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FREDA: A human rights-based approach to healthcare

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Abstract

The introduction of the Human Rights Act 1998 in the UK has not led to widespread knowledge and understanding in patient and carer groups, healthcare professionals or at an organisational level. This knowledge deficit has been recognised by government bodies and other agencies, which has led to the introduction of a bottom-up human rights-based approach that can be used by individuals and organisations alike in everyday practice. It avoids the need to have technical knowledge of the Human Rights Act and associated case law and is based upon concepts that underpin all the articles of the Act. The human rights-based approach is the process by which human rights can be protected by adherence to underlying core values of fairness, respect, equality, dignity and autonomy, or FREDA.
indicators to using job planning’ as the means of
determining a doable consultant job.
Revised joined guidance
The newly issued revised joint guidance continues this
approach. The main authors are again the Royal College of
Psychiatrists, NIMHE, the NHS Confederation, and the
Department of Health. Although foundation trusts are able
to set their own recruitment processes, they have agreed the
guidance and can be expected to follow it. Population norms
and indicative case-loads have been abandoned in favour of
team working and job planning. The place of the consultant
psychiatrist within the team in bringing specialist expertise
to complex treatment decision-making is highlighted, but
the emphasis is on the capacity and skill-mix of the team
and not of any individual within it. The ‘creating capable
teams’ approach and consultant job-planning are both seen
as pivotal in achieving this.
College advice continues to play an important part in
ensuring that consultant posts are viable. The process is
clearly laid out for employers, with a description of the
differing functions of regional advisors, specialty regional
representatives and College assessors. There is also an
appendix in which each of the College faculties has
produced an outline of the role of a consultant psychiatrist
in its specialty. These describe the different functional
teams that exist within each specialty and how the
consultant contributes to them.
The guidance also gives much helpful advice on the
process of recruitment and particularly the many ways in
which users and carers can participate in the selection
process. There are a number of examples of successful
involvement of users and carers at all stages.
Finally, there are useful flowcharts and templates for the
creation of model job descriptions and person specifications.
Much of these are, however, deliberately left blank in order
for a service to be able to describe the specific model of
working within which its consultant posts exists.
Any document giving guidance on employment or
workforce only has a limited shelf life. The plan is that
this revised guidance will be maintained in web-based form
to permit easy updating. It will be fully reviewed again in 3
years’ time when perhaps we will indeed have moved on to
having a truly creative capable workforce.
About the author
Andrew Clark is the Royal College of Psychiatrists Workforce Lead and
North West Regional Advisor, Lead Consultant and Honorary Senior
Lecturer, Young Persons’ Directorate, Greater Manchester West Mental
Health NHS Foundation Trust.
References
1Department of Health, NHS Confederation, Royal College of
Psychiatrists, National Institute for Mental Health in England. Joint
Guidance on the Employment of Consultant Psychiatrists. Department of
Health, 2009.
2Royal College of Psychiatrists, NHS Confederation, National Mental
Health Partnership. Joint Guidance on the Employment of Consultant
Psychiatrists. Department of Health, 2005.
3Royal College of Psychiatrists. Model Consultant Job Descriptions and
Recommended Norms. Occasional Paper 55. Royal College of Psychiatrists,
2002.
SPECIAL ARTICLES
Clark New Ways of Working is dead, long live New Ways of Working
FREDA: a human rights-based approach
to healthcare
Martin J. Curtice,
1
Tim Exworthy
2
The Psychiatrist (2010), 34,150
-
156, doi: 10.1192/pb.bp.108.024083
1
Hollyhill Unit, Birmingham,
2
Memorial
Hospital, Oxleas NHS Foundation
Trust, London
Correspondence to Martin J. Curtice
(mjrc@ukonline.co.uk)
Summary The introduction of the Human Rights Act 1998 in the UK has not led to
widespread knowledge and understanding in patient and carer groups, healthcare
professionals or at an organisational level. This knowledge deficit has been recognised
by government bodies and other agencies, which has led to the introduction of a
bottom-up human rights-based approach that can be used by individuals and
organisations alike in everyday practice. It avoids the need to have technical
knowledge of the Human Rights Act and associated case law and is based upon
concepts that underpin all the articles of the Act. The human rights-based approach is
the process by which human rights can be protected by adherence to underlying core
values of fairness, respect, equality, dignity and autonomy, or FREDA.
Declaration of interest M.J.C. is a member of the Special Committee for Human
Rights, Royal College of Psychiatrists; T.E. chairs the Special Committee for
Human Rights and is a member of the Department of Health’s Advisory Group on
Human Rights in Healthcare.
150
The Human Rights Act 1998 came into force in October 2000
and incorporates most of the rights protected under the
European Convention on Human Rights (ECHR). It must be
considered in all UK courts, including mental health review
tribunals. Public authorities, which include National Health
Service (NHS) bodies, have a duty to take steps to protect
(‘positive obligations’) the human rights of individuals.
Avoiding violation of the ECHR could be construed as a
negative approach towards these civil and political rights. A
more constructive endeavour is to embed human rights
values within the culture of the organisation. In this way
subsequent policy and decision-making is framed around
such values. However, more recently a coordinated
approach can be discerned in healthcare, which adopts a
human rights-based approach. This approach to healthcare
is based on the premise that ignoring or violating a person’s
human rights has a detrimental effect on their health and,
conversely, using this approach can improve health
outcomes and deliver better quality, ‘person-centred’
healthcare.
The Department of Health
1
has identified five key aims
of a human rights-based approach to healthcare:
1 putting human rights principles and standards at the
heart of policy and planning;
2 empowering staff and patients with knowledge, skills
and organisational leadership and commitment to
achieve human rights-based approach;
3 enabling meaningful involvement and participation of
all key stakeholders;
4 ensuring clear accountability throughout the organisation;
5 non-discrimination and attention to vulnerable groups.
Such an approach is not completely revolutionary. For
example, in 2001 the National Service Framework for Older
People
2
advocated a ‘cultural change so that all older people
and their carers are always treated with respect, dignity and
fairness’. This has been developed into the ‘Dignity in Care’
campaign promoting dignity towards older people in health
or social care settings and acknowledging that organisations
which centre service delivery around the dignity of the
recipient can be regarded as high-quality.
3
The human rights-based approach is a bottom-up
approach (as opposed to the top-down variety requiring
detailed knowledge of the Human Rights Act articles and
associated case law) whereby the concepts which underpin
all the articles of the Act are operationalised and put into
everyday practice without the need for technical knowledge
of the Act. Although some advocate making explicit the
links between human rights values and the Act,
4
we set out
to demonstrate in this paper that clinicians should already
be familiar with these values even if the language seems
unusual. We will show that echoes of the human rights
principles can be found in the existing clinical literature,
although there will be a significant emphasis on mental
health literature (as the principles can easily apply to all
medical specialties). Moreover, it has now been proposed
that revalidation of medical practitioners’ licences to
practise should involve patients in helping to define good
healthcare with a focus on treating patients with respect
and dignity.
5
The FREDA principles
In essence, the human rights-based approach is the process
by which human rights can be protected in clinical and
organisational practice by adherence to the underlying core
values of fairness, respect, equality, dignity and autonomy
(FREDA). These principles are the basics of good clinical
care sewn into what clinicians already do on a daily basis, a
view espoused in the latest edition of the College’s Good
Psychiatric Practice.
6
Although it is helpful to clarify the meaning attached to
each principle, it is also artificial to consider the core
principles separately since a human rights-based approach
essentially involves all five values being brought to bear on a
particular issue. These principles are used to inform
decisions, not to determine them. All of the principles
must inform each decision, but the weight given to each
principle in reaching a particular conclusion will depend on
the issues under consideration. It may be the case that in
making some decisions a greater weight should be given to
some of the principles over others. That is not to say that in
making a decision any of the principles should be
disregarded.
Fairness
This principle demands that due consideration is afforded
to the person’s opinion, giving them the opportunity to have
that point of view expressed, listened to and weighed,
alongside other factors relevant to the decision to be taken.
The process should also be free of arbitrary considerations,
thereby imparting a degree of certainty to the process and
allowing others to determine how they might be treated in
similar circumstances. There is also a link with the principle
of equality (see later) in ensuring that the decision-making
is free of discriminatory practices.
Clinical illustrations
The principle of fairness is relevant when concerning the
lawful detention of individuals and equally the de facto
detention of ‘Bournewood’-adherent incapacitated indivi-
duals who lack the capacity to consent to or refuse
admission to hospital, for example, some individuals with
intellectual disability and the elderly. The Mental Health
Act 1983 sets out the purpose and procedure for formal
detentions and the safeguards it contains introduce
certainty and procedural rigour while removing arbitrari-
ness from the process. In the Bournewood case, the
European Court of Human Rights held that such safeguards
were lacking and Article 5 of the ECHR, guaranteeing the
person’s right to liberty, had been violated.
7
The UK
government has since amended the Mental Capacity Act
2005 with the introduction of ‘deprivation of liberty
safeguards’ to ensure a person is only deprived of their
liberty following a structured consideration of their needs
and there is a regular review of its necessity.
8
Fairness is directly linked to Article 6 of the ECHR, the
right to a fair trial. A mental health review tribunal hearing,
for example, contains several procedures that need to be
considered during the decision-making process. The tribunal
panel is independent of the detaining authority and impartial.
The detained person and a legal representative are present
SPECIAL ARTICLES
Curtice & Exworthy FREDA: a human rights-based approach to healthcare
151
and given an opportunity to set out their case and challenge
the evidence against the person before the decision is made.
The procedure also requires disclosure of relevant docu-
ments. In short, decisions and decision-making processes
should be fair, open, timely and impartial. In the case of
mental health review tribunals, there are tribunal rules
9
setting out a degree of procedural rigour to help ensure
fairness in the hearings process.
Respect
Respect is the objective, unbiased consideration and regard
for the rights, values, beliefs and property of other people.
Respect applies to the person as well as their value systems
and implies that these are fully considered before decisions
which may overrule them are taken. Respect is construed
from the actions shown to an individual by others and can
be demonstrated by courteous communication, which
imbues the person with a sense of being valued through
taking time to get to know them as individuals, not as
‘numbers’ or ‘conditions’: person-centred care.
10
Organisa-
tional bureaucracy and administrative burdens can act as
powerful obstacles to achieving this.
The Revised Code of Practice to the Mental Health Act
11
includes respect as one of the fundamental principles guiding
implementation of the Act. The principle demands that
‘People taking decisions under the Act must recognise
and respect the diverse needs, values and circumstances
of each patient, including their race, religion, culture,
gender, age, sexual orientation and any disability. They
must consider the patient’s views, wishes and feelings
(whether expressed at the time or in advance), so far as
they are reasonably ascertainable, and follow those
wishes wherever practicable and consistent with the
purpose of the decision.’
The wording of the second sentence is similar to the
language of the ‘best interests’ test within the Mental
Capacity Act 2005, reminding clinicians that the respect
principle survives any loss or impairment of capacity of the
individual being offered care.
Guidance from the General Medical Council on
consent,
12
under the principle of partnership, emphasises
the need to facilitate and respect patients’ treatment
decisions as one of the core principles in providing care.
The Royal College of Psychiatrists has also provided
guidance in this area.
13,14
Of particular relevance in the
2004 edition of the College’s Good Psychiatric Practice
13
is
the section on the ‘trusting relationship’, where it states
that ‘The psychiatrist will . . . respect patients’ privacy and
dignity . . . (and) . . . be mindful of the vulnerability of some
patients to exploitation within the therapeutic relationship’.
Clinical illustrations
Respect for privacy (under Article 8 of the Human Rights
Act) has been termed ‘the ultimate embodiment of a right to
be free from external intervention’
15
and may offer some
measure of protection in situations of enforced psychiatric
treatment.
16
Article 8 promotes respect for the person and
physical integrity, respect for an individual’s home and for
privacy. Private life is interpreted broadly to include ‘issues
such as personal choices, relationships, physical and mental
well-being, access to personal information and participation
in community life’.
17
In healthcare the ‘fundamental importance’ of
respecting the ‘crucial . . . and vital principle’ of confidenti-
ality and privacy of medical information has been clearly
stated by the courts.
18
However, there are circumstances
when it may be necessary to share or disclose confidential
information, even to non-clinical personnel.
19
On such
occasions the concept of proportionality has an important
application
-
the degree and extent of disclosure of
information has to be proportionate to the nature of the
presenting clinical situation. An assessment of the reasons
for disclosing information is required and a balance must be
reached between those reasons and the person’s right to
privacy and confidentiality.
Equality
The many facets to expressing the principle of equality,
including non-discrimination, overlap with respect. The
NHS itself was founded on the principle of equality: equity
of access and equity of treatment.
20
Moreover, the NHS
Constitution
21
lists equality first among the seven key
principles that guide the NHS. Differences in clinical need
have to be determined through procedures that remove
arbitrariness from the decision-making process.
The Commission for Equality and Human Rights was
established under the Equality Act 2006, which gave it the
legal responsibility to tackle discrimination and promote
equality on the grounds of disability, gender and race. The
Commission has a statutory general duty to encourage and
support the development of a society in which, inter alia,
‘each individual has an equal opportunity to participate’
(Section 3). The Act does not specifically mention ‘mental
health’ and the phrase is also absent from the Commission’s
Equality Scheme 2008/09,
22
although one would assume that
those diagnosed with mental disorders are contemplated
when the Commission espouses responsibilities to ‘promote
equality of opportunity between disabled people and others’
and in promoting ‘positive attitudes towards disabled
people’. The Commission will also want to have regard to
the College’s manifesto, ‘Fair Deal for Mental Health’, in
tackling inequality in mental healthcare and in particular
discrimination and stigma, which is one of the eight priority
areas of this 3-year campaign.
23
Clinical implications
Discrimination occurs when someone is treated in a
different way to someone else in a similar situation, or
where people in very different situations are treated the
same. An action or decision is considered discriminatory if
it cannot be reasonably and objectively justified. Such a case
was the subject of a House of Lords judgment
24
whereby a
restrictive interpretation of the ‘public function’ provision
in the Human Rights Act meant those managing care homes
or delivering privatised or contracted out public services did
not have to have regard to the standards of care, treatment
and procedural protection of residents expected as if they
had been delivering a ‘pure’ public function, such as in an
NHS establishment. An amendment in the Health and
Social Care Act 2007 brought an end to this inequitable
situation between the public and private sectors.
SPECIAL ARTICLES
Curtice & Exworthy FREDA: a human rights-based approach to healthcare
152
The Disability Rights Commission reported on inequal-
ities in the healthcare provided to people with mental
health problems or intellectual disabilities compared with
the general population.
25
These groups were found to be
less likely to receive some standard, evidence-based health
checks and treatments (such as health screening or statin
treatment) as well as facing access and attitude barriers in
using health services.
Individuals with mental disorders remanded in custody
or serving terms of imprisonment are recognised as being at
a higher risk of receiving a lower standard of mental
healthcare than their counterparts in the community. The
Joint Committee on Human Rights has underscored the
importance of the principle of equivalence between prison
healthcare and that enjoyed by the wider community:
‘The principle of equal treatment is the fundamental
underlying notion of human rights. That equality of
treatment should be upheld in relation to mental
healthcare as well as in relation to physical healthcare
is, therefore, not only an unsurprising, but a necessary
component of compliance with the positive obligation
to protect Convention rights under Articles 8, 3 and 2
ECHR.’
26
However, the Committee was also careful to warn that
better prison mental healthcare ‘should not be used as a
substitute for care and treatment in NHS facilities’.
Dignity
The importance of human dignity has been emphasised in
international human rights instruments from the Universal
Declaration of Human Rights (Article 1) in 1948 onwards. In
the United Nations Convention on the Rights of Persons
with Disabilities, dignity is the only principle specifically
mentioned in the Statement of Purpose (Article 1). In 2004,
the Council of Europe issued recommendations to member
states pertaining to the protection of human rights and
specifically the dignity of persons with mental disorders.
27
The UK, however, opted out on certain recommendations
because it knew the Mental Health Act Amendments 2007
and the Mental Capacity Act 2005 would eventually not be
fully compliant with the recommendations as a whole.
28
Although ‘dignity’ is not explicitly mentioned in the ECHR,
it is said to be implicit in almost every one of the
Convention’s articles and, following the introduction of
the Human Rights Act, the principle of dignity has been
accorded prominence in domestic jurisprudence: ‘The
recognition and protection of human dignity is one of the
core values
-
in truth, the core value
-
of our society and,
indeed, of all societies . . . of the European family of
nations . . . which have embraced the principles of the
(European) Convention (on Human Rights)’, and further-
more, ‘The invocation of the dignity of the patient . . . is a
solemn affirmation of the law’s and of society’s recognition
of our humanity and of human dignity as something
fundamental.’
29
Dignity has been defined as ‘a state, quality or manner
worthy of esteem or respect; and (by extension) self-respect.
Dignity in care, therefore, means the kind of care, in any
setting, which supports and promotes, and does not
undermine, a person’s self-respect regardless of any
difference’.
3
By extrapolation, dignity can be regarded as
arising from a dynamic between a person’s own sense of
worth and the manner in which others treat them.
30
Adherence to the principle of dignity requires that each
person is treated as a human being with due consideration
given to their prevailing circumstances. By this criterion the
person’s level of consciousness is immaterial and the
principle of dignity must be upheld even after death, for
example, by having proper procedures in place to regulate
the retention of human tissue after a post-mortem.
Clinical illustrations
Article 3 of the ECHR prohibits torture, or inhuman or
degrading treatment or punishment, and this might be seen
as only relevant to prisoners of war in combat conditions far
removed from healthcare settings. The European Court of
Human Rights has set a high threshold before particular
cases can be considered to violate Article 3 (e.g.
Herczegfalvy).
31
It is often said that European human
rights jurisprudence sets a floor and not a ceiling to
standards of care. By contrast, a human rights-based
approach aims to raise standards through a ‘bottom-up’
approach, which demonstrates that simply avoiding engage-
ment with Article 3 does not guarantee a good-enough level
of healthcare. In other words, to ensure that everyone is
treated with dignity, the approach of a good health service
or a worker in that service needs to be aimed at preserving
dignity, rather than retreating from whatever level of
indignity the law is prepared to tolerate. Poor care that
could potentially engage Article 3 issues can be represented
on a spectrum from physical abuse, excessive restraint and
neglect
32
to malnutrition and dehydration resulting from
(unintentionally) leaving meal trays out of reach of infirm,
bed-bound patients who cannot feed themselves. Character-
istics of organisations which permit abusive practice to
develop unchecked include geographical isolation and an
introspective culture, quantitative and qualitative staffing
difficulties, a lack of training and supervision, and weak
organisational and local leadership.
33
In clinical settings, dignity issues can be subdivided
into those concerning primarily the person and matters
relevant to the environment the person is in. In the former
category, affronts to dignity could result from referring to
the person only by their diagnosis; by neglecting their
appearance or state of dress, for example leaving them in
soiled clothing or bed linen; or adopting an overly
paternalistic or ‘infantilising ’ approach to adults because
of actual or assumed incapacity.
Environmental shortcomings can also have an impact
on a person’s dignity. Threats to dignity can range from
having a lack of privacy in mixed-gender wards to having to
live in impoverished, unclean or even dangerous environ-
ments. Conditions of privacy, whether it is while attending
to toileting and personal care or during family visits or
clinical consultations, may be jeopardised in settings where
a greater priority is afforded to organisational efficiency
than to individual care. The Joint Committee on Human
Rights noted that over a fifth of care homes in England were
failing to meet national minimum standards for privacy and
dignity.
34
Such failures may amount to violations of the
right to respect for private and family life under Article 8 of
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Curtice & Exworthy FREDA: a human rights-based approach to healthcare
153
the ECHR. ‘Benchmarks’ to promote dignity and privacy in
person-centred clinical practice have been promulgated
through the Department of Health ‘Essence of Care’
campaign.
35
Autonomy
Autonomy is regarded as one of the four fundamental
ethical principles of healthcare.
36
It is the principle of self-
determination whereby a person is allowed to make free
choices about what happens to them, that is, the freedom to
act and the freedom to decide, based on clear, sufficient and
relevant information and opportunities to participate in the
decision-making.
Medical case law has consistently upheld the primacy
of the choice of a person with capacity to make decisions
regarding treatment.
37
This principle is now embedded in
statute in the Mental Capacity Act 2005 (the starting point
being the rebuttable presumption that a patient has
capacity); the principle of autonomy is also implicit in
several of the rights of the ECHR. There have been legal
challenges to the Mental Health Act’s recognition that
refusal of mental health treatment by a detained patient
with capacity can be overridden (see R (on the application of
Wilkinson)
38
and R (on the application of B)
39
). Some
commentators have gone further and advocated capacity-
based mental health legislation.
40,41
However, to date,
although the domestic courts have given some ground,
they have not regarded this provision as violating the
ECHR. Indeed, existing European jurisprudence, with its
reliance on ‘therapeutic necessity’ (e.g. Herczegfalvy v.
Austria,
31
treatment demonstrated to be a ‘therapeutic
necessity’ is unlikely to breach Article 3), would seem to
sanction the present position in the Mental Health Act.
In clinical practice it is well recognised that a person’s
capacity to make decisions may be absent or compromised
temporarily. The Mental Capacity Act 2005 has codified
earlier case law and now permits a person to stipulate, while
they have capacity, their future wishes regarding their
healthcare (as well as matters regarding their property and
affairs) in anticipation of a time when they will no longer
have capacity. Such advance decisions allow a person to
refuse certain treatments, including life-sustaining treat-
ment, and so are vehicles whereby a degree of autonomy can
survive the loss of capacity. Even in the absence of capacity,
healthcare professionals should strive to ensure the person
participates in the decision-making process as much as they
are able. The participation principle in the Mental Health
Act 1983 Code of Practice notes that ‘patients must be given
the opportunity to be involved, as far as is practicable in the
circumstances, in planning, developing and reviewing their
own treatment and care to help ensure that it is delivered in
a way that is as appropriate and effective for them as
possible’.
11
In the same vein, the Mental Capacity Act
2005 requires that a person, even if lacking in capacity,
is encouraged ‘so far as reasonably practicable . . . to
participate . . . as fully as possible in any act done for him
and any decision affecting him’ (Section 4).
Clinical implications
Protection from interference in private and family life is
afforded by Article 8 of the ECHR. This is a qualified right
meaning the state is permitted to limit the exercise of the
right if certain conditions are met. However, an overly
paternalistic style of care could also have impact on an
individual’s ability to exercise their choices. An investiga-
tion into services for people with intellectual disabilities
32
noted they were ‘generally ‘‘looked after’’ instead of being
supported to develop their skills. This limited their ability to
make informed choices and communicate their needs’.
Autonomy incorporates a sense of independence of
actions as well as having control over one’s choices and
wishes. With advancing years a degree of dependence on
others for assistance with daily activities may be common,
but a move to a care home may also be delayed by the
provision of extra support that enables the person to retain
sufficient independence to continue living in their own
home. This will, however, be accompanied by significant
resource implications. The provision of relevant information
and advocacy support is important in giving the person the
knowledge with which to make decisions and exercise
choice.
Such an ‘enabling culture’ should not cease once the
person is admitted to the care home. They should be
encouraged to continue to use their skills and develop new
experiences even after they have left their original home.
Conversely, some mental health patients may need
protracted periods of in-patient care which can also be
potentially de-skilling. A vital part of discharge planning is
attention to the rehabilitation of skills necessary for
community living. The ‘recovery model’ aims to personally
empower those experiencing mental ill health and to
promote optimal but realistic functioning.
42
Conclusions
It has been claimed that, despite the enactment of the
Human Rights Act, the general understanding of human
rights has not progressed from legal concepts into values
that could meaningfully inform the decision-making
processes within provider organisations or positively
enhance the experience of service users.
43,44
However, it
has also been found that ‘the term ‘‘human rights’’ had
mainly positive associations . . . but there is little under-
standing of the application of human rights/the (Human
Rights Act) to normal life (or) public service delivery’.
45
In
other words, although there is widespread uncertainty
about the role and the impact of the Human Rights Act,
there is also general agreement on the need for a human
rights-based ‘values’ system for contemporary society.
This paper set out to illustrate that although human
rights principles already underpin good healthcare, be it in
psychiatry or any other branch of medicine, to articulate
health service organisation and healthcare delivery in such
terms remains novel. Although the concept of a human
rights-based approach might be easier to comprehend than
the technical operation of the Human Rights Act, the
challenge still remains of rooting such principles into the
everyday working practices of frontline clinical staff or into
the decision-making processes of the boards of public and
private providers of healthcare. Such a challenge is
implicitly underpinned by the need for appropriate and
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Curtice & Exworthy FREDA: a human rights-based approach to healthcare
154
suitably resourced training to be made available to such
frontline staff and organisations as a whole.
27
The Joint Committee on Human Rights has been
critical of the government for its past failure of leadership in
actively promoting a human rights culture and called on the
Department of Health to ‘maintain the clear political
leadership that it has recently shown on the importance
of human rights in health and social care’.
34
The Expert
Committee on reform of the Mental Health Act argued the
guiding principles should be on the face of the new act, to
endow them with a prominence commensurate with their
importance.
40
The government were never in favour of such
a stance and the guiding principles for the Mental Health
Act are now to be found in the Code of Practice.
11
The
consultation on a Constitution for the NHS
46
offered an
opportunity to ‘publicly champion an understanding of how
the recognition of human rights principles can underpin a
transformation of health and social care services’. However,
individual healthcare professionals, working in accordance
with their profession’s codes of practice, have the daily
opportunity to demonstrate human rights principles in
practice by offering healthcare that epitomises the values of
fairness, respect, equality, dignity and autonomy.
About the authors
Martin J. Curtice is Consultant in Old Age Psychiatry at Hollyhill Unit,
Rubery, Birmingham, and Tim Exworthy is Consultant Forensic Psychiatrist
at Memorial Hospital, Oxleas NHS Foundation Trust, London.
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... Human rights are rights that all people should enjoy such as the right to liberty and security; the right to respect for private and family life; and the freedom of thought, conscience, and religion. It can be useful to consider human rights in the context of principles or the core values of fairness, respect, equality, dignity, and autonomy (FREDA) [11]. Applying these principles underpins the fundamentals of good care by promoting a person-centred, safe, and quality service [12]. ...
... As such, this legal footing gives weight to its application in health and social care. However, it has been reported that there is a lack of understanding of how to apply a HRBA to everyday practice [11]. A lack of understanding may be due to limited evidence on how to apply a HRBA in practice in health and social care settings. ...
... All of these concepts are interdependent and in many instances overlap, but they set out the actions that homecare services can take to uphold human rights. Weight given to each concept is dependent on the situation under consideration, and hence, a greater weight is given to some human rights values over another, based on the best outcome for an individual [11]. Other concepts such as consent and empowerment were not retrieved from the literature. ...
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Providing formal care and support in the home has many benefits. Applying a human rights-based approach places the person and their human rights at the centre of all that a health and social care service does. There is a paucity of evidence on how to apply a human rights-based approach in practice when providing homecare. Increasing knowledge and understanding of human rights will empower health and social care practitioners to protect and promote human rights in formal homecare. The aim of this narrative review was to identify and describe human rights-based approaches in homecare, in order to promote awareness and understanding of a human rights-based approach. Five bibliographic databases were searched. Primary research studies pertaining to the delivery of formal homecare that included a human rights-based approach were eligible for inclusion. Sixteen articles were identified for inclusion. Quality appraisal and data extraction were conducted on included studies. A deductive framework analysis was used and concepts of a human rights-based approach that emerged from the literature as relevant to homecare were as follows: dignity and respect, autonomy, equality, participation, and communication. We found that homecare planning and delivery requires the integration of human rights, using approaches, such as person-centred care, partnerships in decision-making, supporting independence, and acknowledging a person’s beliefs and cultures, in everyday practice. Findings from this review can support and enable service providers to apply human rights in everyday practice, ultimately for the benefit of people using homecare services.
... They are not only discriminated against but also subject to emotional, physical and sexual abuse in mental health facilities as well as in the community. 4,5 In addition, poor quality of care due to a lack of qualified health and mental health professionals and dilapidated mental health facilities can lead to further violations 6,7 . ...
... In the USA 31% of people are affected by mental ill health but 67% of them do not receive any treatment, 6 and approximately 40%-50% of people with schizophrenia do not receive any treatment in a given year. 7,8 Europe is no better; 27% of people in Europe suffer from mental ill health and 74% receive no treatment. 9 This rises to approximately 90% of people in Nigeria and China. ...
... 101 As doctors rooted in human values, our responsibilities extend beyond clinical care to advocating for justice, human rights, and the well-being of vulnerable populations. [102][103][104] In the context of the ongoing genocide in Gaza, it is imperative to use our scholarly skills to highlight the humanitarian crises faced by the Gazan population within the historical framework of settler colonialism. 93 Our objective must go beyond merely documenting these atrocities; we must also urgently advocate for actions to alleviate suffering and uphold the dignity and rights of the Palestinian people, fulfilling our ethical duty to promote health, equity, and justice on a global scale. ...
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Background: The 2023-2024 Gaza Genocide has generated notable scholarly discourse, influenced by various historical, political, and social contexts. These academic writings, rooted in the longstanding "war of words," illustrate how language serves as a potent weapon in conflicts. The present study aimed to analyze the academic response to the 2023-2024 War on Gaza, focusing on the different perspectives, opinions, and lexical choices in scholarly articles. Methods: A scoping review and bibliometric analysis were conducted on articles from PubMed, pertaining to the 2023-2024 War on Gaza, spanning from October 7, 2023, to October 7, 2024. PRISMA-ScR guidelines were used. Individual relevant papers’ data were systematically extracted using a pre-tested form. Articles were categorized based on their stances as pro-Gaza, pro-Israel, or Neutral. Statistical analyses compared the bibliometric data of pro-Gaza and pro-Israel papers, identifying significant associated lexical fields. Factors explaining the different stances were uncovered. Results: Out of 640 articles identified, 221 were included in the review. Among these, 126 (57%), pro-Gaza, 70 (31.7%), pro-Israel, and 25 (11.3%), Neutral. Pro-Gaza papers, often published in high-ranked journals with global affiliations, focused on humanitarian issues, called for a ceasefire and decried the genocide. Conversly, pro-Israel papers, often from local journals and affiliated with Israeli institutions, focused on political and psychosocial aspects, emphasizing self-defense narratives. Terms independently associated with pro-Gaza positions included “Gaza” in the title, “occupation,” “genocide,” “punishment,” and “ceasefire.” Pro-Israel papers featured “Israel” in the title, references to “October 7,” and mentions of “Hamas.” Conclusion: This study highlights that academic narratives are profoundly influenced by historical contexts, media portrayal, official discourses, and the authors' socio-political environments. These findings underscore the intricate connection between scholarly discourse and the broader context of chronic occupation, revealing significant limitations in current global health strategies and highlighting the need to integrate humanitarian crises into these frameworks.
... Cognisant of the fact that modern nursing practice is often delivered in a variety of settings, interdependent of disability service provision, nurses need to ensure that each person is offered equal health-care access (Mafuba, 2023). Nursing principles can be further supported by the FREDA Principles (Fairness, Respect, Equality, Dignity and Autonomy) (Curtice and Exworthy, 2010), which provide a framework for all nurses for ensuring that all individuals with intellectual disabilities receive care that upholds their human rights. ...
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Purpose People with intellectual disabilities are high users of acute hospital care. Given their varied and often complex health-care needs, they often experience health inequalities and inequities, contributing to poorer health outcomes. As nurses are the largest health-care workforce with a patient-facing role, they have an important responsibility in meeting this populations health needs. The purpose of this paper is to explore key issues relating to the role nurses play in providing equitable health care for people with intellectual disabilities. Design/methodology/approach This service feature draws upon relevant literature to examine key contextual issues highlighting the importance of nurses in providing equitable health care for people with intellectual disabilities. Findings The findings from this service feature highlight the importance of nurses taking a leadership role in advocating for, and actively supporting the health needs of people with intellectual disabilities. Nurses’ leadership role, along with implementing reasonable adjustments, should be underpinned by education and training relating to the bespoke health needs of people with intellectual disabilities. This should help nurses promote the health and well-being of this population. Originality/value Addressing this populations health needs is a collective responsibility of all nurses. There are many examples of how nurses can be supported through policy, education, training and advocacy and this needs to be considered by key stakeholders and addressed as a matter of priority.
... A rights-based approach to delivering care and support for people with disability and older persons ensures that their human rights are protected and supported while availing of health care and social care. 5 Residential care facilities (RCFs) provide health care and social care in the form of accommodation, nursing, and supportive services to people who cannot live independently. In Ireland, RCFs can encompass nursing homes, supportive care facilities, residential homes, rehabilitation centers, and palliative care centers, among other facilities. ...
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Managing residential care facilities (RCFs) includes the ability to manage adverse events while maintaining a human rights-based approach to care and support. Literature investigating rights-based approaches in RCFs is scarce; therefore, an investigation of the current approach in RCFs will inform improvements. This study sought to identify whether RCFs in Ireland upheld a rights-based approach during the course of adverse events by analyzing notifications of adverse events from 2021 taken from the Database of Statutory Notifications from Social Care in Ireland. Data analysis was conducted independently by two researchers. Notifications of adverse events were coded according to whether the human rights principles of fairness, respect, equality, dignity, and autonomy were upheld or violated during the adverse event and its subsequent management. There was some evidence of violations, including staff violations during adverse events and their management, as well as residents violating fellow residents' autonomy, respect, and dignity in notifications of "serious injury" and "allegations of abuse." However, overall, good practice was identified, with residents' human rights upheld by staff. Our findings indicate that a rights-based approach to care and support is being upheld during adverse events and their management, which may indicate that such an approach to care and support has been adopted Niall McGrane, PhD, is a regulatory researcher at
... These mental health care services in detention centers must be provided from a human rights-based approach, ensuring that the human rights of immigrants receiving services are protected, promoted, and supported by staff [56]. The FREDA principles focus specifically on five human rights that need to be promoted: (a) fairness (e.g., detainees have the right to receive information in a format they can understand), (b) respect (e.g., detainees have the right to feel valued by the staff), (c) equality (e.g., detainees have the right not to be discriminated against because of their characteristics), (d) dignity (e.g., detainees have the right to be treated as human beings), and (e) autonomy (e.g., detainees have the right to live according to personal values, beliefs, and preferences) [56,57]. ...
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The increase in migratory flows worldwide has led to the creation of detention centers as a form of control of irregular migration. Recipient countries are responsible for protecting detainees’ right to mental health, but the literature suggests that immigration detention centers are environments associated with complex mental health needs among the detainees. This study aims to approach the mental health of people detained in the immigration detention centers in Spain, a southern border of Europe. Eighty-seven migrants coming from different Latin American and African countries were interviewed using an adaptation of the Measure of Quality of Life in Detention (MQLD; Bosworth & Gerlach, 2020) to measure the perceived detention environment and The Hopkins Symptom Checklist-25 (HSCL-25; Derogatis et al., 1974) to assess mental health. The results show a high prevalence of detainees with significant levels of anxiety and depression (69%) and attempts at self-harm within the detention centers (19.5%). A more positive perception of the detention environment—especially concerning institutional decency and the relationship with officers—is related to a lower degree of negative mental health symptoms. Finally, people detained for more than 2 weeks assess the detention environment more negatively than those detained for less time. Scientific contributions and social implications to ensure the mental health of detainees from a human rights-based approach are discussed.
... Autonomy involves being able to live one's life without undue imposition and in accord with one's beliefs, values and preferences (Christman, 2020). It underpins multiple rights in the Human Rights Act (1998) including to life (Article 2), liberty and security (Article 5) and a private and family life (Article 8) (Samanta and Samanta, 2005), and is one of the FREDA principles (alongside fairness, respect, equality and dignity) that summarise key values from the Act for UK-based health and care practitioners (Curtice and Exworthy, 2010). Autonomy is also the foremost principle, alongside beneficence, non-maleficence and justice, in the main framework of bioethics used within Western health and care systems (Beauchamp and Childress, 2001). ...
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Care home residents were vulnerable to severe effects from Covid-19 infection and experienced high mortality, especially early in the pandemic. In response, many countries introduced visiting restrictions to limit transmission. These often proved extensive and prolonged, drawing fresh attention to issues of autonomy and human rights in long-term care. We conducted in-depth interviews with 27 family carers in England with relatives living in a care home during the pandemic. Adopting a relational autonomy lens, conceptualised using the capability approach, we examined how family carers considered their relatives’ capabilities to have been impacted by visiting restrictions and how relational support could be strengthened. Family carers were concerned for their relative’s fundamental capabilities, including physical health, emotional well-being, and feeling connected to significant others. Capability deprivations were associated with family separation, ‘adapted’ visits that were inappropriate for their relative’s needs, and lack of opportunity for family carers’ to provide emotional support, help staff identify their relative’s emotional and physical needs, monitor care standards or advocate for their relative. Optimising relational support during a public health emergency requires effective collaboration between care homes and family carers. Specific measures include (1) ensuring there is clarity, a sense of shared purpose, clear accountability and confidence in visiting restrictions, (2) providing family carers regular, personalised updates about their relative using a range of digital communication tools, (3) allowing choice about visiting arrangements where possible, and ensuring visits are appropriate for residents with dementia and (4) ensuring that family carers feel welcomed, involved and enabled to resume in-person visits at the earliest opportunity. Consultation with care homes, families and residents, and workforce and digital readiness should be prioritised.
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Background Globally, there are 55 million people living with dementia (PLWD). PLWD have an uncertain prognosis. Most are approaching the end of life but are not overtly or immediately dying. Contemporary approaches to dementia care therefore promote the need to live and die well with dementia. Pain is highly prevalent but difficult to manage in PLWD. Originating in palliative care, “total pain” conceives of pain holistically, incorporating biological, psychological, social and spiritual elements. Pain management in dementia care tends to be pharmacologically focused. Total pain therefore offers an alternative approach—one consistent with person-centred philosophy underpinning contemporary dementia care. Due to important differences, concepts cannot simply be extrapolated from cancer-related to dementia-related palliative care however. Dementia-specific approaches are needed and require exploration. Description and objective of the analysis The objective of this paper is to explore the meaning of total pain in the context of living and dying with dementia, and its utility and implications for person-centred dementia care. Using a palliative care framework and existing literature, we critically consider the bio-psycho-socio-spiritual impact of dementia, to explore how total pain might manifest and be experienced in this context. Findings and interpretation We highlight the complexity, nuance and socially contingent nature of the impact of living and dying with dementia. We challenge binary understandings of “continuity or loss” (e.g., of identity, relationships), and totalising “loss” discourses, demonstrating that more subtle, varied and hopeful outcomes are possible. The way that the impact of dementia is articulated and understood has implications for the experience and management of total pain. The deficit-orientation of “total pain ” paradoxically risks its perpetuation. A balanced understanding of dementia’s impact (acknowledging both continuity and loss, alternatives and socially constructed aspects) better reflects the realities of dementia and creates new possibilities for supportive care practices to improve pain management and quality of life. Conclusion and implications for practice Applied to dementia care, “total pain” should be located within a critical context, emphasising complexity, contingency and nuance. The holistic focus of “ total pain” should be extended to incorporate balanced consideration of “painful” and “functional” experience. We introduce a balanced model of total pain incorporating a dual focus on “pain” and “personhood” within a critical context, to facilitate translation to practice. There is a need to develop evidence-based supportive interventions in each domain of total pain, to support a balanced approach to total pain management in dementia care.
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This chapter introduces the New Haven School of Jurisprudence as a methodological framework for understanding law, particularly in relation to social processes and values. It highlights the importance of making decisions that prioritize human dignity. The chapter lays out the eight values of the New Haven School—wealth, enlightenment, skill, well-being, affection, respect, rectitude, and power—that form the core of the analysis. These values serve as benchmarks for understanding the relationship between law, policy, and the social and economic rights essential for human development.
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This article examines the connection between human rights and elder abuse, employing a human rights-based approach. Through a critical examination of a fictional case study on elder abuse, the discussion highlights the vital role of nurses when safeguarding the rights of older individuals in residential care settings. The PANEL framework – encompassing Participation, Accountability, Non-discrimination, Empowerment and Legality – is a comprehensive guide for safeguarding practice and is applied to the example provided. By applying this human rights-based approach, nurses can proactively address elder abuse, ensuring individuals' rights are protected, promoted and supported. Through accountability measures, non-discriminatory practices, empowerment strategies and adherence to legal standards, the authors advocate for a holistic approach to enhance the quality of care and foster a safe environment for older adults.
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The Mental Health Act 1959 followed a groundbreaking Royal Commission and marked a transition from legalistic forms to paternalism. Mental health professionals were given wide latitude to act in the health interests of people with mental disorders. The Mental Health Act 1983 (MHA) curtailed some of
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Recovery' is usually taken as broadly equivalent to 'getting back to normal' or 'cure', and by these standards few people with severe mental illness recover. At the heart of the growing interest in recovery is a radical redefinition of what recovery means to those with severe mental health problems. Redefinition of recovery as a process of personal discovery, of how to live (and to live well) with enduring symptoms and vulnerabilities opens the possibility of recovery to all. The 'recovery movement' argues that this reconceptualisation is personally empowering, raising realistic hope for a better life alongside whatever remains of illness and vulnerability. This paper explores the background and defining features of the international recovery movement, its influence and impact on contemporary psychiatric practice, and steps towards developing recovery-based practice and services.
Article
The word dignity is used frequently in nursing and is deemed important to maintain or promote in patients Its meaning, however, remains unclear This paper uses the model of concept analysis described by Chinn and Kramer to further clarify the concept and develop the ideas of Mains A tentative definition and indicators are suggested to ascertain if dignity is present in a given interaction and context Dignity is found to be connected to the shared humanity of patient and nurse, whilst acknowledging the uniqueness of individuals It emerges through the analysis that, in order to effectively promote the dignity of patients, the nurse should also possess dignity
Article
The word dignity is used frequently in nursing and is deemed important to maintain or promote in patients. Its meaning, however, remains unclear. This paper uses the model of concept analysis described by Chinn and Kramer to further clarify the concept and develop the ideas of Mairis. A tentative definition and indicators are suggested to ascertain if dignity is present in a given interaction and context. Dignity is found to be connected to the shared humanity of patient and nurse, whilst acknowledging the uniqueness of individuals. It emerges through the analysis that, in order to effectively promote the dignity of patients, the nurse should also possess dignity.
Article
The aim of this study was to deepen understanding of the relationship between autonomy and integrity in interactions between patients and individual health care workers in real-life care situations. The data reported here are from a 6- and 12-month follow-up of the teaching of ethics to health care professionals working with older people. The data collection method used was participant observation. Health professionals' caring behaviour in everyday situations was observed from the point of view of patients' autonomy and integrity. Theoretical frameworks relating to autonomy and integrity were used to analyse the data. The structural framework was useful for identifying the two concepts and their relationship in everyday situations. The data suggest that the two concepts are ethically complex. Autonomy is grounded in respect for patients' ability to choose, decide and take responsibility for their own lives. Autonomy varies within and between individuals and is dependent on context and on those involved. It stresses the intrinsic value of patients, which marks their worth independently of others. Integrity, however, is bound to patients' very existence, no matter what their physical and mental conditions, and must be respected regardless of their ability to act autonomously. The concepts of autonomy and integrity appear to presuppose one another and to be indivisible if older adult patients' dignity is to be maintained. This implies that when patients' autonomy is supported their integrity is protected and, consequently, their dignity upheld.
Deaths in Custody Third Report of Session 2004-05. HL Paper 15-1, HC 137-1. TSO (The Stationery Office)
House of Lords and House of Commons Joint Committee on Human Rights. Deaths in Custody. Third Report of Session 2004-05. HL Paper 15-1, HC 137-1. TSO (The Stationery Office), 2004.
  • Tl Beauchamp
  • Jf Childress
Beauchamp TL, Childress JF. Principles of Biomedical Ethics (5th edn). Oxford University Press, 2001.
Patient: Sterilisation) [1990] 2 AC 1; Re T (Adult: Refusal of Treatment) [1993] Fam. 95; Re MB (Medical Treatment)
  • F Re
Re F (Mental Patient: Sterilisation) [1990] 2 AC 1; Re T (Adult: Refusal of Treatment) [1993] Fam. 95; Re MB (Medical Treatment) [1997] 2 FLR 426. SPECIAL ARTICLES