Psychological Medicine, 1999, 29, 1367–1375.

Printed in the United Kingdom

# 1999 Cambridge University Press

Assessing the ability of people with a learning

disability to give informed consent to treatment
K. A R S C O TT," D. D A G N A N    B. S T E N F E R T K R O E SE
From the Tizard Centre, University of Kent at Canterbury ; West Cumbria Healthcare NHS Trust,
Community Learning Disabilities Service, Workington, Cumbria ; and School of Psychology, University of
Birmingham

ABSTRACT
Background. People with a learning disability are increasingly being encouraged to take a more
active role in decisions about their psychological and medical treatment, raising complex questions
concerning their ability to consent. This study investigates the capacity of people with a learning
disability to consent in the context of three treatment vignettes, and the influence of verbal and
memory ability on this capacity.
Methods. Measures of verbal ability, memory ability and ability to consent to treatment (ACQ) were
administered to 40 people with a learning disability. The ACQ consisted of three vignettes depicting
a restraint, psychiatric or surgical intervention. These were followed by questions addressing
people’s ability to understand the presenting problem ; the nature of the proposed intervention ; the
alternatives, risks and benefits ; their involvement in the decision-making process ; and their ability
to express a clear decision with a rationale for treatment.
Results. Five people (12n5 %) could be construed as able to consent to all three vignettes ; 26 (65 %)
could be construed as able to consent to at least one. The questions that were most difficult to
answer concerned a participants’ rights, options and the impact of their choices. Verbal and
memory ability both influenced ability to consent.
Conclusions. This study introduces a measure that may enable clinicians to make more systematic
assessments of people’s capacity to consent. A number of issues surrounding the complex area of
consent to treatment are also raised.

in England and Wales, stating that capacity re-

INTRODUCTION
Questions regarding capacity to consent to
treatment frequently arise for people with a
learning disability (the current UK term broadly
equivalent to the US definition of Mental
Retardation) and health professionals are in-
creasingly called upon to make determinations
about an individual’s competence in this area.
However, universally accepted standards or
guidelines for establishing an individual’s ability
to consent to treatment have been lacking (Law
Commission, 1991 ; Venesey, 1994 ; Murphy &
Clare, 1995). The Law Commission (1991, 1993,
1995) has attempted to clarify the legal position
" Address for correspondence : Dr Katy Arscott, Tizard Centre,
University of Kent at Canterbury, Canterbury, Kent CT2 7LZ.
1367
quires an ‘ understanding in broad terms of the
nature and likely effects of what is to take place ’
(Law Commission, 1991, p. 29). Current legal
definitions for capacity can be found in case law
and in the Mental Health Act Code of Practice
(Department of Health and Welsh Office, 1993,
para. 15.10). The latter provides some guidance,
suggesting that to be able to consent an
individual must possess an ‘ adequate knowledge
of the purpose, nature, likely effects and risks of
[the] treatment including the likelihood of its
success and any alternatives to it ’ (p. 55).
However, this applies only to individuals with a
mental disorder as defined by the Act, and it is
unclear what criteria should be used to assess
‘ adequate ’ knowledge. In case law (see Re C,
1368 K. Arscott and others
1994 ; Re MB, 1997) the current accepted test of
capacity requires an individual to : (1) under-
stand sufficiently the nature, purpose and effects
of the proposed treatment and retain the
treatment information ; (2) believe it ; and (3)
assess the information in arriving at a choice.
Although this test has gained currency in
England and Wales, no objective tests for
measuring capacity to consent to treatment have
been suggested and clinicians frequently turn to
their own and colleagues’ subjective impressions
of an individual’s capacity (Law Commission,
1991).
The law concerning consent to treatment is
more developed in the USA, the criteria being
more stringent than in England and Wales. In
parts of the USA informed consent must be
given for treatment. It has been suggested that
there are three major components to informed
consent, these are : (1) the possession of sufficient
information relevant to the decision to be made ;
(2) the capacity to make the decision and to
understand the consequences of the decision ;
and (3) having made the decision voluntarily
and free from coercion (Turnbull, 1977 ; Curran
& Hollins, 1994). Four legal criteria are com-
monly employed for assessing the ‘ capacity ’
element of informed consent, these are : (1)
communicating a choice about whether or not
to have the treatment ; (2) understanding relevant
information ; (3) appreciating the current situ-
ation and its consequences ; and (4) manipulating
information rationally (Appelbaum & Grisso,
1988). A number of authors have attempted to
operationalize the above criteria, developing
measures to test the capacity of a number of
client groups to consent to treatment, including
older adults and people with a mental health
problem (Fitten et al. 1990 ; Tymchuk & Ous-
lander, 1990 ; Appelbaum & Grisso, 1995 ; Grisso
et al. 1995).
One such measure has been developed for use
with people with a learning disability (Morris et
al. 1993). The ability to consent to treatment
was measured using vignettes describing indiv-
iduals being offered behavioural, surgical and
medical interventions. These were followed by a
series of questions to assess peoples’ under-
standing of the presenting problem ; the nature
of the procedure ; the risks, benefits and alter-
natives ; their involvement in the decision-
making process ; and their ability to arrive at a
decision with a rationale. The authors developed
scoring protocols to determine whether the
minimum levels of knowledge, capacity and
voluntariness required were achieved. Opera-
tional definitions of what was considered to be
adequate knowledge were based around the four
American legal criteria outlined above. Despite
the authors’ aim to allow maximum self-
determination the measure proved to be ex-
tremely stringent with only six out of 15
individuals (40 %) with mild learning disabilities
and one out of 15 (6n7 %) people with severe
learning disabilities being deemed capable of
giving their consent to treatment.
It is important when developing tests of
capacity to consent to take into consideration
the particular difficulties that people with a
learning disability may experience when making
decisions about treatment (Department of
Health and Welsh Office Mental Health Act
Code of Practice, 1993 ; Murphy & Clare, 1995).
For people with a learning disability these
include deficits in verbal and memory abilities
(Ellis et al. 1985 ; Clements, 1987) ; difficulties
with problem solving, a tendency towards
acquiescence and suggestibility and problems
with concreteness and abstracting from examples
(Murphy & Clare, 1995) ; and difficulties pro-
cessing complex sequences of information (Cle-
ments, 1987). Morris et al. (1993) observed that
deficits in memory, comprehension and infer-
ential reasoning caused problems for their
participants in expressing a rational decision.
However, they do not appear to have taken
these factors into consideration in the develop-
ment of their measure.
It is proposed here that if the above issues are
addressed when assessing capacity it may be
possible to facilitate more people with a learning
disability in making competent decisions about
treatment. It is also argued that the criteria used
by Morris et al. (1993) are unnecessarily stringent
and could be relaxed to adhere more closely to
the ‘ broad terms ’ understanding required by
English law. Thus, this study adapts the Morris
et al. measure, taking into consideration the
difficulties experienced by people with a learning
disability when making decisions about treat-
ment. The original measure is simplified with the
aim of making it easier for people to understand
the information presented. The aim is not to
develop an absolute measure of capacity to
 Assessing ability to consent to treatment
consent, but to provide clinicians with a tool
that might assist them in making judgements
about the capacity of individual clients to
consent to treatment. The hypothesis that verbal
and memory ability will influence people’s ability
to consent to the treatment vignettes and to
respond to the individual components of ca-
pacity to consent is then investigated.
METHOD
Participants
Participants were selected on a number of
criteria. All were over 18 years of age, had the
expressive language ability to answer simple
questions, possessed an attention span of at least
30 min, were taking medication and were willing
to be interviewed. Forty adults with a learning
disability participated in the research, 22 (55 %)
men and 18 (45 %) women (mean age 40n63, ..
9n98, range 20 to 57) from Social Education
Centres, Colleges and Employment Preparation
Units in two small towns in the West Midlands.
Ninety per cent of participants achieved a British
Picture Vocabulary Scale score that would place
them in the bottom 1 % of the population ; two
people achieved scores at the 37th percentile.
Twenty-six (65 %) people lived in the family
home, ten (25 %) lived in community homes,
three (7n5 %) lived alone and one person (2n5 %)
lived in hospital accommodation.
Measures
The following measures were administered.
(1) The short form of the British Picture
Vocabulary Scale (BPVS)
The BPVS (Dunn et al. 1982) is designed to
measure the extent of an individual’s English
receptive vocabulary and is closely related to
verbal IQ. Participants are read a list of words.
After each word four line drawings are pre-
sented, one of which illustrates the word.
Participants are required to point to the picture
which they think depicts this word. The scale
does not require participants to read or write
and responses can be gestural.
(2) The route recall and story recall memory
items taken from the Rivermead Behavioural
Memory Test for Children (RBMT-C)
These were chosen to test short- and long-term
verbal and spatial memory. The RBMT-C
1369
(Wilson et al. 1991) has a number of subtests
that are analogous to memory tasks involved in
normal daily life. It has been found to be
suitable and useful for adults with Down’s
syndrome (Wilson & Ivani-Chalian, 1995).
(3) The Ability to Consent Questionnaire
(ACQ)
The ACQ (adapted from Morris et al. 1993)
utilized Morris et al.’s three vignettes describing
individuals being offered treatments requiring
informed consent. The vignettes described a
restrictive restraint procedure, the prescription
of psychotropic medication and a surgical
procedure. The original vignettes ranged from
214–271 words (Flesch reading ease 77n9 to 86n4 ;
fairly easy to easy) and each consisted of a brief
description of an underlying problem, a pro-
posed treatment and a review of the alternatives,
risks and benefits of the procedure. For the
present study the original vignettes and their
mode of presentation were adapted in a number
of ways in order to facilitate understanding.
Although the length of the vignettes was similar
to the previous study (range 219–245 words), the
sentence structure and the wording for both the
vignettes and the questions were changed and
the American terminology was replaced. A
Flesch analysis (Flesch, 1948) conducted on
each vignette produced reading ease scores of
81n6 to 83n9, placing all vignettes in the ‘ easy ’ to
read bracket (80–90). March (1992) has found
that the use of photographs can facilitate the
comprehension of information and three simple
line drawings were therefore introduced to
accompany each vignette. The original vignettes
of Morris et al. were hypothetical and presented
in the second person (i.e. the participants were
placed as the subject of the vignettes). The
present study placed the vignettes in the third
person, introducing fictitious characters as the
subject of the stories. Participants had to say
what decisions they thought the person in the
vignette should make if facing a particular
treatment.
Three protocols were developed in the original
study, one for each of the vignettes. Each
protocol consisted of five major questions
designed to tap the abilities seen as important in
consent (Morris et al. 1993). These explored an
individual’s understanding of : (1) the presenting
problem ; (2) the nature of the proposed in-
1370 K. Arscott and others
tervention ; (3) the alternatives, risks and bene-
fits ; (4) their involvement in the decision-making
process, their rights and the options available ;
and (5) their ability to express a clear decision
with a rationale. The present study utilized the
same question areas, but questions were simpli-
fied and some were asked in two parts to make
them more simple to process and understand.
In the original study participants were given a
score of 1 or 0 for each question. A score of 0 on
any one of the five questions resulted in an over-
all determination of ‘ not capable ’ for that
vignette. For the present study these guidelines
for scoring were adapted to allow a more sensi-
tive judgement of each component of capacity.
Participants were able to score 0, 1 or 2 for each
question depending on the extent to which their
answers indicated a full understanding of the
material. A failure to score at least 1 on each
question would be considered to indicate an
overall lack of capacity to consent to the vignette
procedure. Although participants were required
to have some key understanding of the treatment
vignette and the decision-making process, this
was not as detailed as that required by the
previous study. For example, in order to score 2
on the questions regarding the consequences of
refusing medication participants had to state
two things that could happen in they said ‘ no ’ to
the proposed intervention, but to score 1 they
only had to mention one thing. In the previous
study the response scoring 1 would have led to
further questioning, but if no further detail was
given participants would be deemed unable to
consent. Participants in the present study scored
0 if they did not answer the question, gave a
clearly irrelevant or vague answer or provided
very little detail. In order to test the reliability of
the new scoring protocol, a second rater (the
second author) independently rated participant’s
responses to each question for each vignette.
The questionnaires from 14 subjects (35 %) were
randomly selected for reliability coding.
Procedure
Interviews took place at the day centre and
consisted of two 30 minute sessions. The
interviewer was observant of participants’ reac-
tions at all times to ensure that people were not
becoming distressed and checked at regular
intervals to see if they wanted to stop. The issue
of consent to participate in psychological re-
search is addressed further in a separate report
(Arscott et al. 1998).
In the first interview the ACQ was admin-
istered, with the three vignettes being presented
to participants in random order. The fictitious
person in the vignettes was a woman for 20 of
the participants and a man for the other 20
participants. Vignettes were read once all the
way through, accompanied by line drawings to
illustrate the text. They were then read for a
second time, in three sections : section one
included information about the nature of the
problem ; section two contained information
about the various interventions that had been
tried with no success ; and section three included
information about an alternative treatment with
its risks and benefits. Each section was again
accompanied by line drawings and the related
questions were asked after each chunk of
information had been presented. Participants
were questioned further if they did not give an
answer scoring maximum points and their
answers were recorded verbatim. Acceptable
non-directional probes included statements such
as ‘ Is there anything else that could be tried ? ’ if
only one example of an alternative intervention
was given, or ‘ Is there anything else you could
do ? ’ if a participant did not fully explain what
they could do about the proposed intervention.
It was stressed to the participants that they
could ask for information to be repeated at any
time and that they could ask questions if they
did not understand something. Few people
requested a further presentation or asked ques-
tions.
The second interview consisted of the short
form of the BPVS and the measure of memory
ability. The short-term memory items were
administered first, followed by the BPVS, and
finally the long-term memory items.
RESULTS
All statistical calculations were computed using
the SPSS statistical package. Cohen’s kappa
(Cohen, 1960) was calculated to test the reli-
ability of the scoring protocols in identifying
overall ability to consent to each type of vignette
and to test the reliability of the scoring protocols
across each question.
Kappas between raters for whether people
could consent were 1n00 for the restraint vignette,
 Assessing ability to consent to treatment 1371

Table 1. Descriptive data for scores on each question across vignettes

Surgical score Medical score Restraint score Scores for all
vignettes
0 1 2 0 1 2 0 1 2
Question N (%) N (%) N (%) N (%) N (%) N (%) N (%) N (%) N (%) Mean (..)

(1) Understands nature of 5 (12n5) 13 (32n5) 22 (55) 11 (27n5) 4 (10) 25 (62n5) 0 (0) 2 (5) 38 (95) 4n72 (1n32)
problem
(2) Understands alternative 2 (5) 13 (32n5) 25 (62n5) 1 (2n5) 13 (32n5) 26 (65) 2 (5) 6 (15) 32 (80) 4n95 (1n20)
interventions
(3) Understands proposed 3 (7n5) 12 (30) 25 (62n5) 6 (15) 15 (37n5) 19 (47n5) 7 (17n5) 12 (30) 21 (52n5) 4n22 (1n54)
treatment\procedure
(4) Understands risks\benefits 6 (15) 15 (37n5) 19 (47n5) 4 (10) 13 (32n5) 23 (57n5) 8 (20) 26 (65) 6 (15) 3n75 (1n58)
(5a) Understands rights\options 14 (35) 13 (32n5) 13 (32n5) 12 (30) 20 (50) 8 (20) 23 (57n5) 11 (27n5) 6 (15) 2n45 (1n72)
available
(5b) Understands impact of 8 (20) 6 (15) 26 (65) 12 (30) 24 (60) 4 (10) 20 (50) 18 (45) 2 (5) 2n80 (1n47)
choices
(6) Indicates a choice 1 (2n5) 5 (12n5) 34 (85) 1 (2n5) 11 (27n5) 28 (70) 1 (2n5) 18 (45) 21 (52n5) 5n00 (0n99)
Total 27n90 (6n94)

0n85 for the medical vignette and 0n71 for the
surgical vignette. Kappas between raters for
each question fell between 0n7 and 0n96, mean l
0n85, .. 0n08. Therefore, a high level of agree-
ment was evident in identifying ability to consent
to all three vignettes and in the scoring on
individual question items. This would suggest
that the scoring system employed was reliable.
Overall scores
Total scores on the ACQ ranged from 13 to 41
(mean l 27n9, .. l 6n96, maximum possible l
42). Total scores on each vignette were as
follows : medication, mean l 9n15, .. l 2n79 ;
restraint, mean l 8n63, .. l 2n46 ; surgical,
mean l 10n10, .. l 2n84. Twenty-seven par-
ticipants (67n5 %) had a modal score of 2, eight
(20 %) had a modal score of 1 and three (7n5 %)
had a modal score of 0. One participant (2n5 %)
achieved equal numbers of 0s and 2s and one
(2n5 %) achieved equal numbers of 0s and 1s.
Total memory scores ranged from 0 to 40n5
(mean l 23n31), .. l 10n84 ; max. possible 72)
and total verbal scores ranged from 6 to 30
(mean l 16n82, .. l 5n94 ; max. possible 31).
Capacity to consent to each treatment vignette
Fourteen (35 %) participants scored 0 on at least
one question from each vignette. Ten (25 %)
achieved a score of above 0 for every question
on just one vignette, 11 (27n5 %) on two vignettes
and five (12n5 %) on all three. Therefore, 26
(65 %) of the participants could be construed
as able to give an informed opinion regarding all
aspects of capacity to consent for at least one
treatment vignette. More people were able to
consent to the surgical vignette (N l 19, 47n5 %)
than to either the medical vignette (N l 16,
40 %) or the restraint vignette (N l 12, 30 %).
Individual question items
Table 1 shows the scores achieved on each
question for each vignette. The difference in the
means across the six questions collapsed across
all vignettes was examined using a one-way
repeated measures analysis of variance
(ANOVA). This analysis indicated that there
was a significant main effect (F(6, 234) l 35n22,
P 0n0001). Post hoc comparisons using
Scheffe! ’s procedure were conducted to determine
which means were different at the 0n05 level of
significance. A number of differences were
identified. The most notable finding was that
questions 5a and 5b were answered significantly
less well than all other questions, but did not
differ from each other. This would suggest that
questions regarding rights, options and impact
of choices were consistently the most difficult
to answer.
The influence of verbal and memory ability on
individual question items
In order to determine whether verbal and
memory ability were related to participants’
ability to give informed opinions regarding
individual components of capacity to consent,
a series of Pearson’s correlations was conducted
(Table 2). Verbal ability was found to be
significantly correlated with the total scores on
questions 1–5b (P 0n01) and with question 6
1372 K. Arscott and others

differences between the verbal and memory

Table 2. Correlations of the average score for
scores of those people deemed able to consent to
each question, and of the total score for each
each vignette (i.e. achieved a score of 1 or 2) and
vignette, with verbal and memory ability
those people deemed unable to consent. As can
Question Verbal (r) Memory (r) be seen from Table 3, verbal scores were
significantly higher (P 0n05) across all vig-
1 0n438** 0n264
2 0n431** 0n475**
nettes for people who were deemed able to
3 0n507** 0n589** consent as opposed to people deemed unable to
4 0n527** 0n362* consent. Memory scores were significantly
5a 0n531** 0n370*
5b 0n491** 0n424** higher (P 0n05) for people deemed able to
6 0n358* 0n395* consent to the surgical and medical vignettes,
Total score but not for the restraint vignette.
Restraint vignette 0n584** 0n492**
Medical vignette 0n571** 0n602**
Surgical vignette 0n572** 0n393* DISCUSSION
*P 0n05 ; ** P 0n01. In the present study an instrument for assessing
the capacity of people with a learning disability
Table 3. Means, standard deviations and t to give consent to three treatment vignettes was
values of verbal and memory raw scores by ability adapted and administered to 40 participants.
to consent to each vignette The hypothesis that people’s verbal and memory
ability are related to their overall ability to
Can consent Cannot consent consent to the treatment vignettes was then
N Mean (..) N Mean (..) t investigated and the extent to which verbal and
memory ability are associated with particular
Verbal components of consent was explored.
Surgical 19 19n79 (5n62) 21 14n14 (4n95) k3n38*
Medical 16 20n06 (5n94) 24 14n67 (4n98) k3n11* The present study identifies 65 % of the sample
Restraint 12 19n92 (7n17) 28 15n50 (4n90) k2n26* of people with a learning disability as able to
Memory consent to at least one treatment vignette. This
Surgical 19 27n16 (10n79) 21 19n83 (9n89) k2n24*
Medical 16 29n88 (8n72) 24 18n94 (9n99) k3n56*
is a higher proportion than in the Morris et al.
Restraint 12 28n17 (10n72) 28 21n23 (10n40) k1n92 (1993) paper. However, despite the adaptations
made to the vignettes and questions, 35 % were
*P 0n05.
unable to achieve at least a minimal under-
standing of all factors associated with capacity
(P 0n05). Memory ability was found to be to consent on any one of the vignettes. Par-
correlated with questions 2, 3 and 5b (P 0n01) ticipants found the surgical vignette the easiest,
and with questions 4, 5a and 6 (P 0n05). It was followed by the medical vignette and finally the
not significantly correlated with question 1. restraint intervention vignette. Morris et al.
Verbal ability was correlated with par- (1993) found that people demonstrated higher
ticipants’ total score for each vignette (P levels of knowledge about restrictive behavioural
0n01). Memory ability was also correlated with interventions than on the other vignettes and
participants’ total score for each vignette, but at attributed this to the fact that many people had
different levels of significance (restraint and received this type of intervention and were
medical vignettes (P 0n01), surgical vignette therefore likely to have had some formal
(P 0n05)). teaching in this area. All participants in the
present study were taking some form of medi-
The influence of verbal and memory ability on cation and the medical intervention vignette
overall ability to consent to each treatment may therefore have been expected to be the
vignette easiest. This was not the case and the data are
In order to determine whether verbal or memory not consistent with the argument that people
ability had any influence over an individual’s will be better able to consent if they have had
ability to consent to the treatment vignettes, previous experience of the treatment involved.
independent t tests were conducted to test for This finding is consistent with research showing
 Assessing ability to consent to treatment
that people with a learning disability (Arscott et
al. 1999), people with a physical illness (Farrow,
1992 ; Kiyingi, 1993) and people with mental
health problems (Clary et al. 1992), generally do
not possess sufficient information about the
medication prescribed to them. This area may
benefit from further investigation.
Understanding of individual components of
consent
Participants found certain questions easier to
answer than others. Questions addressing the
nature of the problem, alternative interventions,
the proposed intervention and the ability to
make a decision were the easiest to answer. The
most difficult questions to answer were those
concerning participants’ legal rights and options
regarding treatment, as well as the impact of
their choice to have the treatment or to refuse it.
It is important that these questions are included
in any assessment of capacity to consent to
ensure that people are making voluntary de-
cisions. However, in the current study many
people did not appear to appreciate that they
could refuse treatment or to understand what
might happen if they did. Morris et al. (1993)
also found that many participants insisted that
they had no choice or that they would get
treatment no matter what they said. If people
believe this when making hypothetical decisions
then it could be questioned whether they are
able to make truly voluntary decisions about
genuine treatment situations. It is also likely
that people with a learning disability may not
perceive that they are able to make a decision
that does not coincide with what the health
professional thinks is best. Morris et al. believe
that this is an area requiring more attention and
that people with a learning disability should be
taught that they have a right to participate in
treatment decisions and make alternative
choices. However, it is questionable whether
education will be effective unless people with a
learning disability are also permitted to make
fundamental life style decisions on a daily basis.
As the questions regarding the rights, options
and the impact of choices were the most difficult
to answer, it would be interesting to explore
whether any characteristics of an individual or
their life-style made people more likely to answer
these items adequately. Of course, it is also
worth considering the way in which questions 5a
1373
and 5b were worded. It may be that the language
used was difficult for people with a learning
disability to understand and that minor alter-
ations to the ACQ may go some way to
addressing this problem.
The influence of verbal and memory ability
Verbal ability was found to differ between the
group of participants who were able to consent
to all three treatment vignettes and the group
who were not. Memory ability was found to
differ between the group of participants who
were able to consent to the surgical and medical
vignettes and the group who were not. Both
verbal and memory ability were also found to be
associated with each of the individual compo-
nents of capacity to consent (except memory
ability with the question about the nature of the
problem). Clearly verbal and memory ability
may be influential factors in an individual’s
ability to consent to treatment. However, it is
not suggested that information about an indi-
vidual’s abilities in these areas should ever be
taken as a substitute for a full functional
assessment of capacity to consent. Instead, such
knowledge may guide professionals in deter-
mining the level at which to pitch the infor-
mation that they present to clients. It follows
that if information were to be made even less
dependent on verbal and memory ability, then
more people with a learning disability may be
able to understand enough information to be
deemed able to make decisions about treatment.
It is unclear at what point simplification of the
presented material involves reducing the criteria
required for consent to an unacceptable level.
However, it could be argued that such simpli-
fication places people with a learning disability
in a position of equality with the general
population when faced with complex decisions.
Possible uses of the ACQ
The aim of this study was not to develop an
absolute measure of capacity to consent, but to
provide clinicians with a tool which might assist
them in making judgements about the capacity
of individual clients to consent to treatment. For
example, a suggested use of the ACQ would be
as a first step in identifying areas where
individuals require further assistance to under-
stand the information needed to make an
informed decision regarding treatment. As high-
1374 K. Arscott and others
lighted previously, particular questions are likely
to pose greater difficulties for some clients and
these areas may require further attention when
presenting these clients with information. The
ACQ may also be used as one of a number of
assessments to assist clinicians in judgements
about an individual’s capacity to consent to a
specific treatment. Rather than as an absolute
measure of capacity it is likely to be more
helpful for the ACQ to be administered as one of
a number of assessments which may combine to
facilitate clinicians when forming judgements
about an individual’s ability to consent. Such a
battery may include tests of IQ, memory and
language ability in order to provide an indication
of an individual’s overall level of ability and to
assist clinicians in determining the level at which
to pitch information. It would also be important
to include a more specific assessment, similar to
the ACQ but relating to the specific decision that
the client is being asked to make. This would
allow a more constructional assessment of an
individual’s abilities and would not conflict with
a functional approach to assessing capacity.
Limitations of the study
The present study has a number of limitations
and the results must be interpreted with caution.
Although the ACQ would appear to have face
and content validity, obvious questions arise.
Do the results presented really reflect a valid
assessment of individuals’ abilities to make
informed choices ? What might the impact of the
altered scoring criteria have on any validity
data ? Ideally, a second independent set of data
is required for cross-validation, but no existing
standardised measures of capacity exist against
which the ACQ can be validated. One way of
attempting this may be to compare an indiv-
idual’s ability to consent to the treatment
vignettes, as determined by this objective mea-
sure, against the subjective judgements of clinical
and legal professionals working in the field, such
as been done in the development of the
Competence Assessment for Standing Trial for
Defendants with Mental Retardation (CAST-
MR ; Everington, 1990). Studying the ability of
people with a learning disability to consent
when they undergo real interventions, rather
than relying on hypothetical vignettes may also
be interesting. Real life clinical situations can
evoke feelings of fear, anxiety and powerlessness
and it is important that the effect of these on the
consent process are investigated and addressed.
A further limitation to this study is the size of
the sample, which necessitates caution when
drawing conclusions regarding the influence of
verbal and memory ability on ability to consent
to the treatment vignettes. It may also have been
interesting to investigate factors other than
verbal and memory ability that could influence
ability to consent, for example the opportunity
that people have to make decisions on a daily
basis. The investigation of such factors may help
in identifying ways of improving peoples’ ability
to make decisions.
Conclusions
There are obvious risks involved in the de-
velopment of such a measure as the ACQ, which
is concerned with judgements about thresholds
of capacity to consent. However, clinicians are
increasingly called upon to make decisions about
the capacity of individuals in their care to make
decisions for themselves and there are no existing
tools to help them do so. The ACQ is a first
attempt at addressing this complex issue and
goes some way to highlighting associated factors.
It is hoped that this may enable more systematic
decisions to be made concerning the ability of
people with a learning disability to make
decisions regarding treatment. It is difficult to
assess the validity of this type of assessment due
to a lack of recognized standards of measure-
ment. However, these complex issues must be
raised for discussion if further progress is to be
made in this area.
Copies of the Ability to Consent Questionnaire are
available from the first author.
REFERENCES
Appelbaum, P. S. & Grisso, T. (1988). Assessing patient’s capacities
to consent to treatment. New England Journal of Medicine 319,
1635–1638.
Appelbaum, P. S. & Grisso, T. (1995). The MacArthur Treatment
Competence Study I. Mental illness and competence to consent to
treatment. Law and Human Behavior 19, 105–126.
Arscott, K., Dagnan, D. & Kroese, B. (1998). Consent to
psychological research by people with an intellectual disability.
Journal of Applied Research in Intellectual Disabilities 11, 77–83.
Arscott, K., Kroese, B. & Dagnan, D. (1999). Knowledge that people
with learning disabilities have of their own medication. (In
preparation.)
In Re C (adult : refusal of treatment) [1994] 1 WLR 290.
Clements, J. (1987). Severe Learning Disability and Psychological
Handicap. John Wiley & Sons : Chichester.
 Assessing ability to consent to treatment
Cohen, J. (1960). A coefficient of agreement for nominal scales.
Educational and Psychological Measurement 20, 37–46.
Clary, C., Dever, D. & Schweizer, E. (1992). Psychiatric inpatients’
knowledge of medication at hospital discharge. Hospital and
Community Psychiatry 43, 140–144.
Curran, J. & Hollins, S. (1994). Consent to medical treatment and
people with learning disabilities. Psychiatric Bulletin 18, 690–693.
Department of Health and Welsh Office (1993). Mental Health Act
Code of Practice (1983). HMSO : London.
Dunn, L. M., Dunn, L. M., Whetton, C. & Pintilie, D. (1982). British
Picture Vocabulary Scale Short Form. NFER-Nelson Publishing
Co. : Windsor.
Ellis, N. R., Deacon, J. R. & Woodridge, P. W. (1985). Structural
memory deficits of mentally retarded persons. American Journal of
Mental Deficiency 89, 393–402.
Everington, C. T. (1990). The Competence Assessment for Standing
Trial for Defendants with Mental Retardation (CAST-MR) : a
validation study. Criminal Justice and Behavior 17, 147–168.
Farrow, S. (1992). How much do they know ? A study into patient’s
knowledge of drugs. Professional Nurse 8, 118–122.
Fitten, L. J., Lusky, R. & Hamann, C. (1990). Assessing treatment
decision-making capacity in elderly nursing home residents. Journal
of the American Geriatrics Society 38, 1097–1104.
Flesch, R. (1948). A new readability yardstick. Journal of Applied
Psychology 32, 221–233.
Grisso, T., Appelbaum, P. S., Mulvey, E. P. & Fletcher, K. (1995).
The MacArthur Treatment Competence Study III. Abilities of
patients to consent to psychiatric and medical treatments. Law and
Human Behavior 19, 149–174.
Kiyingi, K. S. (1993). How much do outpatients know about drugs
prescribed to them ? A pilot study. Papua New Guinea Medical
Journal 36, 29–32.
Law Commission (1991). Mental Incapacitated Adults and Decision-
Making : An Overview (Consultation paper no. 119). HMSO :
London.
1375
Law Commission (1993). Mental Incapacitated Adults and Decision-
Making : Medical Treatment and Research (Consultation paper no.
129). HMSO : London.
Law Commission (1995). Mental Incapacity : Item 9 of the Fourth
Programme of Law Reform : Mentally Incapacitated Adults
(Consultation paper no. 231). HMSO : London.
In Re MB (medical treatment) [1997] 2 FLR, CA.
March, P. (1992). Do photographs help adults with severe mental
handicaps to make choices ? British Journal of Mental Subnormality
28, 122–128.
Morris, C. D, Niederbuhl, J. M. & Mahr, J. M. (1993). Determining
the capability of individuals with mental retardation to give
informed consent. American Journal on Mental Retardation 98,
263–272.
Murphy, G. H. & Clare, I. C. H. (1995). Adult’s capacity to make
decisions affecting the person : psychologist’s contribution. In
Handbook of Psychology in Legal Contexts (ed. R. Bull and D.
Carson), pp. 97–128. John Wiley & Sons : Chichester.
Turnbull, H. R. (1977). Consent procedures. A conceptual approach
to protection without overprotection. In Research to Practice in
Mental Retardation : Care and Intervention, Vol. I (ed. P. Mittler),
pp. 65–70. University Park Press : London.
Tymchuck, A. J. & Ouslander, J. G. (1990). Optimizing the informed
consent process with elderly people. Educational Gerontology 16,
11–23.
Venesey, B. A. (1994). A clinician’s guide to decision making capacity
and ethically sound medical decisions. American Journal of Physical
Medicine and Rehabilitation 73, 219–226.
Wilson, B. A. & Ivani-Chalian, R. (1995). Performance of adults with
Down’s syndrome on the Children’s Version of the Rivermead
Behavioural Memory Test : a brief report. British Journal of
Clinical Psychology 34, 85–88.
Wilson, B. A., Ivani-Chalian, R. & Aldrich, F. (1991). The Rivermead
Behavioural Memory Test for Children Aged 5–10 years : Manual.
Thames Valley Test Co. : Flempton, Bury St Edmunds.