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Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients

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Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients. / Stanley, Sarah ; Nwosu, Amara.

In: AMRC Open Research, 11.01.2021.

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@article{79cbc80306aa4e18a485b1f4b80d8f79,
title = "Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients",
abstract = "As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research.Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided {\textquoteleft}advanced consent{\textquoteright} to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen.In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.",
keywords = "Palliative care, research, end of life, consent",
author = "Sarah Stanley and Amara Nwosu",
year = "2021",
month = jan,
day = "11",
doi = "10.12688/amrcopenres.12961.1",
language = "English",
journal = "AMRC Open Research",
issn = "2517-6900",

}

RIS

TY - JOUR

T1 - Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients

AU - Stanley, Sarah

AU - Nwosu, Amara

PY - 2021/1/11

Y1 - 2021/1/11

N2 - As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research.Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen.In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.

AB - As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research.Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen.In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.

KW - Palliative care

KW - research

KW - end of life

KW - consent

U2 - 10.12688/amrcopenres.12961.1

DO - 10.12688/amrcopenres.12961.1

M3 - Journal article

JO - AMRC Open Research

JF - AMRC Open Research

SN - 2517-6900

ER -