You don't look very well dear: consultants and decisions in cancer care for people with ID

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Abstract

Aim: Consultants are the ?gate-keepers? to palliative care treatment. Consultant decision-making for people with ID who have cancer was considered, with the aim of ascertaining the most appropriate ways of involving people with ID and their family/carers in these decisions. Method: Focus groups were held throughout Kent with specialist palliative care consultants. These included discussions on when and how a person with ID would be involved in decision-making about their treatment. Results: Palliative care consultants had concerns about involvement of patients with ID in decision-making. In particular, fear over capacity issues was common and appeared to determine levels of involvement. Consultant-made decisions were also limited by lack of knowledge about the person?s quality of life. Conclusion: Wider discussion regarding consultant decision-making in the care of people with ID who develop cancer is essential. At the present time, there is limited involvement by the person with ID, although the UK Mental Capacity Act stresses that all should be able to participate in decisions, even if time and support is required to do this. Further research is needed to establish how best to support consultants to include people with ID in decision-making.

Cite this

@article{5829db8646ed49feb24cafe352c88ee8,
title = "You don't look very well dear: consultants and decisions in cancer care for people with ID",
abstract = "Aim: Consultants are the ?gate-keepers? to palliative care treatment. Consultant decision-making for people with ID who have cancer was considered, with the aim of ascertaining the most appropriate ways of involving people with ID and their family/carers in these decisions. Method: Focus groups were held throughout Kent with specialist palliative care consultants. These included discussions on when and how a person with ID would be involved in decision-making about their treatment. Results: Palliative care consultants had concerns about involvement of patients with ID in decision-making. In particular, fear over capacity issues was common and appeared to determine levels of involvement. Consultant-made decisions were also limited by lack of knowledge about the person?s quality of life. Conclusion: Wider discussion regarding consultant decision-making in the care of people with ID who develop cancer is essential. At the present time, there is limited involvement by the person with ID, although the UK Mental Capacity Act stresses that all should be able to participate in decisions, even if time and support is required to do this. Further research is needed to establish how best to support consultants to include people with ID in decision-making.",
author = "Rachel Forrester-Jones",
year = "2010",
month = "8",
day = "16",
doi = "10.1111/j.1468-3148.2010.00580.x",
language = "English",
volume = "23",
pages = "415--415",
journal = "Journal of Applied Research in Intellectual Disabilities",
issn = "1360-2322",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "5",

}

TY - JOUR

T1 - You don't look very well dear: consultants and decisions in cancer care for people with ID

AU - Forrester-Jones, Rachel

PY - 2010/8/16

Y1 - 2010/8/16

N2 - Aim: Consultants are the ?gate-keepers? to palliative care treatment. Consultant decision-making for people with ID who have cancer was considered, with the aim of ascertaining the most appropriate ways of involving people with ID and their family/carers in these decisions. Method: Focus groups were held throughout Kent with specialist palliative care consultants. These included discussions on when and how a person with ID would be involved in decision-making about their treatment. Results: Palliative care consultants had concerns about involvement of patients with ID in decision-making. In particular, fear over capacity issues was common and appeared to determine levels of involvement. Consultant-made decisions were also limited by lack of knowledge about the person?s quality of life. Conclusion: Wider discussion regarding consultant decision-making in the care of people with ID who develop cancer is essential. At the present time, there is limited involvement by the person with ID, although the UK Mental Capacity Act stresses that all should be able to participate in decisions, even if time and support is required to do this. Further research is needed to establish how best to support consultants to include people with ID in decision-making.

AB - Aim: Consultants are the ?gate-keepers? to palliative care treatment. Consultant decision-making for people with ID who have cancer was considered, with the aim of ascertaining the most appropriate ways of involving people with ID and their family/carers in these decisions. Method: Focus groups were held throughout Kent with specialist palliative care consultants. These included discussions on when and how a person with ID would be involved in decision-making about their treatment. Results: Palliative care consultants had concerns about involvement of patients with ID in decision-making. In particular, fear over capacity issues was common and appeared to determine levels of involvement. Consultant-made decisions were also limited by lack of knowledge about the person?s quality of life. Conclusion: Wider discussion regarding consultant decision-making in the care of people with ID who develop cancer is essential. At the present time, there is limited involvement by the person with ID, although the UK Mental Capacity Act stresses that all should be able to participate in decisions, even if time and support is required to do this. Further research is needed to establish how best to support consultants to include people with ID in decision-making.

U2 - 10.1111/j.1468-3148.2010.00580.x

DO - 10.1111/j.1468-3148.2010.00580.x

M3 - Meeting abstract

VL - 23

SP - 415

EP - 415

JO - Journal of Applied Research in Intellectual Disabilities

T2 - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

SN - 1360-2322

IS - 5

ER -