REVIEW ARTICLES |
South London and Maudsley NHS Trust, and Academic Department of Psychological Medicine, Institute of Psychiatry, London
Academic Department of Psychological Medicine, Institute of Psychiatry, London
Health Service and Public Health Research, Institute of Psychiatry, London
Health Sciences Research Institute, University of Warwick
Health Service and Public Health Research, Institute of Psychiatry, London
Academic Department of Psychological Medicine, Institute of Psychiatry, Kings College, London, UK
Correspondence: Professor Matthew Hotopf, Department of Psychological Medicine, Institute of Psychiatry, Weston Education Centre, 10 Cutcombe Road, London SE5 9RJ, UK. Tel: +44 (0) 20 7848 0778; fax: +44 (0) 20 7848 5408; email: m.hotopf{at}iop.kcl.ac.uk
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Aims To describe the clinical epidemiology of mental incapacity in patients with psychiatric disorders, including interrater reliability of assessments, frequency in the psychiatric population and associations of mental incapacity.
Method Cross-sectional studies of capacity to consent to treatment for psychiatric patients were systematically reviewed from Medline, EMBASE and PsycInfo databases. Information on the reliability of assessments, frequency and associations of mental incapacity was extracted.
Results Out of 37 papers reviewed, 29 different capacity assessment tools were identified. Studies were highly heterogeneous in their measurement and definitions of capacity. Interrater reliabilities between tools were high. Studies indicate incapacity is common (median 29%) but the majority of psychiatric in-patients are capable of making treatment decisions. Psychosis, severity of symptoms, involuntary admission and treatment refusal were the strongest risk factors for incapacity.
Conclusions Mental capacity can be reliably assessed. The majority of psychiatric in-patients have capacity, and socio-demographic variables do not have a major impact but clinical ones do.
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The use of status approaches has numerous implications. Under mental capacity legislation treatments are only provided in the patients best interests (with particular attention paid to previously expressed wishes, including advance directives, which have legal weight), whereas under mental health legislation best interests do not have to be considered, although in practice many psychiatrists effectively apply a best interests test (Peay, 2003). Further, the use of a status approach means that the patient can be given a range of treatments, even if he or she might have capacity to refuse one or more of these. This has led some to suggest that current status-based approaches are anachronistic and unethical (Szmukler & Holloway, 1998) and that mental capacity and mental health legislation could be fused (Dawson & Szmukler, 2006).
A review of emergent case law literature in the USA (Grisso et al, 1997) has resulted in a four abilities model, namely the ability to express a choice about treatment; the ability to understand information relevant to the treatment decision; the ability to appreciate the significance of that treatment information for ones own situation; and the ability to reason with relevant information so as to engage in a logical process of weighing treatment options. Despite the influential work of the MacArthur Foundation (Grisso & Appelbaum, 1995a,b; Grisso et al, 1995), concern exists regarding the reliability of capacity assessments in individuals with a mental disorder, and the extent to which legislation that uses a capacity test covers the same or different groups of patients as mental health legislation which uses a status approach. Some have pointed to particular areas of perceived difficulty such as the area to appreciation, which may be difficult to operationalise (Saks et al, 2002; Breden & Vollmann, 2004).
Our aim was to make a systematic review of empirical, quantitative studies of mental capacity in order to answer the following three questions:
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Search strategy
Relevant research articles were identified from a systematic search of
electronic data-bases. These comprised PsycInfo (1967 to July 2006), Medline
(1996 to July 2006) and EMBASE (1980 to July 2006). The electronic database
search terms were divided into three sets: mental health legislation terms
(e.g. Mental Health Act, coercion, patients rights), disorder terms
(e.g. schizophrenia) and capacity terms (e.g. incompetence, capacity,
autonomy). The titles and abstracts of all articles generated were examined on
the above inclusion and exclusion criteria. If the reviewer was uncertain as
to whether an article fulfilled these criteria, the full paper was requested.
The main reviewer was D.O. and his decision to include or exclude studies was
reviewed for 100 abstracts by G.O. There were disagreements in 10 papers but
further examination indicated none would have been eligible for the final
review. The interrater reliability of reviewers was good (
=0.72). These
searches were augmented by personal correspondence with experts on mental
capacity research. Experts were identified from the investigators prior
knowledge and a delegate list from a recent UK seminar which had advertised
for researchers working on this area and included several international
speakers. The International Journal of Law and Psychiatry was
hand-searched from the first to the most recent issue. Finally, the
bibliographies of retrieved articles were used to identify further
articles.
Data analysis
Articles were categorised and data extracted corresponding to our three
main questions. We extracted data from the full-length articles using forms to
ensure the process was standardised. D.O. performed the data extraction but
all studies were checked independently by M.H. As the papers were
heterogeneous a formal meta-analysis was not attempted. Where possible we
present median values and interquartile ranges. Where the data provided were
sufficient to calculate a kappa value, we did so in order to provide a uniform
measure of interrater reliability.
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Capacity assessments
The included articles reported many different methods for assessing
capacity. Three used vignettes (Grisso
& Appelbaum, 1995b;
Grisso et al, 1995;
Vellinga et al,
2004), which present the participant with a hypothetical patient
facing a treatment dilemma, about which the participant is then asked a series
of questions. Fourteen devised assessments of capacity for a specific
procedure, for instance capacity to consent to electroconvulsive therapy,
having a blood test or admission to a psychiatric ward (Appelbaum et
al, 1981,
1998;
Roth et al, 1982;
Norko et al, 1990;
Grisso & Appelbaum, 1991;
Janofsky et al, 1992;
Bean et al, 1994,
1996;
Poythress et al,
1996; Tomoda et al,
1997; Paul & Oyebode,
1999; Wong et al,
2000,
2005;
Vollmann et al,
2003). Sixteen (Hoffman &
Srinivasan, 1992; Grisso
et al, 1997; Melamed
et al, 1997; Tomoda
et al, 1997; Kitamura
et al, 1998; Palmer
et al, 2002; Bellhouse et al,
2003a,b;
Lapid et al, 2003;
Vollmann et al, 2003;
Cairns et al,
2005a,b;
Howe et al, 2005;
Jacob et al, 2005;
Koren et al, 2005;
Beckett & Chaplin, 2006)
used more flexible assessment methods, designed for use with any treatment
decision. Studies generally framed capacity either in binary terms (i.e.
present or absent for a specific decision) or as a continuous variable
measured on a dimensional scale. A third approach adopted by some
(Kitamura et al,
1998; Paul & Oyebode,
1999) was to describe the participants ability to meet
increasingly stringent (binary) tests of capacity. Such studies combined
aspects of both the multidimensional and binary approaches.
Reliability of capacity assessments
Seventeen studies reported interrater reliability of competency
assessments. These had a median sample size of 56 participants (interquartile
range 14–62). These studies could be categorised under three broad
themes:
Where available, we report agreement using Cohens kappa, which is used as a measure of reliability taking into consideration the level of agreement expected by chance. Kappa takes a value between –1 and 1, and we define kappa scores as follows (Landis & Koch, 1977): <0, poor; 0–0.2, slight; 0.2–0.4, fair; 0.4–0.6, moderate; 0.6–0.8, substantial; 0.8–1, almost perfect.
Reliability of binary assessment of mental capacity using interviews
Five studies (Table 1)
assessed mental capacity using two or more raters administering the same
structured or semi-structured interview
(Roth et al, 1982;
Wong et al, 2000;
Bellhouse et al,
2003a,b;
Cairns et al,
2005b). Methods mainly involved raters assessing the same
videotaped or transcribed interview performed by a single interviewer,
although one paper described the results of two interviews performed by
separate interviewers (Cairns et
al, 2005b). Assessments used a variety of methods:
one (Roth et al,
1982) used a derivative of a 15-item questionnaire
(Roth et al, 1977);
one used the MacArthur Competence Assessment Tool for Treatment
(MacCAT–T) (Cairns et al,
2005b) and one used a semi-structured interview adapted
from the MacCAT–T (Wong et
al, 2000). Two papers described interrater reliability on two
different decisions (admission and treatment) in similar samples (Bellhouse
et al,
2003a,b),
using a checklist derived from English legal definitions. Kappa values ranged
from moderate to almost perfect (median
=0.81 IQR 0.75–0.82). These results suggest that when a
consistent approach is taken to the assessment of mental capacity, two or more
raters can make a binary assessment with a high level of agreement.
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View this table: [in a new window] | Table 1 Interrater reliability of mental capacity assessments using same assessment |
Binary decisions comparing a clinicians assessment and that made by a clinical researcher using a mental capacity tool
Six studies (Bean et al,
1996; Tomoda et al,
1997; Vollmann et al,
2003; Vellinga et al,
2004; Cairns et al,
2005b; Beckett &
Chaplin, 2006) assessed agreement between an interviewer
performing a structured or semi-structured mental capacity assessment and a
clinicians view of the patients mental capacity. The kappa
values ranged from slight to substantial, (median
=0.45, IQR 0.39–0.66). This suggests that when formal assessments
are compared with clinical impressions, agreement is well above chance, but
not as high as when two raters are using the same assessment tool. Clinicians
universally reported fewer patients lacking mental capacity than did
researchers.
Other studies comparing agreement using dimensional scales
Eleven studies addressed interrater agreement on dimensional scales
(Norko et al, 1990;
Grisso & Appelbaum, 1991;
Janofsky et al, 1992;
Bean et al, 1994;
Grisso et al, 1995,
1997;
Palmer et al, 2002;
Vollmann et al, 2003;
Cairns et al,
2005b; Wong et
al, 2005; Appelbaum &
Redlich, 2006). These studies are difficult to summarise, since
they tend to present correlation coefficients between raters on dimensional
scales, or give kappa values for sub-scales of multidimensional scales.
Deserving particular mention are the studies of Grisso and Appelbaum on the
development of the MacCAT–T and related measures (Grisso et al,
1995,
1997), which present detailed
analyses of interrater agreement for each of the dimensions of the
MacCAT–T and show that high interrater correlations are the rule.
Reliability indices were generally similar for each sub-scale of the
MacCAT–T, suggesting that there is no single particularly
hard-to-measure dimension (Grisso et
al, 1997; Palmer et
al, 2002; Vollmann et
al, 2003; Cairns et
al, 2005b).
Frequency of mental incapacity in psychiatric patients
Admission to psychiatric units
We identified five studies that assessed mental capacity in relation to
admission to a psychiatric unit (Appelbaum et al,
1981,
1998;
Norko et al, 1990;
Poythress et al,
1996; Bellhouse et al,
2003a). One British study
(Bellhouse et al,
2003a), described a mixed clinical population of patients
and found that 67% had mental capacity to make the decision. Three studies
(Appelbaum et al,
1981,
1998;
Norko et al, 1990)
described capacity to make this decision among voluntary patients admitted to
psychiatric hospital. It is difficult to summarise the results of these
studies since each presents more than one measure of incapacity; however,
approximately 30–50% of participants scored in a range that suggests
they were competent to make decisions, a sizeable minority scored in an
intermediate range, and as many as 50%
(Norko et al, 1990)
had significant impairments of mental capacity despite accepting voluntary
admission. One study (Poythress et
al, 1996) described patients who were brought to hospital on
a court order (of whom half subsequently accepted informal admission), and
found that 55% had an impairment of capacity on a stringent definition and 35%
had impairment on a less stringent definition.
Psychiatric in-patients: other treatments
Of the remaining studies of psychiatric patients, most described treatment
for diverse interventions (Grisso &
Appelbaum, 1991; Hoffman &
Srinivasan, 1992; Janofsky
et al, 1992; Grisso et al,
1995,
1997;
Billick et al, 1996;
Melamed et al, 1997;
Tomoda et al, 1997;
Kitamura et al, 1998;
Melamed et al, 1999;
Bellhouse et al,
2003b; Vollmann
et al, 2003; Vellinga
et al, 2004; Cairns
et al, 2005b;
Jacob et al, 2005;
Beckett & Chaplin, 2006),
whereas a few focused on either antipsychotic medication
(Paul & Oyebode, 1999;
Wong et al, 2005) or
electroconvulsive therapy (Roth et
al, 1982; Bean et
al, 1996). In some studies the population was well defined,
and a true cross-sectional study of consecutive patients had been performed.
In others the population under study was much less well characterised, and
convenience samples were used. For those 12 studies that provided a binary
(present/absent) rating of mental capacity in the various psychiatric
in-patient groups, estimates ranged from 10% to 95% of the participants
lacking capacity (Table 2).
However, all but two studies estimated that less than half of psychiatric
in-patients lacked capacity, and the median value was 29% (IQR
22–44).
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View this table: [in a new window] | Table 2 Frequency of mental capacity among psychiatric in-patients |
Specific psychiatric diagnoses
Four studies (Grisso & Appelbaum,
1995c; Grisso et
al, 1997; Vollmann et
al, 2003; Appelbaum &
Redlich, 2006) presented the results of capacity assessments for
patients with psychiatric diagnoses separately. Three used the MacCAT–T,
and compared participants with schizophrenia or depression, all finding that
impairments in mental capacity were much more common in the schizophrenia
group. The MacArthur study (Grisso et
al, 1997) found that 52% of patients with schizophrenia had
impaired capacity, as opposed to 24% of those with depression. This study gave
a further detailed breakdown of areas of difficulty, indicating that when
individuals with schizophrenia had difficulties in decision-making, their
appreciation, understanding and reasoning could all be affected. In contrast,
decision-making difficulties in depression were mainly related to difficulties
in appreciation. The third study (Vollmann
et al, 2003) reported a remarkably consistent result: 53%
of in-patients with schizophrenia were judged to lack capacity, as opposed to
20% of those with depression.
Associations of mental incapacity in psychiatric patients
Twenty-seven studies described associations of mental incapacity in
psychiatric in-patients. These papers presented a range of variables,
including socio-demographic factors (such as age, gender, educational level
and ethnicity) as well as patient variables (such as cognitive abilities and
whether the person was accepting or refusing treatment).
Socio-demographic variables
Fourteen studies (Appelbaum et al,
1981,
1998;
Norko et al, 1990;
Hoffman & Srinivasan,
1992; Bean et al,
1996; Billick et al,
1996; Grisso et al,
1997; Melamed et al,
1997; Paul & Oyebode,
1999; Palmer et al,
2004; Cairns et al,
2005a; Jacob et
al, 2005; Wong et
al, 2005; Beckett &
Chaplin, 2006) presented results on gender, and none of these
indicated an association. Thirteen studies presented results on age, with ten
(Appelbaum et al,
1981; Billick et al,
1996; Grisso et al,
1997; Melamed et al,
1997; Palmer et al,
2004; Appelbaum & Redlich,
2006; Beckett & Chaplin,
2006; Cairns et al,
2005a; Jacob et
al, 2005; Wong et
al, 2005) describing no association and three
(Roth et al, 1982;
Norko et al, 1990;
Appelbaum et al, 1998)
describing an association with increasing age and mental incapacity. Results
on socio-economic status were scarce, but of the four studies presenting
associations, two described an association between mental incapacity and lower
socio-economic status (Grisso &
Appelbaum, 1995b;
Roth et al, 1982),
and two described no such association
(Billick et al, 1996;
Grisso et al, 1997).
For educational attainment, two studies showed an association between
incapacity and lower educational status
(Roth et al, 1982;
Wong et al, 2005)
whereas the remaining eight showed no association
(Grisso & Appelbaum, 1991;
Billick et al, 1996;
Kitamura et al, 1998;
Paul & Oyebode, 1999;
Palmer et al, 2004;
Cairns et al,
2005a; Appelbaum &
Redlich, 2006; Beckett &
Chaplin, 2006). Seven studies assessed ethnic group, with six
finding no association (Norko et
al, 1990; Billick et
al, 1996; Grisso et
al, 1997; Appelbaum et
al, 1998; Paul &
Oyebode, 1999; Jacob et
al, 2005). The one exception
(Cairns et al,
2005a) showed an association between Black and minority
ethnic group and mental incapacity, but the Black and minority ethnic group
consisted of more individuals with psychotic illness and once this was
controlled for the effect of ethnicity was lost.
Clinical variables
The other main variables to have been examined in the psychiatric studies
were broadly clinical. When groups of patients with mixed diagnoses were
examined, it was almost universally shown that capacity was more often
impaired in individuals with psychotic illness than in individuals with
non-psychotic illness (usually depressive disorder)
(Grisso & Appelbaum,
1995c; Bean et
al, 1996; Poythress
et al, 1996; Bellhouse
et al, 2003a;
Vollmann et al, 2003;
Appelbaum & Redlich, 2006).
Most studies (Grisso & Appelbaum,
1995b; Billick et
al, 1996; Grisso et
al, 1997; Cairns et
al, 2005a; Howe
et al, 2005; Jacob
et al, 2005; Wong
et al, 2005; Beckett
& Chaplin, 2006) although not all
(Paul & Oyebode, 1999)
– showed that severity of psychopathology was also associated with loss
of capacity. Perhaps unsurprisingly, individuals who refused treatment were
more often considered to be lacking capacity compared with those who accepted
it (Roth et al, 1982;
Bean et al, 1996;
Melamed et al, 1997;
Jacob et al, 2005;
Wong et al, 2005) and
a corresponding feature is that patients admitted involuntarily were more
likely to lack capacity (Hoffman &
Srinivasan, 1992; Bean et
al, 1996; Poythress
et al, 1996; Melamed
et al, 1997; Appelbaum
et al, 1998; Cairns
et al, 2005a). Few studies of psychiatric
patients have assessed the cognitive underpinnings of mental incapacity, but
one intriguing study (Koren et
al, 2005) showed that although problems with capacity were
weakly related to performance on the Wisconsin Card Sorting Test (a measure of
executive function), performance on a metacognitive scoring
system was much more closely related. The meta-cognitive scoring system
emphasised the level of confidence patients had about their performance, and
the degree to which this was at odds with actual performance was predictive of
poor performance on the MacCAT–T.
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The second question related to the frequency of incapacity to make key treatment decisions among patients with psychiatric disorders. Taking the median values as an approximate estimate, the results of the reviewed studies indicate that of in-patients with psychiatric disorders, a sizeable proportion – usually the majority – are capable of making treatment decisions. Indeed, the frequency of incapacity in psychiatric in-patients found in the reviewed studies did not differ greatly from that in general hospital in-patients (Raymont et al, 2004). The consistency of estimates of incapacity in psychiatric in-patients is striking, given the diverse nature of the populations studied. Half the studies estimated the frequency of participants lack of capacity to be within the range 22–44%. Similarly, the two studies to report on rates of incapacity in schizophrenia and depression found almost exactly the same rates, despite one being conducted in the USA and the other in Germany, where differences in healthcare systems might have led to differences in patient characteristics. This suggests that although diverse measures of mental capacity have been used, they are capable of making fairly consistent estimates.
The frequency of incapacity in voluntary patients when consenting to admission was remarkably high. This leads to a potential dilemma, as individuals lacking capacity may acquiesce to admission, but may lack protections that an admission under a legal framework would afford. Such patients may, to some extent, feel coerced into accepting admission, presumably since they felt that if they did not agree to an admission they would be detained anyway. Finally, the British studies of mental capacity (Bellhouse et al, 2003a; Cairns et al, 2005a) in those detained under the Mental Health Act 1983 indicated that a sizeable proportion have capacity to accept or refuse admission to hospital. Further work needs to be done to understand the implications of capacity-based mental health legislation for these individuals.
Mental capacity is not associated with any individual socio-demographic variable apart from advancing age. It is unclear why this should be, but it may be driven by cognitive decline or increased negative symptoms in older patients with psychotic illness. Given that mental capacity assessments are value-laden, it is reassuring that neither gender nor ethnic group has an effect; associations with educational level and social class are inconsistent. The clinical and legal variables associated with mental incapacity in the psychiatric groups should come as no surprise – psychosis, illness severity, involuntary admission and treatment refusal are all consistently reported as risk factors.
Limitations of our review
The most serious problem of a summary of capacity is that it is by nature a
functional definition and to describe the frequency in a specific treatment
setting is to ignore the fact that patients may have capacity for some
decisions and not for others. It is likely that the variation in the results
presented here stems from the heterogeneity of the patient groups, the range
of capacity assessment tools used, the different legal standards for capacity
assessment and the differences in treatment choices presented to participants.
Furthermore, frequency of capacity in some of the primary research was not the
main aim of the study and was reported as an incidental finding. Studies were
often small, and many were not truly cross-sectional in that they did not
define a clear population and sample from it, but instead used convenience
samples. Participation rates were frequently unreported, and when they were,
were often low. Little information was given about non-participants to allow
inferences to be made about non-participation bias.
The primary studies are – with some notable exceptions – particularly weak in their reporting of data on associations. Similar difficulties have been observed in other systematic reviews of descriptive studies (Altman, 2000). We suspect that many of the studies emphasise positive associations and fail to report negative ones. This might lead to a bias, which would mean that conclusions would be more conservative than possibly indicated here. Many studies are statistically under-powered and report negative findings without any consideration of the possibility that a genuine difference was not detected because the sample size was too small. Nevertheless, the generally consistent negative findings in relation to demographic variables probably do reflect a true lack of association.
There are potential limitations of the review methods presented here. This review represents a novel use of systematic review methods, akin to recent developments in summarising information in diagnostics (Straus, 2006). There is a less well-trodden methodology for such reviews compared with reviews of randomised controlled trials. We excluded non-English language papers, and despite considerable effort might have missed relevant eligible papers owing to the diverse language used to describe mental capacity. We did not apply a pre-defined assessment of quality, as we reasoned that the primary studies were too heterogeneous in their designs to do this in a meaningful way.
Implications
A number of implications arise from this body of research. First, we have
found that most studies report that most psychiatric in-patients are capable
of making key treatment decisions; given that as many as a third of general
medical patients lack mental capacity
(Raymont et al,
2004), this should remind clinicians, policy makers and the
general public that patients with psychiatric disorders are not intrinsically
different and this may be important in campaigns against stigma. Equally
important is the finding that many in-patients with psychiatric disorder lack
capacity and there is a tendency for clinicians to underestimate this
(especially when patients are accepting treatment) relative to research
estimates. This underestimate may have the effect of underestimating clinical
and social need. Second, studies are consistent in showing the reliability of
mental capacity assessments, and these measurements are correlated with
indicators of clinical severity but not with demographic differences. This
indicates that mental capacity can be reliably measured, and also that it has
some criterion validity. These characteristics mean that it can, we believe,
be researched in a useful manner. Third, there is little information on the
points where mental capacity and mental health legislation do not overlap. The
information from informal admissions suggests that a high proportion of
patients may lack capacity – the question then is whether their
treatment in an in-patient psychiatric setting is acceptable. A recent ruling
by the European Court (HL v.
United Kingdom, 2005) that the informal hospitalisation of an
incompetent patient with intellectual disability was unlawful as he was
deprived of his liberty in the absence of required safe-guards (the Bournewood
case) suggests that mental health providers – in Europe at least –
will have to consider much more carefully the legal structures used in
healthcare settings which may be judged to deprive individuals of liberty.
Much less information exists on patients who have been detained under mental
health legislation but are thought to retain capacity; more information is
required on the nature of this group, the complexities of capacity assessment
within it and the consequences of overriding capable decisions regarding
treatment.
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