The
information here applies to England
and Wales.
Different laws and guidelines may apply in Scotland
and Northern Ireland.
There are many reasons why a person might be reluctant to
have a test or treatment for HIV. An individual may simply feel they are not at
risk. A positive diagnosis can affect personal relationships, have financial
implications or can lead to discrimination and isolation. Some people with HIV
or AIDS decide not to start or to carry on with treatment. In clinical studies,
people refusing to have antiretroviral treatment (ART) have cited various
factors: quality of life, side-effects, the risk of developing resistance to
the drugs, believing they do not need ART or having a preference for complementary
and alternative medicine.1,2
Under common law, a competent adult has the right to refuse
medical testing or treatment for any reason – or for no reason at all. This right to individual autonomy is well
established, even in cases where medical experts believe treatment has clear or
lifesaving benefits.3
Autonomy, privacy (including the right to physical
integrity) and protection against physical abuse are also human rights protected
under treaties such as the International Covenant on Civil and Political Rights (ICCPR) and the European Convention on
Human Rights (ECHR). Freedom of religion is another human right that can come
into play for some people when they make choices about medical treatment (such
as a Jehovah's Witness refusing blood transfusions). In terms of domestic law, these freedoms
are protected under the Human Rights Act
1998 as well as through pre-existing common law.4
In theory, a health professional carrying out tests or
treatment without consent could face a criminal charge of battery, although in
fact this is unlikely. A civil claim for battery or of negligence, however,
could result.3
Obtaining
informed consent for any test or treatment is also a fundamental principle of
medical ethics and good practice. Guidance from the General Medical Council5 advises doctors to discuss treatment options in understandable terms and to
respect the individual’s right to make choices about their care. Seeking
informed consent should be seen as part of a decision-making process in which
doctor and patient are partners.
Is HIV/AIDS a special case?
In the past, testing for HIV was preceded by lengthy
counselling about the implications of a positive diagnosis or even the effect
of simply taking the test. Doctors took
extra care because, before the introduction of effective treatment, HIV was
usually a terminal diagnosis. There was more discrimination and fewer legal
protections than at present. Therefore, much emphasis was placed on gaining
explicit and thoroughly informed consent to perform the test.11,12
HIV clinicians now argue that HIV testing should be presented
as a routine procedure, to remove social barriers and stigma.12 The
latest clinical guidelines on HIV testing stress that obtaining consent for an
HIV test is well within the competence of any qualified health professional.8
Testing is becoming routine in many common clinical
situations:
- All pregnant women should be offered a test for HIV.13
- The test is also offered routinely to all patients attending
a sexual health or abortion clinic.8
- In areas of the country where HIV prevalence is relatively
high, it is recommended that the test should be offered to all adults when they
register with a GP or are admitted to hospital.8
At other times, healthcare
professionals will offer an HIV test if the individual’s social or clinical
picture suggests the person might be at risk. Some examples include men who
have sex with men, people whose partners are known to be HIV-positive, people
with tuberculosis, and people with unexplained weight loss.8
The rest of this chapter provides
information on consent to testing and treatment in more challenging scenarios,
including:
- Adults without full mental capacity.
- Pregnant women who refuse interventions.
- Children and young people under the age of 18.
The chapter ends with a list of
organisations that can provide more detailed information and advice.