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Opinion and debate |
Lifespan Healthcare NHS Trust, Phoenix Centre, Ida Darwin, Fulbourn, Cambridge CB1 5EE
In our experience, achieving consent, or managing situations when this is not possible, are fundamental issues in the treatment of patients with eating disorders. This is most clearly illustrated with reference to anorexia nervosa. An obvious reason for this is that in its severe form anorexia nervosa is life threatening — there is much to lose. A second reason is that the ambivalence over treatment that is found in other chronic illness, for example, renal failure (Korsch et al, 1978), is complicated in anorexia nervosa by the fact that the treatment and the illness tend to pull the patient in opposite directions, that is, weight restoration versus weight loss.
In this paper we will focus on anorexia nervosa. We will set a general context for consideration of consent. We will describe our approach to maximising the likelihood of consent and to dealing with situations when consent is not achievable.
Consent
For psychiatrists, achieving clarity regarding the patient's giving or withholding of consent has three functions.
Maximising consent depends on (a) giving information; and (b) working with motivation.
Giving information
We hope that by giving information we can position ourselves alongside patients and families as part of a team working out how to deal with anorexia and the problems it creates. We describe ourselves as experts on anorexia nervosa. We have a professional responsibility to be up-to-date on the literature. We have an extensive experience of talking with people suffering from this illness. We have observed what tends to happen when patients do X or Y or when we do P or Q. We share this information with patients and their families. We also provide a range of literature for them to read and suggest sources of further information. In this way we hope that we can help patients and families make decisions that move them closer to recovery.
How do we know what information to give at any particular time? Just as giving too little information is unhelpful in that it reduces our patients' ability to make informed choices, giving too much information may also be unhelpful. In our experience patients may either be overwhelmed by the anxiety of excessive information or may fail to see its relevance to them.
Our solution is to focus mainly on information that will help patients understand their situation and orientate themselves to the future. For most, if not all, patients this will include information regarding the natural history of the illness (Strober et al, 1997) and factors that may lead to a better outcome. We also attempt to match information to motivational stages (see below).
Working with motivation
The giving of consent should not be seen as a single event, established once only and interpreted as an agreement to all the treatments offered. Rather, it should be perceived as an ongoing process in which the patient's level of motivation for change is likely to play a crucial part.
As explained above, anorexia nervosa is a condition characterised by ambivalence to treatment and to change. The balance of motivation, to recover or to remain ill, fluctuates. For instance, patients may become more keen on the idea of recovery if they believe they are about to die of malnutrition or once the benefits of recovery are apparent. On the other hand, motivation for recovery is likely to decrease when patients experience a bloated abdomen or hear comments regarding how much weight they have gained.
Miller & Rollnick's (1991) approach to enhancing motivation in those with addictive behaviour and subsequent adaptations of this work to the field of eating disorders (Schmidt & Treasure, 1997) have been very helpful to us. We now try to work in a way that enhances the motivation for recovery of our patients. We believe that this makes it more likely that the patient will consent to treatment, or to put it more usefully; that we and the patient will work together in dealing with the anorexia nervosa problem.
There are several key aspects to this approach.
Establishment of a relationship
It is important to establish a relationship in which our role is to promote
and support change, but this change is achieved in part through us helping the
patient to come to the realisation of the advantages of recovery over
remaining ill.
Working with the motivational state of the patient
Patients may be described in a general sense as in one or other of a number
of motivational states. For example, ‘precontemplation’ refers to
the state of not accepting either that there is an illness or that treatment
might be a good idea; ‘contemplation’ is a state where these
things are being thought about; and ‘action’ as a state of
actually doing something about the problem. However, such a categorisation may
be rather simplistic. We find it tends to be more useful to think in terms of
motivational state for individual difficulties such as vomiting or exercise
and to obtain something closer to a motivational profile that then informs
treatment as below.
Matching intervention with motivational stage
Patients who do not accept that they have anorexia nervosa or that they are
in need of help, are unlikely to consent to treatment such as weight
restoration. If there is an urgent need for weight restoration then this will
need to be achieved without patient consent (see below). If there is not such
an urgent need then it may be more helpful to focus on helping patients to an
under-standing that they are unwell. Only then will they be able to move on to
considering the costs and benefits of change.
Involving families
We do this in a similar way to how we work with patients; sharing knowledge
about the disorder, and about what does and does not help, clarifying where
responsibility for change lies and linking this explicitly to a motivational
framework. This also requires an under-standing of the family's motivational
state, and how this can be discrepant from the patient's. Addressing this
discrepancy can help to lower high expressed emotion, which we know is
associated with an increased risk of drop out from treatment
(Le Grange et al,
1992). We also encourage families to recognise and share their
expert knowledge of this illness so that they can gradually move from a
position of victim to one where they have a sense of their own influence on
the course of events. Mechanisms for this include a Parent's Support Group,
and the involvement of patients and their parents in teaching events.
Supporting ideas generated by patients or their families when
possible
An example of this is where we recommend admission of a patient suffering
from anorexia nervosa. It is not uncommon for patients to say that they are
prepared to gain weight but that they will do this at home. Often on the basis
of the past history, we do not share their confidence. However, we have learnt
that unless patients are in a dangerous physical state we tend to do better to
support their plan. This has two advantages. The first is that sometimes
patients are right and we are wrong and they do succeed. The second is that
once they have had a chance to try their plan, if it does not succeed, they
are often more open to considering alternatives. This may lead to their
consenting to our original suggestion.
When consent is not achievable
Such situations fall broadly into two main categories.
When a patient of whatever age, who has the ability to understand
their choices regarding the illness and treatment offered, refuses
consent
In these circumstances our approach tends to be as follows:
When a child under 18 is unable to understand the nature of the
treatment and the consequences of refusing it
In these circumstances treatment can proceed on the basis of parental
consent (eg. permission to admit to an in-patient unit). This is a right held
by parents under common law. However, we would again recommend that an
on-going attempt to enhance the patient's level of competence and motivation
for treatment should be adopted. Where a particularly high level of treatment
intervention is required (eg. naso-gastric feeding plus sedation or physical
restraint), legal advice should be sought as to whether proceedings under the
Children Act would be appropriate. This has the dual effect of ensuring that
the patient's views are formally considered, and that the clinician is
protected from accusations of assault or trespass.
Mental Health Act or Children Act?
The decision as to whether to use the Mental Health Act or the Children Act with patients under 18 who understand the issues but refuse consent, is a complex one. Practice varies between clinicians and familiarity with both legal frameworks is necessary. Advantages of using the Mental Health Act include that the patient is then provided with the safeguards afforded by the Act. Advantages of using Children Act proceedings include that this avoids the stigma of the Mental Health Act. Patients who have been detained and treated under the terms of the Mental Health Act will be unable to travel visa free to some countries, such as the USA, and will be required to provide supporting medical evidence regarding current mental health status before a visa is provided. There may also be implications for emigration applications. It may make more sense to use proceedings under the Children Act in younger children and to use the Mental Health Act with older teenagers. For a more detailed discussion of the ethical and legal dilemmas connected to this issue see Honig & Bentovim (1996) and Freeman (1992).
Discussion
We recommend an approach that focuses on collaboration with patient and family, on giving information, on motivational enhancement and on clarity regarding issues of consent. In our view such an approach maximises opportunities for successful treatment and provides safeguards for patients and staff alike.
References
DEPARTMENT OF HEALTH (1999) Reform of the Mental Health Act, 1983: Proposals for Consultation. London: The Stationery Office.
FREEMAN, M. (1992) Removing rights from adolescents. Adoption and Fostering, 17, 14-19.
HONIG, P. & BENTOVIM, M. (1996) Treating children with eating disorders — ethical and legal issues. Clinical Child Psychology and Psychiatry, 2, 287-294.
KORSCH, B., FINE, R. & NEGRETE, V. (1978)
Non-compliance in children with renal transplants.
Pediatrics, 61,
872-876.
LE GRANGE, D., EISLER, I., DARE, C., et al (1992) Family criticism and self-starvation: a study of expressed emotion. Journal of Family Therapy, 14, 177-192.[CrossRef]
MENTAL HEALTH ACT COMMISSION (1997) Guidance Note 3. Guidance on the treatment of Anorexia Nervosa under the Mental Health Act, 1983. Nottingham: Mental Health Act Commission.
MILLER, W. & ROLLNICK, S. (1991) Motivational Interviewing — Preparing People to Change Addictive Behaviour. New York: Guilford Press.
SCHMIDT, U. & TREASURE, J. (1997) Getting Better Bit(e) by Bit(e). Hove: Psychology Press.
STROBER, M., FREEMAN, R. & MORRELL, W. (1997) The long-term course of severe anorexia nervosa in adolescents: survival analysis of recovery, relapse and outcome predictors over 10-15 years in a prospective study. Eating Disorders, 22, 339-360.
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