Royal Free and University College Medical School, London, UK
University of Otago, Dunedin, New Zealand
Correspondence: Professor M. King, Department of Psychiatry and Behavioural Sciences, Royal Free and University College Medical School, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK. E-mail: m.king{at}rfc.ucl.ac.uk
Funding detailed in Acknowledgements.
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ABSTRACT |
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Aims To evaluate whether use of advance directives by patients with mental illness leads to lower rates of compulsory readmission to hospital.
Method In a randomised controlled trial in two psychiatric services in inner London, 156 in-patients about to be discharged from compulsory treatment under the Mental Health Act were recruited. The trial compared usual psychiatric care with usual care plus the completion of an advance directive. The primary outcome was the rate of compulsory readmission.
Results Fifteen patients (19%) in the intervention group and 16 (21%) in the control group were readmitted compulsorily within 1 year of discharge. There was no difference in the numbers of compulsory readmissions, numbers of patients readmitted voluntarily, days spent in hospital or satisfaction with psychiatric services.
Conclusions Users' advance instruction directives had little observable impact on the outcome of care at 12 months.
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INTRODUCTION |
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Thomas Szasz was among the first to suggest a psychiatric will (Szasz, 1982). This rather narrowly expressed the patient's request for (or refusal of) involuntary psychiatric interventions in the future. However, advance directives may concern wider issues in treatment that have an impact on subsequent hospitalisation. Although patients' views are contravened during an involuntary admission, once insight is recovered patients may be able to define advance directives for their management, should similar circumstances recur. The patients' directives, however, would not prevent their receiving compulsory treatment in the future, as the authority provided by civil commitment orders to treat without consent takes priority. Nevertheless, patient-derived advance directives may have potentially beneficial effects on the process of care such as the therapeutic alliance, communication and continuity in community care (Dawson et al, 2001). Despite discussion about the role of such directives (Applebaum, 1991; Mester et al, 1994; Backlar, 1997; Ritchie et al, 1998; Geller, 2000; Swanson et al, 2000), there has been no definitive evaluation of their impact on the delivery of mental health services. Our hypothesis was that patient's advance directives, when disseminated in written form to keyworkers and general practitioners and included in patients' case records, would reduce the frequency of compulsory readmissions to hospital.
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METHOD |
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We allocated patients randomly using a block design, stratified according to whether this was the patient's first ever or subsequent sectioning. Blocks of twelve random combinations (six experimental, six control) were prepared and sealed in envelopes. Each research assistant telephoned an independent colleague in the trial centre, who chose the next envelope in each case. It was impossible to mask the research assistants to the patients' allocation as they were required to assist patients to make a directive in those allocated to the intervention group. However, systematic bias was unlikely as the primary outcome concerned compulsory hospital admission and was not based on any later assessment by the researcher.
Intervention group advance directives
The advance directive was provided in the form of a booklet entitled
Preferences for Care, which was given to patients in this group. The
front page contained the name of the patient and his or her general
practitioner, community psychiatric nurse, key-worker, consulting psychiatrist
and social worker. We included the trial centre's address in case the booklet
became lost. The booklet contained seven statements on future preferences for
treatment (see Appendix). The content of the directive was not intended to
address compulsory admission directly; rather, it aimed to give patients an
opportunity to consider their future treatment on a wider basis, perhaps
thereby increasing their trust and compliance and ultimately reducing the need
for compulsory treatment. We encouraged patients to complete these and sign
the directive. Patients who did not wish to write in the booklet themselves,
dictated their preferences to the researcher. A rider printed at the end of
the booklet indicated that professionals were not legally bound to comply with
the preferences for care, if, for instance, the patient was subsequently
recommitted. We asked each patient to keep the booklet in a safe place. We
gave copies to the keyworker and general practitioner as well as filing copies
with the hospital and general practice records. All patients received standard
community psychiatric care.
Control group usual care
All patients in the control group also received standard community
psychiatric care. This consisted of a coordinated care programme in which
psychiatric treatment was planned and provided by a multi-disciplinary
community psychiatric team.
Outcome measures
In order to evaluate the impact of advance directives on our primary
outcome, the rate of compulsory readmissions, we searched the hospital records
for data on voluntary and involuntary admissions for the 5 years before
baseline and the 12 months of follow-up. However, we also wished to examine
their effect on other secondary measures that are an integral part of the
objectives of community psychiatric care. These were: time spent in hospital
compulsorily or voluntarily; reported symptoms of mental illness; prescribing;
patients' satisfaction with service delivery; and patient's ability to take
decisions for themselves. Our measures at baseline were:
Twelve months after discharge we used:
We collected data on prescribing from patients' case notes.
Statistical analysis
We analysed the data using the Statistical Package for the Social Sciences
(SPSS, 1998). All patients
except for those never eventually discharged (see trial profile) were analysed
in the group to which they were allocated in an intention-to-treat analysis.
Our primary outcome was the number of people compulsorily readmitted under the
Mental Health Act during follow-up. In the analysis of other outcomes we made
group comparisons using standard t-tests for approximately normal
data, MannWhitney tests for ordinal non-parametric data and the
chi-squared statistic for categorical data. We report grouped medians for
ordinal non-parametric data. The grouped median is the median weighted by the
frequency of data in the adjacent categories. We used Cronbach's to
test the internal consistency of the adapted Hospital Service Satisfaction
Scale (
=0.9). Analyses of variance were performed on log-transformed
data. Where data were missing, we performed a sensitivity analysis using the
last observation carried forward.
Hospital data for the year before the study indicated that 50% of patients discharged from a compulsory admission were readmitted within 12 months, and that 60% of these readmissions were compulsory. We estimated that detecting a reduction in the rate of compulsory readmission to 10% or less in the advance directives group (compared with 30% in the control group) at 90% power and the 5% level of significance would require 80 patients in each group.
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RESULTS |
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Outcome
We obtained data on our principal outcome for all randomised patients. Five
patients were not discharged from hospital during the follow-up period and
were removed from the analysis. We conducted face-to-face assessments of 59
(75%) patients in the advance directives arm and 55 (71%) in the usual care
arm 12 months after discharge (Fig.
1). There was no difference in gender, age, ethnicity or primary
diagnosis between those interviewed at follow-up and those not contacted, nor
was there any difference in subsequent rate of involuntary admission between
those contacted and those not contacted at follow-up.
Fifteen participants (19%) in the experimental group and 16 (21%) in the
control group were readmitted to hospital under section within 1 year of
discharge (2=0.08, d.f.=1, P=0.8). There was no
significant difference between the groups in the numbers of subsequent
compulsory admissions, numbers of patients readmitted voluntarily, or days
spent in hospital (Table 4).
There was no difference in self-efficacy at follow-up (advance directives
grouped median 42.66; control arm grouped median 42.25).
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Scores on the Basis32 were skewed at baseline towards health and at follow-up towards illness. However, there was no indication on other parameters that the patients' clinical state had deteriorated by the time of follow-up. Analysis of covariance (controlling for baseline values) of Basis32 and Hospital Service Satisfaction scores for those interviewed at baseline and at follow-up showed no significant difference between the groups (Table 5). This finding was largely unchanged in a further analysis of covariance using last observation carried forward to account for missing data.
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Only 8 (13.5%) of 59 patients in the advance directives group interviewed at follow-up reported that they had found the directive useful. These patients considered that it helped other people to know that they had been ill and when they were relapsing; reminded them of things they could do to make life better; helped with reality testing; and enabled them to evaluate their illness. The consulting psychiatric physicians were concerned that the directives were yet another administrative burden. Although in favour of the trial, they believed that their management already took account of patients' wishes.
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DISCUSSION |
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Lack of impact of advance directives
There are several possible explanations for the lack of impact of advance
directives on services in our trial. First, were patients competent to
understand the role of an advance directive? Although not infallible,
specialised competency assessments have been suggested as a means of
determining whether patients could use advance directives
(Backlar, 1997;
Ritchie et al, 1998;
Srebnik & La Fond, 1999).
Patients entered our trial close to the date of their expected discharge and
therefore, although able to consent, might not have had the capacity to make
full use of the directives. Despite other clinical signs of recovery, patients
were more likely to self-report symptoms on the Basis32 at follow-up
than at baseline. This suggests that near discharge patients had less insight
into their problems (or were concerned to present themselves as being well)
than 1 year later, when they reported their difficulties more frankly. Thus,
their understanding of the directive at recruitment might not have been
optimal. Even when the capacity to understand is normal, denial or other
psychological mechanisms may prevent people from facing the implications of
their illness (Schwartz & Blank,
1986). At follow-up, several patients could not remember the
directive, also suggesting a reduced ability to concentrate at recruitment.
Against this explanation is that A.P. and A.J. were mental health
professionals with extensive experience of managing patients with psychotic
disorders, and were able to assess competency adequately at the time patients
were recruited.
Second, in both arms fewer patients than expected were compulsorily readmitted. Although this led to lower statistical power than predicted, the difference between trial arms in proportions of patients readmitted compulsorily was so small that inadequate power is unlikely to be an explanation.
Third, although our procedures for introducing the directives and ensuring that staff were aware of them met published recommendations (Backlar, 1997), professionals may have been unable or unwilling to incorporate them into their clinical work (Backlar, 1997; Swanson et al, 2000). Alternatively, they may already have incorporated patients' views adequately. Although there is evidence that professional staff may not comply with medical advance directives (Srebnik & La Fond, 1999), small studies of mental health advance directives have indicated that compliance can be good (Backlar & McFarland, 1996; Sutherby et al, 1999). However, the participating psychiatric units suffered the lack of resources typical of inner-city areas and the professionals were struggling to cope with the administration of the Care Programme Approach, which formalises the process of community psychiatric care in England and Wales. Frequent changes of keyworker might have led to confusion about the purpose of the directives or ignorance of their existence. Keyworkers in one psychiatric service were often not allocated before patients were discharged, which might also have reduced the impact of the directives. The directive was sometimes regarded as an administrative burden by staff, who assumed that their management already took account of patients' wishes. These difficulties, however, are not uncommon features of psychiatric services in large metropolitan areas, and are an expected part of any naturalistic setting in which advance directives are implemented.
Mental health services in many countries now prioritise user involvement (Department of Health, 1998). Unfortunately, use of the Mental Health Act may make patients fearful and suspicious of service personnel. Agreeing advance directives with their own mental health professionals may mean that they feel unable to be frank about their care with those who deliver it. In our trial, the directive was therefore drawn up with someone independent of the patient's care. To achieve such independence in routine settings, a patient advocate might be involved. However, this risks diminishing the treating professionals' sense of ownership or commitment to honour the terms of the directive.
Fourth, the directives might not have been practical. This is unlikely, as each one was drafted with the patient and any directive considered to be impractical was amended after discussion with staff. However, appropriate requests (such as a single room in hospital) may have been ignored because of limited resources in the service. We speculated that staff, fearing the potential legal implications of the directives, might even increase their use of commitment orders to over-ride instructions they regarded as hard to meet (Geller, 2000; Dawson et al, 2001). We found, however, that the rate of compulsory readmission for all patients in the trial was lower than expected.
A final explanation for our results may be a lack of sustained awareness of the directives throughout the 12 months of follow-up. As ours was a pragmatic trial, we delegated this process to the clinical team. We suggest that patients' advocates might best keep the directive uppermost in the minds of patients and their professionals.
Overall effects of the trial
Our results suggest that advance directives do not prevent involuntary
readmissions to hospital in people with serious mental illness. It is
possible, however, that the trial had an overall effect, as the rate for all
involuntary admissions went down. Although this drop may simply reflect a
secular trend in the trial area, it runs counter to the increased number of
involuntary admissions in England from 23 725 in 1996-1997, to 25 415
in 1997-1998 (Department of Health,
1999). This could be a classic Hawthorne effect: professionals in
both arms of the trial might have modified their behaviour in response to
being observed in a trial that concerned patients' preferences and subsequent
rehospitalisation. However, coupled with our observation that professionals
believed that they already took account of their patients' preferences, this
finding suggests that hospitalisation rates might be affected simply by
increasing providers' sensitivities to patients' wishes.
Explanatory v. pragmatic trial
An explanatory trial might have been a first step in our assessment of
advance directives in mental illnesses, but it is difficult to see how it
could be conducted. Restricting recruitment to a narrowly defined sample of
patients who fully comprehended the process would defeat our aim of reducing
undesirable pathways to in-patient care for more vulnerable patients.
Advance directives and outcomes
It appears that mental health care users' advance directives had little
impact on compulsory or voluntary readmission rates, clinical status or
satisfaction with care over 12 months. Nevertheless, it remains intuitively
desirable that patients whose psychiatric symptoms are in remission plan for
treatment in the event of loss of mental competence
(Rogers & Centifanti,
1991; Nazareth et al,
1995; Geller, 2000;
Swanson et al, 2000),
and such planning could form a part of a relapse prevention programme. Since
advance directives involve anticipatory planning for the future, they might
exert a beneficial effect on such factors as the therapeutic alliance and
communication. Even if rates of compulsory treatment were not affected, we
cannot rule out such possible beneficial effects. Thus, the impact of advance
directives on other aspects of care requires further study
(Srebnik & La Fond, 1999;
Geller, 2000).
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Clinical Implications and Limitations |
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LIMITATIONS
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APPENDIX |
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ACKNOWLEDGMENTS |
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This work was funded by the National Health Service (NHS) Executive, London Research and Development Programme. The views expressed are those of the authors and not necessarily those of the NHS Executive or the Department of Health. A.J. was part-funded by the Priory Hospitals Group. This work was supported by the following trusts: Royal Free Hampstead NHS Trust, the former Haringey Healthcare NHS Trust and Camden and Islington Community NHS Trust.
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Received for publication April 17, 2002. Revision received July 18, 2002. Accepted for publication July 31, 2002.
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