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
quires an ‘ understanding in broad terms of the
Questions regarding capacity to consent to nature and likely effects of what is to take place ’
treatment frequently arise for people with a (Law Commission, 1991, p. 29). Current legal
learning disability (the current UK term broadly definitions for capacity can be found in case law
equivalent to the US definition of Mental and in the Mental Health Act Code of Practice
Retardation) and health professionals are in- (Department of Health and Welsh Office, 1993,
creasingly called upon to make determinations para. 15.10). The latter provides some guidance,
about an individual’s competence in this area. suggesting that to be able to consent an
However, universally accepted standards or individual must possess an ‘ adequate knowledge
guidelines for establishing an individual’s ability of the purpose, nature, likely effects and risks of
to consent to treatment have been lacking (Law [the] treatment including the likelihood of its
Commission, 1991 ; Venesey, 1994 ; Murphy & success and any alternatives to it ’ (p. 55).
Clare, 1995). The Law Commission (1991, 1993, However, this applies only to individuals with a
1995) has attempted to clarify the legal position mental disorder as defined by the Act, and it is
" Address for correspondence : Dr Katy Arscott, Tizard Centre, unclear what criteria should be used to assess
University of Kent at Canterbury, Canterbury, Kent CT2 7LZ. ‘ adequate ’ knowledge. In case law (see Re C,
1367
1368 K. Arscott and others

1994 ; Re MB, 1997) the current accepted test of decision with a rationale. The authors developed
capacity requires an individual to : (1) under- scoring protocols to determine whether the
stand sufficiently the nature, purpose and effects minimum levels of knowledge, capacity and
of the proposed treatment and retain the voluntariness required were achieved. Opera-
treatment information ; (2) believe it ; and (3) tional definitions of what was considered to be
assess the information in arriving at a choice. adequate knowledge were based around the four
Although this test has gained currency in American legal criteria outlined above. Despite
England and Wales, no objective tests for the authors’ aim to allow maximum self-
measuring capacity to consent to treatment have determination the measure proved to be ex-
been suggested and clinicians frequently turn to tremely stringent with only six out of 15
their own and colleagues’ subjective impressions individuals (40 %) with mild learning disabilities
of an individual’s capacity (Law Commission, and one out of 15 (6n7 %) people with severe
1991). learning disabilities being deemed capable of
The law concerning consent to treatment is giving their consent to treatment.
more developed in the USA, the criteria being It is important when developing tests of
more stringent than in England and Wales. In capacity to consent to take into consideration
parts of the USA informed consent must be the particular difficulties that people with a
given for treatment. It has been suggested that learning disability may experience when making
there are three major components to informed decisions about treatment (Department of
consent, these are : (1) the possession of sufficient Health and Welsh Office Mental Health Act
information relevant to the decision to be made ; Code of Practice, 1993 ; Murphy & Clare, 1995).
(2) the capacity to make the decision and to For people with a learning disability these
understand the consequences of the decision ; include deficits in verbal and memory abilities
and (3) having made the decision voluntarily (Ellis et al. 1985 ; Clements, 1987) ; difficulties
and free from coercion (Turnbull, 1977 ; Curran with problem solving, a tendency towards
& Hollins, 1994). Four legal criteria are com- acquiescence and suggestibility and problems
monly employed for assessing the ‘ capacity ’ with concreteness and abstracting from examples
element of informed consent, these are : (1) (Murphy & Clare, 1995) ; and difficulties pro-
communicating a choice about whether or not cessing complex sequences of information (Cle-
to have the treatment ; (2) understanding relevant ments, 1987). Morris et al. (1993) observed that
information ; (3) appreciating the current situ- deficits in memory, comprehension and infer-
ation and its consequences ; and (4) manipulating ential reasoning caused problems for their
information rationally (Appelbaum & Grisso, participants in expressing a rational decision.
1988). A number of authors have attempted to However, they do not appear to have taken
operationalize the above criteria, developing these factors into consideration in the develop-
measures to test the capacity of a number of ment of their measure.
client groups to consent to treatment, including It is proposed here that if the above issues are
older adults and people with a mental health addressed when assessing capacity it may be
problem (Fitten et al. 1990 ; Tymchuk & Ous- possible to facilitate more people with a learning
lander, 1990 ; Appelbaum & Grisso, 1995 ; Grisso disability in making competent decisions about
et al. 1995). treatment. It is also argued that the criteria used
One such measure has been developed for use by Morris et al. (1993) are unnecessarily stringent
with people with a learning disability (Morris et and could be relaxed to adhere more closely to
al. 1993). The ability to consent to treatment the ‘ broad terms ’ understanding required by
was measured using vignettes describing indiv- English law. Thus, this study adapts the Morris
iduals being offered behavioural, surgical and et al. measure, taking into consideration the
medical interventions. These were followed by a difficulties experienced by people with a learning
series of questions to assess peoples’ under- disability when making decisions about treat-
standing of the presenting problem ; the nature ment. The original measure is simplified with the
of the procedure ; the risks, benefits and alter- aim of making it easier for people to understand
natives ; their involvement in the decision- the information presented. The aim is not to
making process ; and their ability to arrive at a develop an absolute measure of capacity to
 Assessing ability to consent to treatment 1369

consent, but to provide clinicians with a tool (Wilson et al. 1991) has a number of subtests
that might assist them in making judgements that are analogous to memory tasks involved in
about the capacity of individual clients to normal daily life. It has been found to be
consent to treatment. The hypothesis that verbal suitable and useful for adults with Down’s
and memory ability will influence people’s ability syndrome (Wilson & Ivani-Chalian, 1995).
to consent to the treatment vignettes and to
respond to the individual components of ca- (3) The Ability to Consent Questionnaire
pacity to consent is then investigated. (ACQ)
The ACQ (adapted from Morris et al. 1993)
METHOD utilized Morris et al.’s three vignettes describing
Participants individuals being offered treatments requiring
informed consent. The vignettes described a
Participants were selected on a number of restrictive restraint procedure, the prescription
criteria. All were over 18 years of age, had the of psychotropic medication and a surgical
expressive language ability to answer simple procedure. The original vignettes ranged from
questions, possessed an attention span of at least 214–271 words (Flesch reading ease 77n9 to 86n4 ;
30 min, were taking medication and were willing fairly easy to easy) and each consisted of a brief
to be interviewed. Forty adults with a learning description of an underlying problem, a pro-
disability participated in the research, 22 (55 %) posed treatment and a review of the alternatives,
men and 18 (45 %) women (mean age 40n63, .. risks and benefits of the procedure. For the
9n98, range 20 to 57) from Social Education present study the original vignettes and their
Centres, Colleges and Employment Preparation mode of presentation were adapted in a number
Units in two small towns in the West Midlands. of ways in order to facilitate understanding.
Ninety per cent of participants achieved a British Although the length of the vignettes was similar
Picture Vocabulary Scale score that would place to the previous study (range 219–245 words), the
them in the bottom 1 % of the population ; two sentence structure and the wording for both the
people achieved scores at the 37th percentile. vignettes and the questions were changed and
Twenty-six (65 %) people lived in the family the American terminology was replaced. A
home, ten (25 %) lived in community homes, Flesch analysis (Flesch, 1948) conducted on
three (7n5 %) lived alone and one person (2n5 %) each vignette produced reading ease scores of
lived in hospital accommodation. 81n6 to 83n9, placing all vignettes in the ‘ easy ’ to
Measures read bracket (80–90). March (1992) has found
The following measures were administered. that the use of photographs can facilitate the
comprehension of information and three simple
(1) The short form of the British Picture line drawings were therefore introduced to
Vocabulary Scale (BPVS) accompany each vignette. The original vignettes
The BPVS (Dunn et al. 1982) is designed to of Morris et al. were hypothetical and presented
measure the extent of an individual’s English in the second person (i.e. the participants were
receptive vocabulary and is closely related to placed as the subject of the vignettes). The
verbal IQ. Participants are read a list of words. present study placed the vignettes in the third
After each word four line drawings are pre- person, introducing fictitious characters as the
sented, one of which illustrates the word. subject of the stories. Participants had to say
Participants are required to point to the picture what decisions they thought the person in the
which they think depicts this word. The scale vignette should make if facing a particular
does not require participants to read or write treatment.
and responses can be gestural. Three protocols were developed in the original
study, one for each of the vignettes. Each
(2) The route recall and story recall memory protocol consisted of five major questions
items taken from the Rivermead Behavioural designed to tap the abilities seen as important in
Memory Test for Children (RBMT-C) consent (Morris et al. 1993). These explored an
These were chosen to test short- and long-term individual’s understanding of : (1) the presenting
verbal and spatial memory. The RBMT-C problem ; (2) the nature of the proposed in-
1370 K. Arscott and others

tervention ; (3) the alternatives, risks and bene- search is addressed further in a separate report
fits ; (4) their involvement in the decision-making (Arscott et al. 1998).
process, their rights and the options available ; In the first interview the ACQ was admin-
and (5) their ability to express a clear decision istered, with the three vignettes being presented
with a rationale. The present study utilized the to participants in random order. The fictitious
same question areas, but questions were simpli- person in the vignettes was a woman for 20 of
fied and some were asked in two parts to make the participants and a man for the other 20
them more simple to process and understand. participants. Vignettes were read once all the
In the original study participants were given a way through, accompanied by line drawings to
score of 1 or 0 for each question. A score of 0 on illustrate the text. They were then read for a
any one of the five questions resulted in an over- second time, in three sections : section one
all determination of ‘ not capable ’ for that included information about the nature of the
vignette. For the present study these guidelines problem ; section two contained information
for scoring were adapted to allow a more sensi- about the various interventions that had been
tive judgement of each component of capacity. tried with no success ; and section three included
Participants were able to score 0, 1 or 2 for each information about an alternative treatment with
question depending on the extent to which their its risks and benefits. Each section was again
answers indicated a full understanding of the accompanied by line drawings and the related
material. A failure to score at least 1 on each questions were asked after each chunk of
question would be considered to indicate an information had been presented. Participants
overall lack of capacity to consent to the vignette were questioned further if they did not give an
procedure. Although participants were required answer scoring maximum points and their
to have some key understanding of the treatment answers were recorded verbatim. Acceptable
vignette and the decision-making process, this non-directional probes included statements such
was not as detailed as that required by the as ‘ Is there anything else that could be tried ? ’ if
previous study. For example, in order to score 2 only one example of an alternative intervention
on the questions regarding the consequences of was given, or ‘ Is there anything else you could
refusing medication participants had to state do ? ’ if a participant did not fully explain what
two things that could happen in they said ‘ no ’ to they could do about the proposed intervention.
the proposed intervention, but to score 1 they It was stressed to the participants that they
only had to mention one thing. In the previous could ask for information to be repeated at any
study the response scoring 1 would have led to time and that they could ask questions if they
further questioning, but if no further detail was did not understand something. Few people
given participants would be deemed unable to requested a further presentation or asked ques-
consent. Participants in the present study scored tions.
0 if they did not answer the question, gave a The second interview consisted of the short
clearly irrelevant or vague answer or provided form of the BPVS and the measure of memory
very little detail. In order to test the reliability of ability. The short-term memory items were
the new scoring protocol, a second rater (the administered first, followed by the BPVS, and
second author) independently rated participant’s finally the long-term memory items.
responses to each question for each vignette.
The questionnaires from 14 subjects (35 %) were
RESULTS
randomly selected for reliability coding.
All statistical calculations were computed using
Procedure the SPSS statistical package. Cohen’s kappa
Interviews took place at the day centre and (Cohen, 1960) was calculated to test the reli-
consisted of two 30 minute sessions. The ability of the scoring protocols in identifying
interviewer was observant of participants’ reac- overall ability to consent to each type of vignette
tions at all times to ensure that people were not and to test the reliability of the scoring protocols
becoming distressed and checked at regular across each question.
intervals to see if they wanted to stop. The issue Kappas between raters for whether people
of consent to participate in psychological re- 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 treatment vignette. More people were able to
surgical vignette. Kappas between raters for consent to the surgical vignette (N l 19, 47n5 %)
each question fell between 0n7 and 0n96, mean l than to either the medical vignette (N l 16,
0n85, .. 0n08. Therefore, a high level of agree- 40 %) or the restraint vignette (N l 12, 30 %).
ment was evident in identifying ability to consent
to all three vignettes and in the scoring on Individual question items
individual question items. This would suggest Table 1 shows the scores achieved on each
that the scoring system employed was reliable. question for each vignette. The difference in the
means across the six questions collapsed across
Overall scores all vignettes was examined using a one-way
Total scores on the ACQ ranged from 13 to 41 repeated measures analysis of variance
(mean l 27n9, .. l 6n96, maximum possible l (ANOVA). This analysis indicated that there
42). Total scores on each vignette were as was a significant main effect (F(6, 234) l 35n22,
follows : medication, mean l 9n15, .. l 2n79 ; P 0n0001). Post hoc comparisons using
restraint, mean l 8n63, .. l 2n46 ; surgical, Scheffe! ’s procedure were conducted to determine
mean l 10n10, .. l 2n84. Twenty-seven par- which means were different at the 0n05 level of
ticipants (67n5 %) had a modal score of 2, eight significance. A number of differences were
(20 %) had a modal score of 1 and three (7n5 %) identified. The most notable finding was that
had a modal score of 0. One participant (2n5 %) questions 5a and 5b were answered significantly
achieved equal numbers of 0s and 2s and one less well than all other questions, but did not
(2n5 %) achieved equal numbers of 0s and 1s. differ from each other. This would suggest that
Total memory scores ranged from 0 to 40n5 questions regarding rights, options and impact
(mean l 23n31), .. l 10n84 ; max. possible 72) of choices were consistently the most difficult
and total verbal scores ranged from 6 to 30 to answer.
(mean l 16n82, .. l 5n94 ; max. possible 31).
The influence of verbal and memory ability on
Capacity to consent to each treatment vignette individual question items
Fourteen (35 %) participants scored 0 on at least In order to determine whether verbal and
one question from each vignette. Ten (25 %) memory ability were related to participants’
achieved a score of above 0 for every question ability to give informed opinions regarding
on just one vignette, 11 (27n5 %) on two vignettes individual components of capacity to consent,
and five (12n5 %) on all three. Therefore, 26 a series of Pearson’s correlations was conducted
(65 %) of the participants could be construed (Table 2). Verbal ability was found to be
as able to give an informed opinion regarding all significantly correlated with the total scores on
aspects of capacity to consent for at least one 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 1373

that people with a learning disability (Arscott et and 5b were worded. It may be that the language
al. 1999), people with a physical illness (Farrow, used was difficult for people with a learning
1992 ; Kiyingi, 1993) and people with mental disability to understand and that minor alter-
health problems (Clary et al. 1992), generally do ations to the ACQ may go some way to
not possess sufficient information about the addressing this problem.
medication prescribed to them. This area may
benefit from further investigation. The influence of verbal and memory ability
Verbal ability was found to differ between the
Understanding of individual components of group of participants who were able to consent
consent to all three treatment vignettes and the group
Participants found certain questions easier to who were not. Memory ability was found to
answer than others. Questions addressing the differ between the group of participants who
nature of the problem, alternative interventions, were able to consent to the surgical and medical
the proposed intervention and the ability to vignettes and the group who were not. Both
make a decision were the easiest to answer. The verbal and memory ability were also found to be
most difficult questions to answer were those associated with each of the individual compo-
concerning participants’ legal rights and options nents of capacity to consent (except memory
regarding treatment, as well as the impact of ability with the question about the nature of the
their choice to have the treatment or to refuse it. problem). Clearly verbal and memory ability
It is important that these questions are included may be influential factors in an individual’s
in any assessment of capacity to consent to ability to consent to treatment. However, it is
ensure that people are making voluntary de- not suggested that information about an indi-
cisions. However, in the current study many vidual’s abilities in these areas should ever be
people did not appear to appreciate that they taken as a substitute for a full functional
could refuse treatment or to understand what assessment of capacity to consent. Instead, such
might happen if they did. Morris et al. (1993) knowledge may guide professionals in deter-
also found that many participants insisted that mining the level at which to pitch the infor-
they had no choice or that they would get mation that they present to clients. It follows
treatment no matter what they said. If people that if information were to be made even less
believe this when making hypothetical decisions dependent on verbal and memory ability, then
then it could be questioned whether they are more people with a learning disability may be
able to make truly voluntary decisions about able to understand enough information to be
genuine treatment situations. It is also likely deemed able to make decisions about treatment.
that people with a learning disability may not It is unclear at what point simplification of the
perceive that they are able to make a decision presented material involves reducing the criteria
that does not coincide with what the health required for consent to an unacceptable level.
professional thinks is best. Morris et al. believe However, it could be argued that such simpli-
that this is an area requiring more attention and fication places people with a learning disability
that people with a learning disability should be in a position of equality with the general
taught that they have a right to participate in population when faced with complex decisions.
treatment decisions and make alternative
choices. However, it is questionable whether Possible uses of the ACQ
education will be effective unless people with a The aim of this study was not to develop an
learning disability are also permitted to make absolute measure of capacity to consent, but to
fundamental life style decisions on a daily basis. provide clinicians with a tool which might assist
As the questions regarding the rights, options them in making judgements about the capacity
and the impact of choices were the most difficult of individual clients to consent to treatment. For
to answer, it would be interesting to explore example, a suggested use of the ACQ would be
whether any characteristics of an individual or as a first step in identifying areas where
their life-style made people more likely to answer individuals require further assistance to under-
these items adequately. Of course, it is also stand the information needed to make an
worth considering the way in which questions 5a informed decision regarding treatment. As high-
1374 K. Arscott and others

lighted previously, particular questions are likely and it is important that the effect of these on the
to pose greater difficulties for some clients and consent process are investigated and addressed.
these areas may require further attention when A further limitation to this study is the size of
presenting these clients with information. The the sample, which necessitates caution when
ACQ may also be used as one of a number of drawing conclusions regarding the influence of
assessments to assist clinicians in judgements verbal and memory ability on ability to consent
about an individual’s capacity to consent to a to the treatment vignettes. It may also have been
specific treatment. Rather than as an absolute interesting to investigate factors other than
measure of capacity it is likely to be more verbal and memory ability that could influence
helpful for the ACQ to be administered as one of ability to consent, for example the opportunity
a number of assessments which may combine to that people have to make decisions on a daily
facilitate clinicians when forming judgements basis. The investigation of such factors may help
about an individual’s ability to consent. Such a in identifying ways of improving peoples’ ability
battery may include tests of IQ, memory and to make decisions.
language ability in order to provide an indication
of an individual’s overall level of ability and to Conclusions
assist clinicians in determining the level at which There are obvious risks involved in the de-
to pitch information. It would also be important velopment of such a measure as the ACQ, which
to include a more specific assessment, similar to is concerned with judgements about thresholds
the ACQ but relating to the specific decision that of capacity to consent. However, clinicians are
the client is being asked to make. This would increasingly called upon to make decisions about
allow a more constructional assessment of an the capacity of individuals in their care to make
individual’s abilities and would not conflict with decisions for themselves and there are no existing
a functional approach to assessing capacity. tools to help them do so. The ACQ is a first
attempt at addressing this complex issue and
Limitations of the study goes some way to highlighting associated factors.
The present study has a number of limitations It is hoped that this may enable more systematic
and the results must be interpreted with caution. decisions to be made concerning the ability of
Although the ACQ would appear to have face people with a learning disability to make
and content validity, obvious questions arise. decisions regarding treatment. It is difficult to
Do the results presented really reflect a valid assess the validity of this type of assessment due
assessment of individuals’ abilities to make to a lack of recognized standards of measure-
informed choices ? What might the impact of the ment. However, these complex issues must be
altered scoring criteria have on any validity raised for discussion if further progress is to be
data ? Ideally, a second independent set of data made in this area.
is required for cross-validation, but no existing
standardised measures of capacity exist against Copies of the Ability to Consent Questionnaire are
which the ACQ can be validated. One way of available from the first author.
attempting this may be to compare an indiv-
idual’s ability to consent to the treatment
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