Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

H. Voss, A. Vogel, A. M. A. Wagemans, A. L. Francke, J. F. M. Metsemakers, A. M. Courtens, A. J. E. de Veer

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the ‘surprise question’, and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
Original languageEnglish
JournalJournal of Intellectual Disability Research
DOIs
Publication statusPublished - 2019

Cite this

@article{e186f74251a34649804feb6b9eb797d8,
title = "Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews",
abstract = "Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the ‘surprise question’, and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93{\%}). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43{\%}) and/or hospitalisation admissions (47{\%}). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.",
author = "H. Voss and A. Vogel and Wagemans, {A. M. A.} and Francke, {A. L.} and Metsemakers, {J. F. M.} and Courtens, {A. M.} and {de Veer}, {A. J. E.}",
year = "2019",
doi = "10.1111/jir.12664",
language = "English",
journal = "Journal of Intellectual Disability Research",
issn = "0964-2633",
publisher = "Wiley-Blackwell",

}

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews. / Voss, H.; Vogel, A.; Wagemans, A. M. A.; Francke, A. L.; Metsemakers, J. F. M.; Courtens, A. M.; de Veer, A. J. E.

In: Journal of Intellectual Disability Research, 2019.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

AU - Voss, H.

AU - Vogel, A.

AU - Wagemans, A. M. A.

AU - Francke, A. L.

AU - Metsemakers, J. F. M.

AU - Courtens, A. M.

AU - de Veer, A. J. E.

PY - 2019

Y1 - 2019

N2 - Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the ‘surprise question’, and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

AB - Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the ‘surprise question’, and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85068058091&origin=inward

UR - https://www.ncbi.nlm.nih.gov/pubmed/31237063

U2 - 10.1111/jir.12664

DO - 10.1111/jir.12664

M3 - Article

JO - Journal of Intellectual Disability Research

JF - Journal of Intellectual Disability Research

SN - 0964-2633

ER -