Addressing non-adherence to antipsychotic medication: a harm-reduction approach

„Addressing non-adherence to antipsychotic medication:
a harm-reduction approach
M . A . A L D R I D G E d i p h e ( n u r s i n g ) r m n b a ( h o n s ) b s c ( h o n s ) t h o r n
Primary Nurse, Early Interventions Unit, South London and Maudsley NHS Foundation Trust,
London, UK
Keywords: evidence-based practice,
medication management
Correspondence:
M. A. Aldridge
Reay House
Lambeth Hospital
108 Landor Road
London SW9 9NT
UK
E-mail: matthew.aldridge@slam.nhs.uk
Accepted for publication: 19 August
2011
doi: 10.1111/j.1365-2850.2011.01809.x
Accessible summary
• Many people decide not to take prescribed antipsychotics once they
are discharged from the hospital.
• Stopping antipsychotics suddenly without support may result in
harmful reactions and possible re-admission to the hospital.
• The ‘Non-Adherence Harm Reduction’ approach aims to reduce the
harm of stopping antipsychotics, by informing and supporting those
who make this personal decision.
• This approach values personal autonomy and may reduce the likelihood of harm and re-admission in those who choose not to adhere to
prescribed antipsychotics.
Abstract
This paper discusses the evidence base for interventions addressing
non-adherence to prescribed antipsychotics. A case study approach is
used, and the extent to which adherence improvement interventions
might be used in collaboration with a specific patient is considered. The
principles and application of harm-reduction philosophy in mental
health are presented in a planned non-adherence harm-reduction intervention. This intervention aims to acknowledge the patient’s ability
to choose and learn from experience and to reduce the potential harm
of antipsychotic withdrawal. The intervention evaluation method is
outlined.
Introduction
Treatment non-adherence remains one of the
greatest challenges in psychiatry (Nose et al. 2003).
This paper addresses non-adherence from both a
theoretical perspective and the practical stance of a
nurse based on a psychiatric inpatient unit in
London, England (referred to as ‘the unit’ in this
paper). A case study approach is used and various
approaches to addressing non-adherence with a
specific inpatient are considered and discussed.
This paper has been sectioned into two categories,
namely adherence improvement (including adherence therapy, antipsychotic long-acting injections
Journal of Psychiatric and Mental Health Nursing, 2011
© 2011 Blackwell Publishing 1and supervised community treatment) and nonadherence harm reduction (patient choice and harm
reduction). The philosophy and principles of harm
reduction, which is new in the context of mental
health (Hall 2007), are outlined and the application
of this approach to non-adherence is presented in a
planned intervention. Nurses are called to be at the
leading edge of innovation, always challenging the
status quo and taking responsibility for creating
new solutions (Prime Minister’s Commission on
the Future of Nursing and Midwifery in England
2010). Non-adherence harm reduction is itself
a new and innovate approach which aims both to
acknowledge the patient’s ability to choose and
learn from experience, and to increase their success
when withdrawing from prescribed medication.
The intervention evaluation method is outlined.
The patient and clinical context
(The patient’s real name and service area details
have been omitted and confidentiality maintained).
Michael is an 18-year-old Black British who lives
in inner city London with his parents. He enjoys
spending time with friends and playing computer
games. He wants a job and to be more independent
from his parents.
At the beginning of 2010, Michael raised
concern in his family when stating that he was
destined to be with a famous pop singer, could see
UFOs and could classify car colour by gender. He
was admitted to an acute psychiatric unit for a
period of assessment and was discharged with a
prescription of aripiprazole 10 mg twice per day
which he discontinued upon discharge without
reoccurrence of psychosis.
Later in the year came reports from his family
that Michael had injured his foot through jumping
off a roof, and that he had made attempts to remove
his right big toe nail. His parents expressed concerns that his behaviour was affecting the whole
family and Michael was readmitted under section 3
of the Mental Health Act (1983) with a diagnosis of
schizophrenia.
During the time of his current second admission
to hospital he has not presented with or exhibited
any symptoms of a psychotic illness. Michael
acknowledges he was ‘confused’ at times but states
that he does not need to be in hospital for that. He
feels he needs help to find a job and support to live
independently and then he will have no problems.
While on the unit Michael has adhered to a
high dose of antipsychotic medication (olanzapine
10 mg twice per day) despite conveying that he
does not feel he needs to be on medication and
clearly stating that he will not take medication once
discharged.
Presenting problem
Non-adherence to prescribed antipsychotic
medication following hospital discharge
Adherence has been defined as the extent to which
a person’s behaviour coincides with the medical
advice given (Sackett & Haynes 1976). In their systematic review and meta-analysis of clinical interventions for treatment non-adherence in psychosis,
Nose et al. (2003) reviewed 24 studies published
since 1980. They acknowledge the difficulty of
making a clear distinction between adherence to
medication and adherence to scheduled appointments, and these two categories, were in many cases
ambiguous and somewhat artificial. Nose et al.
(2003) argue for the concept of non-adherence to be
unified and considered as one patient-related variable which can be measured and defined in many
different ways. Within this paper, non-adherence
refers specifically to antipsychotic medication unless
otherwise stated.
At least half of people given antipsychotic drugs
do not adhere to the treatment regimen prescribed
(McEvoy 2004, McIntosh et al. 2006), and this nonadherence is a serious concern. Risk of suicide may
be more than three times higher in people who are
non-adherent (defined as failure to take medication
as prescribed or to attend follow-up) (Hawton et al.
2005). Non-adherence to antipsychotic medication
has been associated with psychotic relapses, admissions to hospital and poorer outcome (Gabel &
Piezcker 1985, Helgason 1990, Fenton et al. 1997,
McIntosh et al. 2006, Ucok et al. 2006, Morken
et al. 2008).
Assessing attitudes towards
anti-psychotic medication
Increasing a patient’s knowledge about medication and dealing with side effects do not directly
address a person’s non-adherence to antipsychotic
medication.
Soskis (1978) found that although people diagnosed with schizophrenia were considerably more
M. A. Aldridge
2 © 2011 Blackwell Publishingknowledgeable than medical inpatients about the
medication they were receiving only 56% of those
diagnosed with schizophrenia said that they would
take the medication if they had the choice as compared with 93% of the medical inpatients.
Tacchi & Scott (2005) argue that side effects are
unlikely to be the key factor in explaining why an
individual is non-adherent, and side effects may even
be more frequent among those who are adherent
than those are not (Irwin et al. 1971).
Rather than a person’s level of knowledge about
medication or side effects experienced, a person’s
attitude towards antipsychotics may have most
significance in terms of non-adherence. The Drugs
Attitude Inventory (DAI-30; Hogan et al. 1983) was
developed to assess how subjective attitude towards
anti-psychotic medication may affect adherence to
treatment. The scale has good reliability and validity
(Hogan et al. 1983). Using this assessment tool with
Michael, he scored -4, predicting non-adherence.
Michael’s own answers on the DAI-30 (Hogan et al.
1983) reflected that indeed, rather than being concerned about side effects or treatment efficacy, he
simply sees no need for treatment.
Approximately one-third to one-half of patients
diagnosed with schizophrenia deny they are ill
or need treatment (McEvoy 2004). Staring et al.
(2010) consider denying or sealing over illness and
not integrating illness and treatment into life, as
important determinants of non-adherent behaviour.
Such non-recognition of the need for treatment is
often considered a dimension of ‘poor insight’ in
psychosis (Cuesta et al. 2000, Amador & David
2005) and such ‘lack of insight’ has been identified
as the main cause of non-adherence in patients
with schizophrenia (Fenton et al. 1997, Lacro et al.
2002).
Interventions:
1. adherence improvement
Adherence therapy
Cognitive behavioural therapy, practical problem
solving and motivational approaches might be
effective in targeting non-adherence (Lecompte &
Pelc 1996, Zygmunt et al. 2002) but psychoeducation, while increasing patients’ understanding of
their illness and treatment, does not improve adherence (Merinder 2000, Gray et al. 2002, Zygmunt
et al. 2002, Lincoln et al. 2007).
Staring et al. (2010) recently developed a treatment adherence therapy approach which can be
tailored to the reasons for an individual’s nonadherence; however, overall there is no clear evidence to suggest that adherence therapy as a specific
intervention is beneficial for people with psychosis (Zygmunt et al. 2002, McIntosh et al. 2006,
Puschner et al. 2009) and the National Institute
for Health and Clinical Excellence (NICE) (2010)
recommends that adherence therapy as a distinct
intervention should not be offered to people with
psychosis. Further discernment as to whether certain components of adherence therapy may be effective if integrated into other interventions may be
useful.
Antipsychotic long-acting injections
Long-acting injections (LAIs) have been identified
as a means of improving adherence (Schooler 2003,
McEvoy 2004, Miller 2008, Rainer 2008, Buckley
et al. 2009, Hosalli & Davis 2009) and they
may help to prevent relapse (Fenton et al. 1997,
McIntosh et al. 2006, Morken et al. 2008).
Risperidone, an atypical antipsychotic first marketed internationally as an oral preparation (Chue
2011), was the first atypical to be produced in LAL
form (Hosalli & Davis 2009). The impact of risperidone LAL (RLAI) in clinical practice has led to
increasing consideration of LAIs in first-episode psychosis (Chue & Emsley 2007, Emsley et al. 2011).
Risperidone is well marketed and appears to have
marginal benefit in terms of clinical improvement
compared with placebo in the first few weeks of
treatment, but data are limited, poorly reported and
probably biased in favour of risperidone (Rattehalli
et al. 2010). While more acceptable than placebo
injection, it remains unclear if RLAI actually has any
more value in improving symptoms of schizophrenia
than placebo (Hosalli & Davis 2009).
While RLAI may lead to cost savings and greater
clinical benefits when compared with oral antipsychotic medication (NICE 2010), there is currently
only limited evidence from two randomized controlled trials (RCTs) regarding the efficacy and safety
of RLAI compared with placebo or oral antipsychotic medication (risperidone) (NICE 2010).
Recently approved pharmacotherapeutic developments include the introduction of paliperidone
LAI and olanzapine LAI (OLAI) (Lauriello & Beck
2011). These have the advantage of up to once a
month injection intervals compared with twice
Non-adherence harm reduction
© 2011 Blackwell Publishing 3monthly RLAI. The most effective way of predicting
response to RLAI is to establish dose and response
with oral risperidone (Taylor et al. 2009). This may
suggest that OLAI could potentially be suitable for
Michael, who appears to have had a good response
to oral olanzapine (he has not exhibited any medication side effects or symptoms of a psychotic
illness while on the unit); however, OLAI is not yet
marketed within England.
During Michael’s current admission to hospital
he has not presented with or exhibited any symptoms of a psychotic illness, on this basis it may be
that an LAI could eliminate the need for regular oral
doses (Hosalli & Davis 2009) and it is feasible that
an LAI may be more convenient and preferable for
him than taking tablets (Tacchi et al. 2011). The
practical application of choice and personal recovery
models has led to the recognition that patients
deserve the option of using LAIs (Pereira & Pinto
1997, Tacchi et al. 2011) but a large proportion of
clinicians do not even consider discussing these as an
option with patients (Waddell & Taylor 2009).
Schooler (2003), points out that relapse occurs
even when medication is guaranteed via injection.
Lack of adherence with medication is not the only
source of relapse (Schooler 2003) and in an RCT,
Morken et al. (2008) found that half of patients
who remained adherent to an antipsychotic LAI for
2 years relapsed during this period.
The widespread perception that LAIs are more
coercive than oral antipsychotics (Patel et al. 2010)
should not be underestimated (Waddell & Taylor
2009). Ethical concerns regarding coercion associated with LAIs persist among psychiatrists and
nurses alike (Patel et al. 2003, 2005, 2008b) and
when all different types of psychiatric medication
are compared, patients suggest LAIs are least preferred (Castle et al. 2002, Bradstreet & Norris
2004). Patel et al. (2009) found that just under half
of participants in their study, who had current or
previous experience of LAIs, felt they were forced to
start receiving them.
Even though the option of LAIs can be discussed
with Michael, patients on maintenance antipsychotics have been shown to respond similarly when
questioned about their attitudes to antipsychotic
medication whether they are on LAI or oral formulations (Patel et al. 2008a, 2009). Adherence with
LAIs during hospital admission would not necessarily change Michael’s attitude to antipsychotic medication or prevent him from declining antipsychotic
treatment following discharge (Glazer & Kane
1992, Barnes & Curson 1994); however, despite
concerns over increasing coercion and force in the
mental health system for the first time in England
and Wales there are now explicit powers to
mandate adherence with treatment in those outside
hospital (Molodynski et al. 2010).
Supervised community treatment
Supervised community treatment was introduced in
2008, following substantial amendments to the
1983 Mental Health Act. Under this regime, an
individual can be made subject to a community
treatment order (CTO; Molodynski et al. 2010).
The most common CTO conditions so far include
a requirement to accept medication (Molodynski
et al. 2010) and Dawson (2005) has identified a
strong CTO focus on antipsychotic LAIs.
For Michael to breach CTO conditions through
non-adherence to a prescribed LAI could be used as
grounds for his recall to hospital even in the absence
of signs of relapse (Molodynski et al. 2010). Such
legal powers could potentially help to insure Michael’s continual acceptance of LAIs following hospital
discharge.
The CTO conditions can be used to legally
enforce adherence to an LAI in the community;
however, excessive restrictions may breach human
rights legislation (Bindman et al. 2003) and the evidence does not support the perceived benefits to such
enforcement (Burns & Dawson 2009, Kisely et al.
2010). A Cochrane review (Kisely et al. 2010) of the
two existing RCTs of CTOs found that it would take
85 outpatient commitment orders to prevent one
readmission to hospital, 27 to prevent one episode of
homelessness and 238 to prevent one arrest.
Paul Jenkins, chief executive of a leading UK
mental health charity Rethink, has commented that
involving patients in decisions about their care and
treatment is crucial to their progress, but he argues
that health professionals are sometimes opting for
the easier option and imposing CTOs too readily
instead of prioritizing patients’ best interests. He
argues that imposing such restrictions causes distress, hampers recovery and that it could be breaching human rights (Rethink 2010).
Using a CTO to insure Michael’s continual
acceptance of antipsychotic medication following
hospital discharge might be seen as an easier option,
but could impose undue restriction on Michael
and undermine efforts towards a collaborative
approach.
M. A. Aldridge
4 © 2011 Blackwell PublishingInterventions:
2. non-adherence harm reduction
Patient choice
Recovery involves regaining active control over
one’s life. This includes accessing useful information, developing confidence in negotiating choices
and taking increasing personal responsibility (Care
Services Improvement Partnership et al. 2007).
The NICE (2002, 2009) guidelines have specifi-
cally recommended collaborative informed decision
making in antipsychotic prescribing, but Olofinjana
& Taylor (2005) have shown that this guideline is
not always followed in practice. Despite rhetoric of
patient choice, Michael’s real preference – not
taking medication at all, appears to make staff on
the unit apprehensive. Gray et al. (2002) suggest
that patients have the right to make the decision to
stop medication even if clinicians do not agree, but
although nurses play a key role in enabling people
to make personal choices (Prime Minister’s Commission on the Future of Nursing and Midwifery in
England 2010), for nurses to simply accept this
choice could be seen to conflict with the primary
obligation to help (Munetz et al. 2003).
Although Michael acknowledges that he has been
confused at times, he continues to deny having a
mental illness or any genuine need for treatment. So
it might be considered that Michael’s decisionmaking capacity is impaired by his lack of insight;
however, Hamilton & Roper (2006) argue that the
biomedical understanding of insight disqualifies and
demoralizes persons subjected to assessment and
creates punitive scrutineers out of well-intentioned
practitioners. They encourage nurses to reconsider
their reliance on the concept of insight (Hamilton &
Roper 2006).
People who choose to accept that they have mental illness may feel driven to conform to an image of
incapacity and worthlessness, becoming more socially withdrawn and adopting a disabled role (Warner
2004, 2010). Read et al. (2006) conclude that an
evidence-based approach to reducing discrimination
would seek a range of alternatives to the ‘mental illness is an illness like any other’ approach. Better
treatment adherence is not necessarily associated
with having a biological explanatory model (McCabe & Priebe 2004) and Staring et al. (2010) have
recognized that improved adherence, if obtained by
enhanced insight, may carry the risk of deteriorating
quality of life and increasing depression.
Embracing Michael’s own explanation (that he
was ‘confused’ at times) opens the possibility of
looking at his personal views regarding treatment in
terms other than ‘lack of insight’ (Cuesta et al.
2000, Amador & David 2005). Whether this could
be used to stimulate Michael into developing an
individual narrative in which treatment can be integrated (as suggested by Staring et al. 2010), is
perhaps doubtful, but it may improve clinician
understanding into Michael’s denial of mental
illness or need for treatment.
Even if Michael’s own non-medical explanation
of his experiences were understood and recognized
as helpful to him, mental health law based on risk
‘trumps’ mental health law based on capacity and
individual autonomy (Owen et al. 2009, p. 257) and
this may reinforce nursing perceptions of incompetency and dangerousness (Szmukler & Holloway
1998).
Thomas et al. (1997) conducted an exploratory
study assessing staff perceptions and reactions to
the reduction of maintenance antipsychotic medication in patients living in a long-stay hospital.
Despite the gradual reduction in the dose of medication in the study, no deterioration in the patients’
psychopathology was found over a 6-month period;
however, staff were apprehensive about the gradual
reduction and their perceptions of patients’ behaviour were not related to patients’ psychopathology
as measured by the Brief Psychiatric Rating Scale
(BPRS; Overall & Gorham 1962). Staff expressed
reservations about further reductions despite evidence of no deterioration in the patients’ mental
state (Thomas et al. 1997). Behaviour such as ‘the
patient not getting up on time’ or ‘refusing to attend
activities’ were interpreted as possible relapses
(Thomas et al. 1997).
Just as staff perceptions based on apprehension
may not always be rational, it is also wrong to
assume that patients’ adherence to prescribed antipsychotics is always rational (Kinderman & Cooke
2000). Many people have successfully discontinued
psychiatric medication against the advice of mental
health professionals (Crepaz-Keay 1999). The odds
of having stopped or refused treatment for a psychotic condition have been shown to be greater for
those with the highest level of educational qualifications (Foster et al. 1996) and Horne & Weinman
(1995) introduced the idea of intelligent nonadherence. Patients concerns about medication may
simply exceed their beliefs about the necessity of the
medication (Clatworthy et al. 2009).
Non-adherence harm reduction
© 2011 Blackwell Publishing 5Psychiatric patients are no different from other
patient groups in their desire for autonomy (Hill &
Laugharne 2006) and rates of non-adherence with
medication in persistent mental disorders average
about 30% – the same rate as reported for chronic
physical disorders (Tacchi & Scott 2005). Lack of
treatment-related decisional capacity is by no means
an inevitable correlate of admission to a psychiatric
inpatient unit (Cairns et al. 2005, Jeste et al. 2006).
Patients detained under the Mental Health Act
(1983) frequently have the mental capacity to make
decisions regarding prescribed medication (Owen
et al. 2009).
Moncrieff (2008) argues that unless someone’s
behaviour is seriously antisocial or criminal, they
should be entitled to decide for themselves whether
psychiatric drugs or the mental disorder are more
tolerable.
The British Psychological Society (2000) has
estimated that around 10–15% of the general population experience what could be described as psychotic phenomena, and most are neither distressed,
nor seek help. Michael stated that he is destined
to be with a famous pop singer, could see UFOs
and could classify car colour by gender. In fact,
studies have shown that all sorts of beliefs Western
psychiatry might see as delusions (including beliefs
in magic, aliens, telepathy and spiritualist beliefs) are
actually extremely common in the general population (Peters et al. 1999). Michael may decide that the
distress related to what he describes as being ‘confused at times’ is less than taking medication that he
feels he does not need.
There is no evidence of harm resulting from
shared decision-making interventions (Duncan
et al. 2010) and Hope (2002) expresses the view
that genuine respect for patient choice is good in
itself, even if it were to lead to poorer health.
Harm reduction
The concept of harm reduction is familiar in substance abuse and service provision for drug users. It
is new in mental health and was introduced in this
context by US-based peer-run mental health groups
(Freedom Center and The Icarus Project) in
their publication of the Harm Reduction Guide
to Coming Off Psychiatric Drugs (Hall 2007).
According to this guide, a harm-reduction approach
means not being pro- or anti-medication, but supporting people to make their own decisions balancing the risks and benefits involved: ‘It means
recognizing that people are already taking psychiatric drugs and already trying to come off them. It
encourages examining all the different kinds of risks
involved: the harm from emotional crisis that goes
along with experiences labelled mental disorders, as
well as the harm from treatments to deal with these
experiences such as psychiatric drugs, diagnostic
labels and hospitalization . . .’ (Hall 2007, p. 6).
The UK Harm Reduction Alliance 2011), which
focuses on substance abuse and service provision
for drug users, has set out the principles of
harm reduction adapted from those set out by
Lenton & Single (1998). The UK Harm Reduction
Alliance principles have been adapted here as principles for a harm-reduction approach to addressing
non-adherence to antipsychotic medication. Nonadherence harm reduction:
• Is pragmatic: and accepts that non-adherence
is common and enduring. It acknowledges
that, while carrying risks, non-adherence
provides the patient with benefits that must
be taken into account if responses to nonadherence are to be effective. Harm reduction
recognizes that for many, reduction of nonadherence related harms is a more feasible
option than efforts to eliminate non-adherence
entirely.
• Prioritizes goals: harm reduction responses to
non-adherence incorporate the notion of a
hierarchy of goals, with the immediate focus
on proactively engaging individuals through
the provision of accessible and user-friendly
services. Achieving the most immediate realistic goals is viewed as an essential first step
towards risk-free non-adherence, or, if appropriate, adherence.
• Has humanist values: the patient’s decision to
not take antipsychotic medication is accepted
as fact. No moral judgment is made either to
condemn or to support non-adherence. The
dignity and rights of the patient are respected,
and services endeavour to be ‘user friendly’
in the way they operate. Harm-reduction
approaches also recognize that, for many, nonadherence may be a long-term feature of their
lives and that responses to non-adherence have
to accept this.
• Focuses on risks and harms: on the basis that
by providing responses that reduce risk, harm
can be reduced or avoided. The focus of
risk reduction interventions being the nonadherence of the patient.
M. A. Aldridge
6 © 2011 Blackwell Publishing• Does not focus on adherence: although harm
reduction supports those who seek to use
antipsychotic medication, it neither excludes
nor presumes a treatment goal of adherence.
• Seeks to maximize the range of intervention options that are available, and engages
in a process of identifying, measuring and
assessing the relative importance of nonadherence related harms and balancing costs
and benefits in trying to reduce them.
Some potential risks of non-adherence include its
association with psychotic relapses, admissions to
hospital and poorer outcomes (Gabel & Piezcker
1985, Helgason 1990, Fenton et al. 1997, Hawton
et al. 2005, McIntosh et al. 2006, Ucok et al. 2006,
Morken et al. 2008). Within days of stopping an
oral antipsychotic (Dilsaver & Alessi 1988) withdrawal symptoms can include insomnia, nausea,
anxiety and motor phenomenon including temporary exacerbation of tardive dyskinesia (Haddad &
Fleischhacker 2011). In the longer term, it is suggested that duration of untreated psychosis (DUP)
may be toxic and related to worse prognosis (Marshall et al. 2005, Barnes et al. 2008).
MIND’s research into the experiences of people
trying to come off psychiatric drugs (Read 2005)
involved qualitative and quantitative data through
the use of questionnaires and interviews with 204
people who had attempted to discontinue their
medication. Over half of the sample had difficulties
in coming off and many withdrawal reactions mirrored psychiatric symptoms/disorders. In all, 30%
withdrew from their drugs immediately, 14% in less
than 1 month, 32% over a period of 1 to 6 months
and 21% withdrew over a period of more than 6
months. Some individuals who came off more
slowly, wanted to obtain their drug in its lowest
dose or a liquid form so they could come off gradually; however, this option was unavailable to those
stopping medication without the support of mental
health professionals. It was not uncommon for professionals not only to be unsupportive, but to
actively oppose patient choice to stop medication.
The optimal duration of maintenance antipsychotic treatment in patients who are in remission
from first episode psychosis is not known (Miller
2008) and there is no simple formula for deciding
when to reduce such antipsychotic treatment
(Taylor et al. 2009). It is considered impossible to
predict which patients prescribed maintenance
antipsychotics could do without them (Wunderink
et al. 2007) and there is no evidence that doctors
can predict this (Read 2005). For this reason, the
American Psychiatric Association (APA) (2004) has
suggested that maintenance antipsychotics should
be used indefinitely: ‘Unfortunately there is no reliable indicator to differentiate the minority who will
not from the majority who will relapse with drug
discontinuation. Indefinite maintenance antipsychotic medication is recommended for patients who
have had multiple prior episodes or two episodes
within five years’ (APA 2004, p. 114).
The APA (2004) recommendations aside, longitudinal data suggests that not all schizophrenia
patients need to use antipsychotic medications continuously throughout their lives (Harrow & Jobe
2007) and Warner (2004) suggests antipsychotic
drug treatment may have negative long-term effects
on people with a good prognosis. Whitaker (2004)
argues that every patient stabilized on antipsychotics should be given an opportunity to gradually
withdraw from them, but there have been virtually
no designated specialist services to help people discontinue prescription drugs (Holmes & Hudson
2003) and psychiatrists and general practitioners
have been identified as the least helpful group of
people in terms of assisting patients to withdraw
from psychiatric drugs (Read 2005).
It has been argued that duration of untreated
psychosis may in fact have no direct toxic neural
effects (Ho et al. 2003) and Moncrieff (2008) suggests that where people who have a longer evolution
of symptoms before coming to psychiatric attention
have poorer long-term outcomes, this may be due to
speed of onset (as an indication of inherent severity)
rather than a correlate of non-treatment with antipsychotics. Bola (2006) concludes that evidence
is inadequate to support the notion of long-term
harm resulting from short-term postponement of
antipsychotics.
Rebound of psychotic symptoms in withdrawal
may be to a higher level than would have been the
case without treatment (Warner 2004) and Moncrieff (2006) considers that such psychosis may be a
feature of antipsychotic withdrawal itself rather
than a re-emergence of underlying illness.
Hall (2007) expresses the view that taking psychiatric drugs can mean being seen as mentally ill in
society and starting to see oneself in that role. Status
as a chronic patient might be created in part by wellintentioned interventions that communicate stigma
and low expectations (Williams & Collin 2002).
Michael discontinued his prescribed aripiprazole
(10 mg twice per day) in April 2010 without reocNon-adherence harm reduction
© 2011 Blackwell Publishing 7currence of psychosis at the time. He is currently
prescribed a higher dose of antipsychotics (olanzapine 20 mg per day [maximum dose for adults, British
Medical Association (BMA) 2010] and has clearly
stated that he will not take his medication once
discharged. While discontinuation of maintenance
antipsychotics may have potential risks, people who
discontinue psychiatric medication against medical
advice may be just as likely to succeed as those whose
doctors agree with withdrawal (Read 2005) and the
gain could be either successful discontinuation or
personal empirical evidence on the usefulness of
medication (Wunderink et al. 2007).
Rather than embracing the risk-averse stance
of the APA (2004) and remaining limited to adherence improvement approaches, a harm-reduction
approach to non-adherence could be more collaborative in working with Michael: ‘. . . Making harm
reduction decisions means looking at all sides of the
equation . . . Any decisions may involve a process of
experimentation and learning, including learning
from your own mistakes. Harm reduction accepts all
this, believing that the essence of any healthy life is
the capacity to be empowered’ (Hall 2007, p. 6).
Early relapse risk is lower when gradually,
rather than abruptly discontinuing antipsychotics
(Viguera et al. 1997) and although there are currently no consensus guidelines for how antipsychotics can be optimally discontinued in patients
(Miller 2008), the British National Formulary
(BMA 2010) provides helpful information: ‘Withdrawal of antipsychotic drugs after long-term
therapy should always be gradual and closely
monitored to avoid the risk of acute withdrawal
syndromes or rapid relapse. Patients should be
monitored for 2 years after withdrawal of antipsychotic medication for signs and symptoms of
relapse’ (BMA 2010, p. 185). During this second
admission Michael has adhered to a high dose of
antipsychotic medication (olanzapine 10 mg twice
per day) but has clearly stated that he will not take
medication once discharged. If not taken seriously,
there may be a risk that once discharged from hospital Michael will withdraw from medication
abruptly without monitoring or adequate support.
It may therefore be appropriate in this instance to
support Michael with a gradual withdrawal prior
to discharge, thus minimizing associated risks
and reducing potential rehospitalization related to
rapid withdrawal.
Wunderink et al. (2007) conducted an RCT
including 128 patients with first episode psychosis
who were prospectively followed for 18 months
after 6 months of stable remission. Participants were
assigned to either continued antipsychotic maintenance treatment or an antipsychotic discontinuation strategy. Of those within the discontinuation
strategy group, one in five successfully discontinued
antipsychotics for a median period of 15 months
(Wunderink et al. 2007).
In further investigating the consequences of this
(Wunderink et al. 2007) trial, Stant et al. (2007)
found that there were no differences between
patients assigned to the discontinuation strategy and
those in the maintenance treatment group in either
the mean cost of treatment or in measurement of
quality-adjusted life years. Although additional results indicated that the relapse rate in discontinuation strategy was twice as high, there was no increase
in hospital admissions or negative consequences on
other clinical outcomes (Stant et al. 2007).
In working collaboratively with Michael, the
nurse is not in a position to simply force him into
conformity with the medical model. A key nursing
role is in enabling people to make personal choices
(Prime Minister’s Commission on the Future of
Nursing and Midwifery in England 2010). The
Nursing and Midwifery Council (NMC 2008)
asserts that nurses must uphold people’s rights to be
fully involved in decisions about their care, and
nurses must act as advocates for those individuals,
helping them to access relevant health and social
care, information and support.
With Michael this could mean to recognize and
support his capacity to be empowered and to
pursue his own choices in such a way as to reduce
harm.
Intervention – non-adherence harm reduction
A non-adherence harm-reduction approach will
acknowledge Michael’s ability to choose and learn
from experience and will aim to reduce any potential harm related to this. To increase withdrawal
success, Falloon (2006) advocates combining antipsychotic dose reduction with training in psychosocial stress management. Holmes & Hudson (2003)
offer ‘top tips’ for coming off psychiatric medication, and MIND’s report Coping with Coming Off
(Read 2005) makes specific recommendations.
Based on these, the British National Formulary
guidelines (BMA 2010) and ongoing risk assessment, the planned non-adherence harm-reduction
intervention is outlined below:
M. A. Aldridge
8 © 2011 Blackwell Publishing• Sharing information and resources on coming
off psychiatric drugs;
• Encouraging a gradual, rather than sudden
antipsychotic discontinuation;
• Supporting and monitoring Michael during
the withdrawal process and thereafter;
• Offering evidence-based psychosocial stress
management interventions.
Review and evaluation
Review and evaluation of this non-adherence
harm-reduction strategy will include on-going risk
assessment, monitoring any possible relapse and
hospitalization, use of the DAI-30 (Hogan et al.
1983) to record any changes in Michael’s attitude
towards drugs, and using the BPRS (Overall &
Gorham 1962) to objectively assess psychiatric
symptoms at various stages of the discontinuation
process.
Conclusion
Michael has decided that he will discontinue his
antipsychotic medication following discharge and
this raises concerns about the prospect of relapse
and longer-term outcomes. The potential use of
adherence therapy and LAIs has been discussed,
and although other possible adherence improvement strategies also exist (Nose et al. 2003, Miller
2008), this essay questions the underlying philosophy of all such adherence improvement approaches.
Where an adherence improvement approach
might see increased adherence as the essential objective, such approaches could disable genuine collaboration. Instead, the planned non-adherence harmreduction approach aims to reduce potential harm
related to Michael’s own decisions regarding prescribed medication. Sharing information and
resources on coming off psychiatric drugs, close
support, monitoring [including risk assessment and
use of the BPRS (Overall & Gorham 1962)] and use
of psychosocial interventions for coping with stress
(Falloon 2006) could help to reduce both possible
harm resulting from withdrawal (Wunderink et al.
2007) and staff apprehension in relation to this
(Thomas et al. 1997). The best medical knowledge
and advice is a bed rock of both nursing and patient
care generally, and supporting Michael in not following the best medical advice may appear inappropriate from a purely medical perspective; such
support may, however, reduce harm and empower
Michael in his own choices. A harm-reduction
approach to non-adherence is thus clearly in accord
with nursing as seen in both the NMC (2008) Code
and the Prime Minister’s Commission on the Future
of Nursing and Midwifery in England (2010).
Acknowledgments
Thanks to Fiona Couper, Jaquline Sin, Geoff
Brennan and all those who have supported this
work.
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