134.Memorandum from Dr S Conboy-Hill (MIB
1164)
Our team has broadly welcomed the Draft Bill,
recognising that the current position is unacceptable, and acknowledges
the effort and expertise that has gone into its production. We
have also followed closely the proposals contained in the documents
"Who Decides?" and "Making Decisions", modifying
our practice accordingly. The following comments are made with
specific reference to adults with learning disabilities for whom
the Draft Bill seems to make only token provision, its focus appearing
to be largely on those who have had and then lost capacity or
whose functional capacity fluctuates.
SUMMARY OF
CONCERNS
1. Although learning disability is mentioned,
there seems to be an assumption of initial capacity or history
of capacity during which a person might make provision for incapacity
or from which speculations about wishes and preferences might
be derived by someone acting on their behalf.
2. This seems to be reinforced by the comment
that a Deputy of the Court of Protection would be appointed where
someone has not made, or has never been able to make, a Lasting
Power of Attorney (LPA). There is no specific reference to learning
disability, one of the few situations in which capacity may be
questionable and/or graded throughout life, and so it is unclear
how such a person might make an LPA or avoid being influenced
into making an unwise appointment through expedient assumption
of capacity (see below).
3. There is a requirement to assume capacity
in the first instance. This may lead to expedient actions achieved
through acquiescence, choice bias, lack of knowledge of alternatives
in the recipient, power imbalance, and lack of assertiveness in
the vulnerable adult.
4. Capacity has to be demonstrated at the
time required. This is based on the notion that the necessary
information does not have to be retained permanently but leads
to the possibility that people lacking skills and crucially, time,
to interview a client will be responsible for assessing capacity
for example just prior to planned surgery.
5. The Bill is written as though the person
has insight into the proceedings and complexities (see 1. above)
and can at times, take some form of action. While this may be
the case for some people, those with greater and lifelong impairments
are unlikely to be in this position. People with good social presentation
skills are particularly vulnerable to unfounded presumptions of
capacity and many can be falsely believed to have capacity through
unskilled interviewing.
6. Effective discharge of duty in the spirit
of the Bill hinges on communication. Where people have no history
of capacity through severe disability or whose capacity is graded
and allows for competence in selected areas, skilled information
giving and assessment of understanding are crucial. Bias, whether
motivated or unconscious, is almost inevitable where there are
vested interests and vulnerable adults need protection from the
misguided or wilfully controlling actions of those who seek to
represent them. Some user groups are particularly concerned about
the role of families, saying that "parents have too much
control already" and others want to draw the emphasis away
from capacity per se to better access to information and
to skilled advocacy.
7. The powers given by the General Authority
to act reasonably, the LPA and the role of Court Appointed Deputy
are potentially pervasive and carry serious consequences for the
person without capacity. There seems to be an underlying assumption
of goodwill and good intentions in those who seek to take these
responsibilities and while this is likely to be the case in many
situations, it will not be for some people. Similarly, good will
and good intentions are not guarantees of good practice or competence.
The Bill needs to make clear the lines of accountability that
accompany these roles, to ensure that multidisciplinary teams
have access to these lines in the event of dispute or concerns,
and to make provision for advocacy against the advocate"
where necessary.
8. People acting in the General Authority,
LPA and Deputy roles are essentially operating as advocates but
with considerable power over the individual without capacity.
Advocacy is essential where there is vulnerability but the role
itself requires an independence of thought, capacity for reflection
and self-analysis, objectivity and separation of needs that, in
therapists, can take many years of training to achieve. Experience
of adults with profound learning disabilities and their advocates
has included worrying representations of "wishes" where
we could not be certain any existed. Combining this role with
legal authorities would seem dangerous if not moderated by multidisciplinary
scrutiny.
WITH SPECIFIC
REFERENCE TO
PEOPLE WITH
LEARNING DISABILITIES
By definition, a person with a learning disability
is someone who, from childhood, has had significant limitations
of intellectual and social function such that at least 97.5% of
the population would exceed their capabilities in these areas.
Elsewhere described as having "arrested or incomplete development
of mind", Significant Learning Disability translates into
IQ 69 or below (see DoH guidelines) or a range that, at its highest
boundary, reaches IQ 73. Severe Learning Disability refers to
the capabilities of people with an IQ of 55 or less (see British
Psychological Society guidelines). Commonly people in the learning
disability range have no discernible cause for their intellectual
limitations. Possible explanations include normal distribution
(of IQ) and social and educational deprivation. Others have been
impaired by genetic disorders such as Down's Syndrome or by brain
trauma following infections, hypoxia, birth injury, or early head
injury. Autistic Spectrum Disorder is over-represented in the
learning disability range but is not necessarily associated with
cognitive limitations. As a disorder of social behaviour and communication,
there are implications for people with ASD whether this coexists
with learning disability or not.
The Draft Bill proposes that carers and professionals
working with people lacking capacity will be issued with guidelines
about how to function within the Act when it becomes law and,
critically, how to assess capacity. These guidelines have not
yet been issued and consultation will be sought in their construction.
We look forward to participating in this process.
PART 1 OF
THE DRAFT
BILL
This says that a person lacks capacity if, at
the time a decision has to be made, the person is unable to make
it due to a permanent or temporary disturbance in the functioning
of the brain.
A person will be seen as unable to make the
decision if:
— They cannot understand the information.
— They cannot retain the information.
— They cannot use the information as
part of the decisionmaking process.
— They cannot communicate their decision.
The Bill requires all practicable steps to be
taken to help the person make a decision and does not require
long-term retention of the information for that decision to be
valid. It also says that an "unwise" decision should
not be treated as evidence of incapacity.
This is clearly crucial to identification of
both capacity and incapacity and raises the following issues for
adults with learning disabilities.
— An unwise decision may be an indication
of poor understanding, lack of information or historical fears
of a proposed course of action while assumption of capacity may
result in both denial and imposition of services (through acquiescence
and choice bias). At present we err on the side of caution where
important decisions about health, finances, or living circumstances
are to be made. Individuals are given information over time in
appropriately constructed packages (discussion, booklets, drawings
etc) and then interviewed for evidence of retention and understanding
of this information. A variation of the Cognitive Interview is
used for this purpose since it capitalises on contextual free-recall,
non-leading questions and a structured component based on required
knowledge.
— If a person's capacity to retain
this information towards their decision is so short that it may
have been lost between the interview and the date of the proposed
action, it is difficult to see how capacity might be assessed
by the professional requiring evidence of it before proceeding.
At present a report is sent detailing the interview process and
its conclusions but video evidence of the interview in the manner
of Memorandum Of Good Practice (MOGP) Vulnerable Adult testimony
may also be useful.
The commentary on clauses of the Draft Bill
says that the ability to communicate a decision is a residual
category only affecting a small number of people such as those
with Locked in Syndrome. It seems to be assuming that someone
who is able to communicate a decision will also be willing to
do so and will make every effort to that end. In making this assumption,
the commentary fails to recognise the particular difficulties
of people with Autistic Spectrum Disorder, those who are electively
mute, and people who will only communicate under particular and
not easily replicable conditions. Failure to communicate a decision
may not then, reflect lack of knowledge or understanding but if
the decision cannot be accessed even with the assistance of people
who know the individual and have the right skills, it is difficult
to see how this category can be viewed as residual. Following
from this, a further difficulty arises when we are asked to accept
non-verbal expressions of consent or refusal of consent in place
of a verbal expression. We would argue that this is reasonable
where the information base upon which the person is making their
decision can be assessed but otherwise is open to error. People
may attend a hospital or clinic, offer their arm for blood tests,
or sign a document for example through acquiescence and passivity.
Similarly, they may refuse to attend, comply or cooperate through
fear, past experiences, lack of information or poor understanding.
BEST INTERESTS
Ascertaining best interests in terms of preferences,
wishes and feelings, and promoting a person's capacity to participate
is a skilled job. Any person charged with this duty needs to be
able to use techniques known to reduce informational contamination
in gaining access to a person's views and to separate their own
needs from those of the vulnerable adult.
GENERAL AUTHORITY
"It is lawful for any person to do an act
when providing any form of care for another person (P) if . .
. P lacks, or the person believes that P lacks, capacity in relation
to the matter in question, and, in all the circumstances it is
reasonable for the person to do the act."
This may leave vulnerable adults open to abuse
in situations where the carer, whether family, friend, partner
or paid, is operating in relative isolation with an acquiescent
adult whose ability to complain or to access people who might
hear a complaint is limited. It also begs the question of what
is "reasonable".
Restrictions on the General Authority include
"restriction of movement, whether or not P resists".
This may have implications for legitimate physical interventions
designed to prevent or minimise harm to the person or others but
is also open to the same abuse as the authority to act in that
a person who "reasonably believes" that restriction
is necessary to avert a "substantial risk of significant
harm to P" may feel able to apply such a restriction. The
Draft Bill does not mention of the use of restrictions to prevent
harm to others. Learning disability services often provide for
people whose behavioural repertoire includes physical aggression
and self-harm. Many are not subject to any Section of the Mental
Health Act and so methods of control and restraint often used
in that context do not apply. Instead there are agreed protocols
that specify last resort physical interventions in the interests
of the safety of the individual and those around them. Failure
in this Bill to provide for the safety of others could lead to
serious difficulties in providing safe community services for
adults with challenging behaviour.
LASTING POWERS
OF ATTORNEY
An LPA can only be created by someone who has
capacity to do so and in relation to themselves. It is not clear
how a person with a learning disability might make an LPA, how
capacity to do so might be assessed or, in fact, how one might
gain informed consent to begin the process. While it is clear
that many people have caring families who will do their best for
a vulnerable adult, many others have families or carers whose
actions are controlling at best and sometimes descend into the
abusive and exploitative. Even those who would see themselves
as having the best motivations regarding their vulnerable relative
may be emotionally rather than objectively driven and can often
fail to allow the freedoms to which other adults of similar capabilities
have access. Some user groups are very concerned about the powers
families may be given under this Bill and want to see more independent
advocacy instead.
Those acting on behalf of a vulnerable adult
should be open to scrutiny so that concerns can be raised. The
Child Protection model may be of some help in establishing protocols
particularly as some of the issues are similar and range from
wilful abuse of a victim who is unable to report this to unwitting
abuse of someone who is unaware that they are being abused but
whose quality of life could be significantly improved if certain
actions were to be changed.
In terms of Personal welfare, the LPA does not
allow an individual "to use, or threaten to use, force to
secure the doing of an act which P resists, or to restrict P's
liberty of movement whether or not P resists, unless . . . "P
lacks, or the donee (the person appointed to the LPA) reasonably
believes that P lacks, capacity in relation to the matter in question
and, the donee reasonably believes that it is necessary to do
the act in order to avert a substantial risk of significant harm
to P . . ."
This carries the same risks as the General Authority
to act reasonably but may be more likely to occur in private.
Wherever matters of physical restriction may be thought advisable,
risk assessments and clear protocols should be in place for determining
all aspects of the intervention and reviewing its necessity. The
Bill needs to make clear the duty of those with General Authority
or LPA responsibilities to consult professionals and work within
clear guidelines in such situations.
A further serious concern is the section of
the Bill that seems to give those with LPA the authority to make
decisions about a person's personal welfare which extends to "giving
or refusing consent to the carrying out or continuation of a treatment
by a person providing health care for P . . . if P lacks capacity
to give or refuse that consent".
It does not extend to life-sustaining treatment
unless there is provision within the LPA agreement about this
but might be used to deny access to a variety of activities and
treatments that are not life-sustaining but nevertheless valuable
to the vulnerable adult. An example might be counselling or group
work aimed at enabling the person to become more confident and
assertive thereby making them less malleable to the person with
LPA, or denial of contraceptive advice/treatment in accordance
with the beliefs or preferences of the agent but not necessarily
the vulnerable adult.
One wonders how the vulnerable person represents
themselves if the carer does not see the potential for capacity
or actively or unconsciously denies this.
These concerns extend to other areas affected
by the LPA. Some measure of objectivity, scrutiny and review needs
to be built into the LPA agreement to avoid the very real possibility
of unwitting or malicious manipulation, exploitation and abuse
of adults whose capacity will not return and whose access to those
who might notice their predicament may be restricted by an individual
with legal powers acting apparently in their best interests.
Many people with learning disabilities are already
recipients of specialised services and so a provision exists within
which structures might be developed to assess and monitor capacity
issues, including the activities of those with LPA and general
authority.
LACK OF
CAPACITY OF
THE DONEE
This refers to the person with LPA responsibilities.
We have experienced difficulties when the parent of an adult with
learning disabilities becomes unwell either through mental health
problems or a dementing process. Assessment of the parent can
be protracted because understandably they have the same rights
to careful evaluation as anyone else. In the meantime the vulnerable
and dependent adult may be neglected and sometimes abused. An
example is of an elderly woman who began to dement and refused
meals-on-wheels and home help for herself and her mid-40s son
with learning disabilities and a profound hearing problem who
was also not allowed to leave the house. Both were undernourished,
dirty and had minor infections. There was no legislation that
allowed us to remove the son against his will for his own protection
or to enter the house without permission. The Bill needs to be
sure to make provision for eventualities of this kind so that
both vulnerable adults can be properly and lawfully protected.
The LPA can be cancelled or revoked at any time
by the donor while they have capacity to do so but it is not clear
how this might be assessed nor is there any indication of how
LPA might be challenged by someone other than the donor. The commentary
makes it clear that a doctor can challenge the donee of General
Authority, LPA and Deputy if they are thought to be in breach
of their duties but seems to refer to life-sustaining treatment
rather than qualitative matters of health, care and welfare. No
other health practitioner is mentioned and, since most adults
with learning disabilities are more likely to have contact with
specialists other than medical practitioners, this seems to be
a serious omission.
COURT OF
PROTECTION AND
THE APPOINTMENT
OF DEPUTIES
For some adults with learning disabilities,
the Court of Protection is the most likely source of an advocate
in respect of capacity issues given that they may be deemed unable
to appoint an LPA. For others there is the delicate balance of
rights and protections such that principles dictate we should
assume capacity—in this case to make an LPA, while experience
suggests we should assess any vulnerable adult intending to make
a decision of such significance.
While the whole ethos of learning disability
services is to promote independence and support people in taking
major (and minor) decisions in their lives, the very fact of requiring
a service from us suggests that the individual is vulnerable and
that the thinking and reasoning necessary to a given decision
may be beyond the capabilities of the individual.
Professionals in this field have always walked
a delicate path between allowing people to make mistakes and using
persuasion to gain cooperation with an assessment process. The
draft Bill, in its implicit emphasis on those with a history of
capacity and its explicit assumption of capacity, gives no guidance
to those of us who need to assume capacity in principle while
suspecting incapacity in practice and to find a way of offering
assessments of capacity to people whose vulnerability may lead
them to make uninformed decisions that would be in line with the
content but not the spirit of the Bill. It would be helpful to
have acknowledged the particular difficulties associated with
those adults whose condition vis a vis capacity is enduring and
neither deteriorating nor likely to improve, who have the right
to protection from mistakes that may carry serious consequences,
but who also have the right not to have their capacity challenged
simply because they have a learning disability.
Many adults with learning disabilities are in
contact with local specialist services. Structures exist to provide
multidisciplinary reviewing of needs and standards. Those for
whom a Deputy is appointed by the Court of Protection would seem
very likely to be known and so the Deputy might usefully operate
within this framework since they too have an obligation to take
the views of others into account when making decisions on behalf
of the person lacking capacity.
EXAMPLES
Assumption of Capacity
A 21-year-old woman with Down's Syndrome was
referred for sterilisation. The Consultant Gynaecologist interviewed
her with her mother and she seemed to be clear that sterilisation
was what she wanted. Charlie was bright, communicative and self-assured,
nevertheless the consultant was concerned that her capacity to
consent was being "taken a little too readily". Charlie
was referred to the learning disability service where a specialist
interview showed that the driving force behind the request for
sterilisation was Charlie's mother whose fear of disability extended
to telling Charlie that all her babies would be crippled and die
in pain. Charlie herself believed that sterilisation was reversible
and that she could have children later, saying that she wanted
them to be normal and happy "like me". Eliciting this
information took 5 hours over three appointments. Charlie has
not been sterilised.
Jim was an elderly man who had lived in institutions
much of his life. At some stage, a bladder disorder had been suspected
and Jim had a cystoscopy under general anaesthetic. Although autistic,
Jim was able to describe the main elements of the investigation
and was clearly consenting to having the same procedure again.
Unfortunately, this took place under local anaesthetic, causing
Jim a great deal of discomfort and fear. When further investigations
were recommended, Jim refused because of the recent bad experience
but because cancer was suspected, the investigation was thought
to be essential and in Jim's best interests. A multidisciplinary
meeting took responsibility for recommending that the investigation
went ahead and specifying that this should be under general anaesthetic.
A cancer was found and Jim was treated.
A man with ASD was referred for dental treatment.
Paul used language on few occasions and was thought unlikely to
have capacity. His community nurse had prepared a booklet for
him about the proposed treatment. This contained pictures of Paul,
the hospital, the dentist's chair, a nurse, and various other
aspects of the procedure. Paul's carers had gone through this
with him several times at home, describing each picture and telling
Paul what it meant. Paul had said very little. At interview, Paul
was anxious, yawning, giggling and clapping at times. He was not
able to give a spontaneous account of the information he had been
given, nor would he answer any specific questions about it. Looking
at his book, Paul again seemed unable to make any relevant comment,
at one point closing the book and putting it away. Suddenly however,
he produced a sentence in which the key elements of "hospital",
"bed" and the death of his parents (both in hospital)
were linked. Asked about his teeth, Paul said "let them stay
there" and "no hospital", closing the book again.
Further details of the interview seemed to show that Paul made
a clear link between the dental treatment, the hospital and the
death of his parents. He also knew what the dentist intended to
do (remove teeth) and declined. Discussion with the dentist concluded
that the treatment was not essential, only desirable, and that
she could continue to monitor Paul's dental health since he was
very amenable to examination.
We agreed to review should treatment become
essential. This assessment took over an hour and was based on
the skilled input of a community nurse and Paul's carers.
REASONABLE BEHAVIOUR
A woman with Down's Syndrome is living with
a paid carer who appears skilled and attentive. However, Jill
has had a number of unexplained illnesses, weight loss and a great
deal of medical attention to the point where surgery was proposed.
At one point Jill said that her carer was injecting her in the
abdomen, raising concerns about Munchausen's Syndrome by Proxy.
We were not able to get Jill's consent to blood tests without
alerting her carer and Jill did not want to consider alternative
residential placements, apparently idolising her carer. Our concerns
were that the carer had succeeded in convincing a specialist consultant,
whose letters expressed his faith in her competence, that Jill
was sufficiently ill to require surgery despite the absence of
supportive evidence from any other source. Eventually the carer
was subtly challenged on the basis of the evidence, Jill began
to gain weight, and the consultant was asked to review his position
vis a vis a condition he had diagnosed as irreversible on the
basis of the carer's history. Jill did not have surgery, she continues
to thrive and the carer is closely monitored. This example illustrates
the difficulties that might be associated with both the General
Authority and the LPA where those given the powers are able to
exercise authority without challenge from the vulnerable adult
or non-medical professionals who know the person better than the
treating clinician.
SUGGESTIONS
— The presumption against incapacity
is modified in circumstances where there is good reason to believe
that the person's capacity may be compromised. Evidence would
include significant intellectual deficit. Skilled assessment of
the individual vis a vis the decision in question would be mandatory.
— People with General Authority, LPA,
or Deputy responsibilities discharge their duties in cooperation
with the appropriate specialist teams.
— Other Professionals, in addition
to medical practitioners, are able to challenge the actions of
a person with LPA or Deputy duties.
— People with LPA or Deputy responsibilities
should not be able to refuse consent to health services that are
beneficial and/or quality of life enhancing on behalf of a person
lacking capacity without multidisciplinary agreement.
— Explicit provision should be made
for adults with severe learning disabilities to have an appropriate
representative with regard to consent issues, especially where
an LPA cannot be appointed or it is thought inadvisable that the
person choose their own.
— Assessment of individuals for capacity
to make specific decisions should be carried out by professionals
trained in non-contaminating interview techniques. These interviews
should be recorded and open to scrutiny.
— Assessments for capacity should be
made as close as possible to the moment at which the decision
is required so that evaluations of capacity are as current as
possible and not reliant on clinicians who may not have the necessary
skills or time.
— The decision about capacity will
be a joint one involving the treating clinician (or other professional),
and the assessor in consultation with others who know the person
well. Where treatment is the goal, it can be helpful to think
of this as Essential (must be done now), Urgent (necessary in
the near future) or Desirable (pre-emptive or preferable) in determining
how to exercise a "best interests" judgment.
— Where provisions such as multidisciplinary
teams, Adult Protection, specialist advocacy and reviewing structures
exist, these should support, inform and monitor the activities
of people with General Authority, LPA and Deputy responsibilities.
— Child Protection, Adult Protection,
and Vulnerable Witness protocols can inform implementation of
the new Bill.
The content of the Draft Bill would benefit
from some adjustment in order to achieve its aim in spirit of
the balance of protection and independence for vulnerable adults.
While user groups are raising objections to certain aspects of
it, all seem clear that the status quo is unacceptable and hope
to see enactment of a Bill that meets their needs in the near
future. The key to achieving the objectives of the Bill would
seem to lie not in assigning powers and responsibilities to a
single key individual such as an LPA or Court Deputy but in ensuring
open, transparent and objective communication among all concerned
with the welfare of any vulnerable person. Good models of multidisciplinary
practice exist, showing that empowerment of the person fully or
partially lacking capacity by means of skilled information giving
and support brings benefits well beyond the primary notion of
capacity per se. This Bill can either make use of these
models by integrating with them or it can sit outside creating
the potential for unnecessary conflict. We hope for the former.
Dr Suzanne Conboy-Hill
Consultant Psychologist for People with Learning
Disabilities
September 2003
Annex 1
LETTER FROM
SERVICE USER
Ms Lord expressed her concerns to her counsellor
after reading an article in Community Care. We asked her if she
would like to put these in writing to send with our comments.
Ms Lord is an articulate person who takes an interest in national
politics and while there are some misunderstandings which her
counsellor is helping to unravel, her letter illustrates the anxieties
she experiences at the idea of people who do not know her well
taking control of her life.
Annex 2
Submitted by Katie Lord
When I read some information on the Incapacity
Bill I was disturbed when they said should somebody need an advocate
they should be unpaid to ensure that person has no financial interests.
Because it seems to be suggesting that people from
social services are being pushed out and that the next time they
want to represent a person with learning difficulties ie for instance
one of Suzanne's patients it looks to me as if they're insinuating
a doctor, psychologist or psychiatrist's opinions no longer counts.
I hate to say this but I should like to know one thing; should
someone like me or me ever need an advocate is that unpaid advocate
who knows the well qualified to help me or represent me?
Andrew Lee says the Bill goes against everything
that valuing people stands for well yes in many ways I agree.
And it also conflicts with the Human Rights Act 1998. Well I haven't
got any information on the Human Rights Act but I would like to
find the information. This is another thing I find frustrating.
As a person with learning difficulties I don't feel as if I know
all my rights—I know that sounds silly. Andrew Lee also
says this Bill takes away people's right to chose that's very
disturbing. Then he goes on to say if Tony Blair allows it to
go through he seriously questions the Prime Minister's commitment
to valuing people. Then he goes on to say if the Bill goes through
he expects people with learning difficulties to be out on the
street. Well I have been out on the street with dangerous people
when I was placed in Hove with an unsuitable carer. I hated the
place so much I decided I would sleep rough with a total stranger
because I couldn't stand where I was living. I never want to be
in that situation again. And furthermore, nobody in my situation
should have to be faced with that nightmare possibility. This
country has a big enough problem with homelessness without turning
people with learning difficulties in their millions out on the
street.
I don't want this Bill to go through really. A few
frightening things have been suggested:
— If the Bill is forced through, people
with learning difficulties may end up on the streets.
Once again this Government has failed to recognise
the good people with learning difficulties can contribute to our
society. We don't all picture ourselves living happily ever after
in those big institutions and psychiatric hospitals.
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