate decision makers' experiences
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The purpose of this study was to describe the experience and meaning of having made a decision to withhold and/or withdraw life-sustaining treatments from an adult who was rendered incompetent following an unanticipated, catastrophic illness. Participants were solicited six to 18 months after the death of their loved ones through personal networking, a flyer, and contact with a bereavement group. Interview data from 13 participants were analyzed using Giorgi's (1990) method for phenomenological inquiry. Two major themes emerged to describe the surrogate decision-making experience (SDME). The first theme is Representation of Other. The second theme is Memory Manipulation. The themes are presented through the use of an orchestral performance metaphor. Representation of Other is portrayed as what participants do when they are asked to be surrogate decision makers (SDMs). The participants describe how the patients' advance directives impacted their decision-making experiences. The SDMs also describe advocating for clinical resources and communication while representing the other. Findings also indicate that SDMs are aware of multiple audiences and represent multiple others, including themselves, during the SDME. The second theme is Memory Manipulation, which describes how SDMs fulfill their role. There are three aspects to this theme. This first is reconciling memories of their respective loved ones with an unanticipated, catastrophic reality. The second is orchestrating memories through the decision-making process itself. The last aspect of Memory Manipulation is when the SDMs reconcile their SDME memories with their grief.
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 9928360; ProQuest document ID: 304508997. The author still retains copyright.
This item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
Type | Dissertation |
Acquisition | Proxy-submission |
Review Type | None: Degree-based Submission |
Format | Text-based Document |
Evidence Level | Phenomenology |
Research Approach | Qualitative Research |
Keywords | Caregiver Burden and Decisionmaking; Advance Directives in Practice; Acceptance |
CINAHL Subject(s) | Decision Making, Family; Euthanasia, Passive |
Grantor | Boston College |
Advisor | Fry, Sara T. |
Level | PhD |
Year | 1999 |
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