7. HEALTH
CARE
7.1 Supervision of health care organisations and human rights
We have discussed in section three above, the
problems experienced in mainstreaming human rights in the DoH
and core agencies such as the NHS Litigation Authority and Commission
for Health Improvement. These problems have had an undoubted impact
on the manner in which health organisations first addressed and
have since largely failed to come to terms with the implications
of the HRA. The DoH guidance (HSC2000/25), issued in July 2000,
established no system or mechanisms for health organisations to
address the implications of the HRA and no arrangements were made
to monitor what progress was made in this regard. Without such
steps and any reinforcement of the message, the department's guidance
has not had a major impact on health organisations. At this time,
given the scale of the NHS change agenda and the many competing
demands on the time of busy NHS executives, implementing the HRA
carries a very low priority in most health organisations. 16
Since October 2002, health organisations (hospital
and primary care trusts) have been supervised by strategic health
authorities reporting in turn to regional directorates in the
DoH. Human rights have no place in this structure. The performance
management frameworks used by the strategic health authorities
to oversee hospital and primary care trusts include racial equality
indicators but not human rights indicators (and there are no plans
to add the latter). At the strategic level, there is a marked
difference to be found in the treatment of human rights and race
equality matters. For example, in London, a dedicated Race Equality
Group formed by the five London strategic health authorities reports
to the relevant directorate of the DoH and is actively engaged
in appraising the quality of the race equality schemes prepared
by London health organisations. Each trust has been given a one
page assessment of the steps to be taken to implement its race
equality scheme and progress will be monitored through the performance
management framework. Further, all committee and board papers
are now required to have a specific section addressing racial
equality implications. By comparison, human rights are not covered
by the performance management framework, there is no dedicated
"human rights" group, no requirement to report progress
in this area and no requirement to address human rights implications
in committee and board papers. The influence of human rights on
the work of health organisations is correspondingly small.
7.2 Health care organisations and the Human Rights Act
We have already noted how, during the course
of 2001, District Audit surveyed how some 88 local government
and health organisations were implementing the Human Rights Act.
The size of the health sample is not known but the findings published
in May 2002 revealed that:
— 52 per cent of health bodies had
gone to considerable lengths while 42 per cent had taken no action
to raise awareness of the implications of the HRA for their work;
— 65 per cent had no clear corporate
approach to responding to the HRA;
— 61 per cent had taken no action to
assess policies and practices for compliance with the HRA; and
— only 29 per cent of health bodies
had put in place a mechanism for keeping abreast of developments
concerning human rights.
District Audit observed:
"Overall we found that health bodies are
not as well prepared as local government. Existing trusts are
leaving themselves vulnerable to risk and new Primary care trusts
have to meet the challenge of establishing policies and procedures
that are compliant." 17
In September 2001, the Constitution Unit, University
College London conducted a straw poll of some 34 health organisations
in England and Wales (not all still in existence) to try to establish
what information needs they might have in regard to human rights
and the Human Rights Act.
It proved very difficult to engage with the
bodies contacted given their work pressures, other prevailing
priorities and the major restructuring exercise underway within
the health service. Few of these bodies had an identified contact
point for human rights matters. Requests put to the Board Administrator/Trust
Secretary (or equivalent) who screened business for the Board
of Directors normally led to a referral to the Human Resources
Director or Training Manager. Human rights were not an issue on
which to win the attention of such busy people. The handful that
could be contacted disclosed little knowledge of the Human Rights
Act and human rights matters.
Of 10 health authorities approached, five responded.
All five had included the introduction of the HRA as an item at
least one board meeting with a supporting briefing paper. Two
had obtained information from legal practitioners off the internet.
Two had conducted and one planned to offer training on the HRA
by their legal teams. Three had hosted seminars delivered by a
commercial law firm. Of the nine Primary Care trusts approached,
five had received human rights training (provided by outside legal
practitioners). Only one was interested in taking this work further.
Training on human rights matters, where held, was mainly restricted
to board and senior management and rarely extended to front line
staff. Of 15 acute Trusts, eight had little or no knowledge of
the HRA. Outside law firms had conducted seminars for some of
the other seven trusts.
Health organisations are included among the
40-50 bodies being examined as part the District Audit's latest
cycle of human rights audits. A key feature of these "Human
Rights Management Arrangements Diagnostic's" is the conduct
of interviews with members of staff as well as a survey of staff
across the organisation. This audit process is confidential but
aggregated results will be published later this year. Among the
good practice examples identified have been health organisations
which have Board approved and costed action plans and timetables
for reviewing policies and procedures together with the commissioning
human rights training and newsletters. Some good practice organisations
have also used the need to prepare for the Race Relations (Amendment)
Act as an opportunity to review personnel policies and practices
for compliance with the HRA. Some have undertaken assessments
to identify contracts where there is a risk of legal challenge
and then introduced clauses into these contracts setting out the
contractor's obligations to comply with the HRA. But there are
also health organisations (and perhaps the majority) where little
has or is being done to implement the HRA. In these organisations,
the implications of the HRA have still not been addressed as a
governance issue, policies and practices have not been audited
for compliance with the Act, there is no corporate "human
rights" policy and no designated "human rights"
official. No arrangements exist for obtaining up to date information
on human rights issues or case law. No arrangements are in place
for ensuring that external contractors comply with the HRA. Levels
of awareness among staff of the implications of the HRA remain
low and training, where provided, has been conducted on an ad
hoc manner with no recent reinforcement. In these organisations,
response rates as low as 3 per cent have been recorded for health
care staff who consider that they have received adequate information
on the HRA. More positively, however, the audit process for these
organisations also reveals high levels of awareness among clinical
staff concerning specific human rights issues (such as the right
to life and avoiding degrading treatment) where such implications
have been taken on board in clinical guidance and practice (provided
by the relevant professional bodies such as the BMA and GMC).
It would seem that in the health care sector,
therefore, evidence of best practice and compliance with the HRA
is not to be found in organisational practice but in the clinical
practice of health care professionals. It may also be observed,
that while health care lawyers are undoubtedly aware of their
organisations' obligations to comply with the HRA they do not
appear to exercise a formal institutional role in this regard
as seen in local government. In local government, the legal section/department
is invariably the recognised home for human rights. This is not
apparently the case in health organisations.
What has not been found in either organisational
or clinical practice is a clear sense of a human rights culture
or approach for the provision of health care. However, there is
a strong ethical basis to the provision of health care and evidence
of human rights being a facet of patient care and medical ethics.
7.3 Clinical Guidance and Human Rights
Health care involves many sensitive issues of
an ethical and human rights nature. For example, the "right
to life" established under Article 2 of the ECHR figured
prominently in early court decisions under the Human Rights Act
concerning the provision or withholding of life prolonging treatment.
It also became an important part of the long running debate over
when the use of "do not resuscitate" notices was appropriate
and what steps should be taken to involve patients and close relatives
in such decisions.
The provision of guidance on such matters requires
a deep understanding of the clinical issues. This has long been
a function of the professional medical bodies. They have taken
care to address the implications of the Human Rights Act in the
guidance they provide on these issues. For example, in January
2002, the British Medical Association, the Resuscitation Council
(UK) and the Royal College of Nursing issued a joint statement
on "Decisions relating to cardiopulmonary resuscitation"
which expressly covered the impact of Convention rights on such
decisions. The BMA has also:
— produced a general guide on the "Impact
of the Human Rights Act 1998 on medical decision taking"
in October 2000;
— revised its guide on "Withholding
and withdrawing life-prolonging medical treatment: guidance for
decision making" (2001) to take account of the HRA; and
— considered the impact of the HRA
in the report and toolkit prepared by its Consent Working Group.
18
BMA guidance is distributed to all health organisations.
The General Medical Council is another body
which has produced guidance on "Withholding and withdrawing
life-prolonging treatments: Good Practice in decision making"
(August 2002) which considers the implications of the HRA and
ECHR. 19
These are known sources of information for health
care professionals and clearly one of the most effective methods
(together with high profile litigation) of establishing a human
rights dimension on such issues within the health care sector.
This does not mean that policies and practices
on the provision and withholding of life prolonging treatment
in every hospital now comply with the HRA and ECHR. Apart from
the work of District Audit, the Disability Rights Commission has
identified cause for concern over the apparent use of "Do
Not Resuscitate" notices for some disabled people receiving
hospital treatment without the knowledge of the patient or their
close relatives. The Commission has also examined the results
of clinical governance reviews undertaken by the Commission for
Health Improvement for a sample of 19 NHS hospital trusts. These
reviews revealed that three trusts had a policy on DNR, three
trusts were reviewing or planned to review their policy, three
trusts had detailed policy and practice guidelines and reports
on the other ten disclosed concerns, some serious. Having guidance
in place was not a guarantee that this would be acted upon by
staff. According to the DRC, a resuscitation audit in two hospitals
found that correct documentation of DNR status existed for only
23 per cent of patients and for only 10 per cent of those identified
as "Not for CPR". A survey by students at one hospital
found that just over half its doctors had read the Trust's guidelines.
20
In such an environment, the possibility of Convention
related challenges on the provision or withholding of life prolonging
treatment must remain high. The DRC also intends to conduct a
formal inquiry into resuscitation practices as applied to disabled
people.
7.4 Human rights guidance
Health trust administrators, when contacted
by the Constitution Unit, were looking for an easy to read guide
to the Convention articles most likely to affect health services
which could be used as a briefing paper for Board officials and
as a briefing tool for senior management to inform their staff.
They wanted it to focus on current concerns of the health care
sector (eg rationing of care) and to be able to be updated and
linked to other sources. Primary care trusts sought a similar
briefing paper but with more of a focus on the implications of
the HRA for the commissioning of health services (contracts and
service delivery agreements). As many NHS staff did not have easy
access to the internet in the workplace, the information needed
to be available in printed form.
Human rights guidance for the health care sector
is available. Apart from the brief introduction provided by the
DoH and the on line service promised by the NHS Litigation Authority,
human rights implications have been covered in a number of medical
books, journals and websites. The clinical guidance provided by
the BMA and GMC offers some of the best examples of human rights
considerations being applied to core functions to be found in
any area of public activity. More general guidance has also been
provided for nurses by the Royal College of Nursing. In addition
to the many expensive case review services aimed mainly at lawyers,
some more modestly priced subscription services also exist which
offer practical guidance on human rights matters for health and
social care providers. 21 Commercial law firms specialising in
health litigation, such as Capsticks, have been particularly active.
Since 2000, Capsticks (the main source of legal advice for health
organisations in the south of England) has conducted seminars
for around 100 health organisations who were regular users of
their services. Most of these seminars were for Board members
except in mental health services where front line doctors and
nurses also attended. Capsticks also maintains a website—including
a section entitled "NHS Online" which provides guidance
on litigation issues and covers human rights matters.
It is noticeable that most of the above guidance
is directed at the individual health care practitioner and that
there is not the same attention given to meeting human rights
obligations on an institutional basis as found in other areas
of public activity. There appears to be no "toolkit"
on the market advising health care organisations how to comply
with the HRA. This might be both a cause and effect of the failure
to address human rights at the organisational level in the health
care field.
7.5 A Human Rights Commission and health care
A Human Rights Commission could not by itself
cause the health care sector to address its human rights obligations.
Flaws in the mainstreaming process, for example, have to be resolved
by internal action within the DoH. As an external force, however,
a HRC could press for institutional reforms to revive mainstreaming
and to have human rights indicators included in the strategic
health authorities' performance management frameworks for health
organisations. Such steps would help to gain a recognised status
for human rights in the health care sector which will not develop
under the present arrangements.
A Human Rights Commission would not have the
means and resources to work directly with individual health trusts.
However, the experience of the other equality commissions suggests
that a Human Rights Commission could work effectively with and
through the DoH and existing regulatory bodies such as District
Audit and the Commission for Health Improvement. The CRE, for
example, has co-operated in a successful manner with the department
over the introduction of the race equality schemes with two departmental
officials seconded to the commission to prepare guidance for the
health care sector. The CRE has also prevailed upon the CHI to
address race equality issues as part of its clinical governance
reviews in order to meet the CHI's obligations under the Race
Relations (Amendment) Act. For the current review exercise covering
Primary Care Trusts, some 20 per cent of these trusts are being
asked by the CHI for evidence of the steps they are taking to
implement their race equality schemes. There are no plans or pressure
to introduce similar steps for human rights. This is a reflection
of a fundamental difference in the way in which health organisations
and professionals grasp human rights and race equality matters.
There is a much stronger understanding of the need to tackle racial
discrimination in the health care sector which has been translated
into action in policy development, decision making and service
delivery. To an extent this is simply because health care professionals
and organisations have more understanding and experience of race
equality matters. Race discrimination is an issue they can identify
with and see the need to tackle. However, this realisation also
extends from the manner in which race equality issues have been
brought before the health care sector. The existence of an external
driving force in the form of the CRE with a specific mandate and
the tools (race equality scheme) to pursue the racial equality
agenda makes a marked difference. By comparison, human rights
are new, poorly understood, have no focal point and no driving
force. No existing agency working within the health care sector
shows any prospect of picking up this mantle. Only a human rights
commission would be likely to address these gaps.
A human rights commission would not appear to
need to fill any significant holes in the provision of guidance
concerning the application of the HRA to health care matters.
Its knowledge base on health aspects would be very unlikely to
exceed that of the BMA and GMC. There would be benefits, however,
to be gained from a HRC acting as a repository and signpost for
what, at present, are widely scattered sources of information.
It might also address questions of organisational best practice.
A human rights commission with teeth could emulate
the Disability Rights Commission in conducting inquiries into
areas of concern within the health care sector (including areas
of concern already identified by the JCHR such as mental health).
It would have a potential role in litigation—something welcomed
by one commercial law firm working with health organisations if
this would also provide a filtering mechanism eliminating time
and expense on cases and human rights arguments that had no prospect
of success.
Above all, a human rights commission could take
on the task of convincing a busy and stressed health care sector
that human rights were important and something to be embraced
in every area of activity.
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