Dementia: protection of
human rights
Oxford Brookes
11 June 2013
Rachel Griffiths
Care Governance Lead, Oxfordshire County
Council
Consultant in human rights-based practice
Magna Carta (1297)
 "No freeman shall be taken or
imprisoned, or disseised of his freehold,
or liberties, or free customs, or outlawed,
or exiled, or any otherwise destroyed;
nor will we not pass upon him, nor
condemn him, but by lawful judgment of
his peers, or by the law of the land."
Legal frameworks for
protection
 European Convention on Human Rights
 Mental Health Act 1983
 Human Rights Act 1998
 Mental Capacity Act 2005
 Deprivation of Liberty Safeguards 2009
European Convention on
Human Rights
 Product of the Council of Europe set up
in 1949 in aftermath of WW2
 Largely protects civil and political rights
 Human Rights Act 1998 enshrines the
ECHR in UK Law so that it is unlawful for
a public body to act in a way that is
incompatible with ECHR rights
Human Rights Act 1998:
articles relevant to care
 Article 2 –Right to life
 Article 3 – Prohibition against torture and
inhuman or degrading treatment
 Article 5 – Right to liberty and security of
person
 Article 8 – Right to private and family life
 ‘very essence ... is respect for human dignity and
human freedom’
Pretty v United Kingdom (2002)
MCA: human rights for those
aged 16+ who might lack
capacity
 MCA Principles:
 Presumption of capacity (not incapacity)
 maximisation of capacity: empower people to
make their own decisions
 Unwise decisions don’t necessarily mean lack of
capacity
 Decisions must be in P’s best interests
 Look for the least restrictive option that meets the
person’s need
MCA s.1
What does ‘capacity’
mean?
 It is ‘decision specific and time specific’:
 Can the person make THIS decision at
the time it needs to be made?
 Must be able to: understand, retain, use
and weigh information relating to the
decision, and then communicate it.
Using the MCA to plan in
advance
Planning Ahead
 Advance Decision to Refuse Treatment
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Must have capacity to do this
You can only REFUSE treatment, you can’t
insist on a certain treatment being provided
You CAN refuse in advance life-sustaining
treatment but special rules apply
You can always change your mind if you
have the mental capacity to do so
Lasting Powers of
Attorney (LPA)
 Before the MCA, Enduring Powers of
Attorney (EPA), covering financial
matters
 MCA created 2 LPAs: one similar to EPA
 New LPA for health and welfare
 Can give trusted relatives/friends right to
make health/welfare decisions, but they
are then bound by MCA Code of Practice
Do all you can to empower
someone
 Right setting, right time of day, right
mood
 Explain simply and make sure the person
has any aids they need (including
friendly support)
 Remember an “unwise decision” doesn’t
of itself mean lack of capacity
Human Rights Act
Article 8
 Everyone has the right to respect for his
private and family life, his home and his
correspondence.
 There shall be no interference by a public
authority with the exercise of this right except
such as is in accordance with the law and is
necessary in a democratic society [...] for the
protection of health or morals, or for the
protection of the rights and freedoms of others.
What freedoms does
Article 8 protect?
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To text, phone, e-mail or write
To choose own friends
Access to fresh air and exercise
Privacy in washing and toilet
Privacy for visits
Confidentiality of medical
records
 Freedom from intrusion into
 private life
 Freedom from searches of living
space and person
Get to know the person (1)
 Jimmy is 78, and has dementia: he can be aggressive
and irritable.
 Staff panic when he is found trying to take the back
door off its hinges: they discuss how to restrain him
 His wife visits, and explains he used to be a carpenter,
and had noticed the door was sticking.
 The home manager gives him access to some tools,
and staff bring in small items of furniture for him to
mend.
How should we approach
‘risk’?
 What good is it making someone safer if
it merely makes them miserable? We
must tolerate acceptable risks as the
price appropriately to be paid in order to
achieve some other good – in particular
to achieve the vital good of the elderly or
vulnerable person’s happiness
Lord Justice Munby, re MM
Get to know the person (2)
 Mick has early onset dementia: he finds it hard
to talk. His wife has died recently, and he has
come to live in a small care home.
 Staff find him a ‘handful’. In particular it takes
up to 4 people to restrain him to be shaved:
staff justify this as in his best interests.
 A neighbour comes to visit, and says, ‘Why,
Mick, I’ve never seen you without your beard
before!’
Proportionality: a golden
thread
 Any interference in the rights of someone
lacking capacity to consent to your action
must be a proportionate response to
 The likelihood of the person suffering
harm if we don’t act, and
 The seriousness of that harm.
 Need to consider level of incapacity
when thinking about autonomy
Warning from CQC
research
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A care home had a ‘no restraint’ policy
therefore restraint was not acknowledged…
Therefore it was not identified as such…
Therefore not described clearly in care plans ...
Therefore a less restrictive option not sought…
Therefore there was no learning from incidents
(which were not correctly recorded in case
files)...
‘We never use restraint’
 MCA defines restraint not only as the use (or
threat) of force to make someone who lacks
capacity do something they’re resisting, but
any restriction on their movement whether
they resist or not.
 Locked doors do restrict movement; they may
well be lawful, if in a person’s best interests,
but must be recognised as restraint and the
effects minimised as much as possible.
Deprivation of Liberty
Safeguards (‘DoLS’)
 Protect the human rights of people (18+)
who lack capacity to consent to staying
in a hospital or care home, for treatment
or care in their best interests
 These Safeguards do not authorise
treatment
 They enable a person to challenge a
very restrictive regime
DOLS fit inside MCA which
fits inside human rights law
‘Rules of the House’
 Experienced as arbitrary, disempowering:
 You must go to bed at 9 to be safe;
 you can’t have a mobile phone because one
person used it to order drugs;
 you can’t go out alone because one resident
got lost;
 your family can’t bring in a home-made curry
because someone once had an upset tummy
How do general
restrictions arise?
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Overarching imperative to keep people safe
Fear of things going wrong
Often a chaotic changing situation
Physical/psychological restraint a default
option for everyone, rather than last resort
 Balance between risk and autonomy loaded
towards risk avoidance
 Staffing shortages and strains
Misleading language
 Language of restraint is sometimes blurred:
“we never restrain anybody” yet evidence of
restraint in MCA terms (locked doors to, say,
kitchen, outside space, wider world)
 Rooms used for isolation in care homes can be
given innocuous names, e.g. The Blue Room,
the Quiet Room…“duty of care” used to
overrule autonomy
 “activities” or sensory room dull, unstimulating
MCA as lever to improve
practice
 Process for best interests decision-making in
complex, individual, HUMAN contexts
 Steeped in regard for autonomy
 MCA-compliant care plans only restrict
freedoms, on an individual basis, where
necessary to prevent harm and
proportionate to the likelihood and
seriousness of that harm
Sources of information
and advice
 SCIE http://www.scie.org.uk/mca
 Rachel Griffiths: Consultant in MCA
and human rights-based practice
 rachel.griffiths@talktalk.net