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  • Lowers JPM manuscript-VSED-FINAL

    Rights statement: Final publication is available from Mary Ann Liebert, Inc., publishers https://doi.org/10.1089/jpm.2020.0223

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Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking

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Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking. / Lowers, Jane; Hughes, Sean; Preston, Nancy.

In: Journal of Palliative Medicine, Vol. 24, No. 3, 16.02.2021, p. 376-381.

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@article{f4eeb90b5ac545a8b6fa507caa43a10a,
title = "Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking",
abstract = "Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.Objective: To explore the experiences of caregivers who supported a patient through VSED.Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.",
author = "Jane Lowers and Sean Hughes and Nancy Preston",
note = "Final publication is available from Mary Ann Liebert, Inc., publishers https://doi.org/10.1089/jpm.2020.0223",
year = "2021",
month = feb,
day = "16",
doi = "10.1089/jpm.2020.0223",
language = "English",
volume = "24",
pages = "376--381",
journal = "Journal of Palliative Medicine",
issn = "1096-6218",
publisher = "Mary Ann Liebert Inc.",
number = "3",

}

RIS

TY - JOUR

T1 - Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking

AU - Lowers, Jane

AU - Hughes, Sean

AU - Preston, Nancy

N1 - Final publication is available from Mary Ann Liebert, Inc., publishers https://doi.org/10.1089/jpm.2020.0223

PY - 2021/2/16

Y1 - 2021/2/16

N2 - Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.Objective: To explore the experiences of caregivers who supported a patient through VSED.Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.

AB - Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.Objective: To explore the experiences of caregivers who supported a patient through VSED.Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.

U2 - 10.1089/jpm.2020.0223

DO - 10.1089/jpm.2020.0223

M3 - Journal article

VL - 24

SP - 376

EP - 381

JO - Journal of Palliative Medicine

JF - Journal of Palliative Medicine

SN - 1096-6218

IS - 3

ER -