Autonomy and the right to self-determination in
Table of Contents
- Introduction.
- Autonomy and Self-determination.
2.1. Autonomy as a single principle.
2.2. Autonomy as a right.
2.3. Autonomy as a quality.
2.4. Health Professions Council of South Africa
3.
Medical Paternalism.
3.1. For and Against Medical
Paternalism.
3.1.1. For Paternalism.
3.1.2. Against
Paternalism.
4.
South African Law: The Constitution, legislation and case law.
4.1. Overview.
4.1.1. The Constitution.
4.1.2. Legislation
governing consent.
4.1.3. Case Law
4.2. The Bill of Rights.
4.3. Ethical guidelines regarding
consent.
4.4. Legislation governing consent.
4.4.1. Who may give
informed consent?
4.4.2. Emergencies.
4.4.3. Statutory
authority.
4.4.4. Court Order.
5. Conclusion
6. Declaration
1.Introduction
In most medical ethics
literature an autonomous person is
said to be self-determining - to have
control of his or her destiny[1].
In this essay I will define and discuss autonomy and self-determination. Having
defined the terms I will then use all relevant laws and the Health Professions
Council of South Africa's General Ethical
Guidelines for Doctors, Dentists and Medical Scientists[2]
and Seeking Patients Informed
Consent: the Ethical Considerations[3] and discuss autonomy and self-determination
in health care practice in South
Africa
2.Autonomy and Self-Determination
Seedhouse contends
that the principle of autonomy has, as a matter of fact, always inspired health
work[4].
Illness or injury, for example a broken hand, is a physical impediment to
autonomy and also an obstacle to physical development. Medical interventions
seek not only to restore biological development but also to allow a person to
move on in life without obstacle or hindrance to the ability to act
autonomously. The whole point of humane treatment is to enable full persons to
flourish as much as possible. While being
just, not doing harm and doing positive good are all important to
health care’s primary inspiration, I would suggest that autonomy is the central
healthcare notion.
Under Western law
(and as will be shown later, South African law is no different), touching a
competent person for the purpose of a health care intervention requires consent
from the person and this consent must involve having sufficient knowledge to
understand the implications of what is proposed. Seedhouse identifies three
different ways of defining autonomy:
2.1. Autonomy
as a Single Principle
When autonomy is
seen as a single principle it is defined rather narrowly as follows:
“the wishes of
individuals ought to be respected,” or “patient control of decision-making.”
Seedhouse points out that practitioners who define autonomy in this way will
often separate patient welfare and patient autonomy and this then allows them
to ask “does autonomy apply in this case, or is it better than the doctor
decides?” This gives rise to paternalism, which I will discuss later.
2.2. Autonomy
as a Right
When viewed as a
right, autonomy is to declare that people capable of self-determination ought
not to be manipulated, even if others believe this is in their best interest.
While this is a satisfactory view of autonomy it is too simple because it
regards autonomy as a single type of a thing which you either have or do not
have.
2.3. Autonomy
as a Quality
Seedhouse sees
autonomy neither as a disembodied principle or a right partially separate from
human beings, but rather as an intrinsic personal quality: “to be autonomous is
to be able to do - to be able to do anything rather than nothing.”[5]
Thought of in this way autonomy is a matter of degree - the better the quality
of autonomy the more a person is able to do. A person becomes able to move more
extensively in his/her life as her/his level of autonomy rises.
This understanding
of autonomy makes it possible to create a clear distinction between creating autonomy and respecting autonomy and that respecting
autonomy goes much deeper than just agreeing to the wishes of others. In a
medical context respecting autonomy can come to mean no more than that the
practitioner is neutral and does not place undue influence on the recipient of
health care. Practitioners can come to believe that the main thing is to let
the patient make up her own mind and that it is not up to the practitioner to
tell the patient everything about his condition, believing that if he wants to
know he will ask. When autonomy is seen as a quality, a practitioner will
realise that a person's autonomy may not yet be of a quality that enables her
to make a reasoned choice. Seedhouse suggests that if doctors think respecting
autonomy merely means saying “over to you” whenever there are hard clinical
decisions to be taken, they have things badly wrong. Superficially, it may seem
as if a patient's right to exercise
the principle is respected if she is
left alone to decide to have a treatment or not. Certainly she will not be
under pressure to do what clinicians would like, but without advice, support
and education - and especially if she is upset and anxious - she may have
little or no autonomy to exercise.
It thus makes good
sense to see autonomy as the ability to
do, to see it as a quality which we all possess to some degree, and to see
it as a quality which can often be enhanced in a variety of ways. This makes it
possible to work for autonomy without always having to do what another person
requests. Seedhouse correctly suggests that creating
autonomy - enhancing the human quality of doing - is basic to health care.
2.4. Health
Professions Council of S.A.
The Health
Professions Council of South Africa (HPCSA) takes this broader view of autonomy
in its Ethical Guidelines booklets.
Acknowledging that the practitioner is in a position of power over a patient[6]
it goes on to warn against abusing this power and encourages the following[7]:
respect patients’ privacy and
dignity;
respect their opinion;
give them the information they ask for or need and do this in a way they can best understand;
do not withhold information that
would be in their best interest;
respect the right of patients to be fully involved in decisions about their treatment and care and
respect their right to refuse treatment.
In all these it is
clear that the HPCSA encourages the creation
of autonomy as well as the respecting
of autonomy.
A perusal of the
HPCSA booklet on informed consent[8]
reinforces the idea of creating autonomy by calling for effective communication
and the development of relationships of mutual trust and respecting patients’
autonomy even where a refusal may result in harm to themselves or in their own
death. It calls for the provision of sufficient information regarding their
specific condition and a recognition that the amount of information given to
each patient (even for the same condition) will be patient specific. The
guidelines regarding what information patients should be given before making a decision
regarding consent is extensive and concludes with a section calling on
practitioners to do their best to find out about patients’ individual needs and
priorities and a call to not make assumptions about patients’ views.
Practitioners are expected to respond honestly to any questions and to allow
sufficient time for patients to make a decision and then to abide by their
decisions.
3. Medical Paternalism.
Point 7 of Seeking Patients’ Informed Consent: The
Ethical Considerations states “It is for the patient, not the healthcare
practitioner, to determine what is in the patient's own best interests.” The
ultimate decision to undergo or refuse a medical intervention lies with the
patient and not with the practitioner. This applies even if the practitioner
regards a refusal by the patient’s consent to treatment as grossly unreasonable
and even if the patient's death might result. The practitioner cannot violate
the patient's autonomy on the basis of “the patient’s-best-interest” and “the
doctor knows best.” This practice on the part of practitioners is called
paternalism and is defined by Benatar[9]
as “taking actions or decisions on behalf of patients, if necessary without
their permission, sometimes even with coercion, and is justified by the
intention of serving their welfare.” He goes on to describe how paternalism has
its roots in the Hippocratic tradition and includes the implicit assumptions
that the doctor is benevolent and will only undertake actions not harmful to
the patient, that the doctor is qualified to act on behalf of the patient and
that explicit permission is not always necessary. The patient is considered to
have insufficient medical knowledge and if seriously ill could even have
diminished autonomy as a consequence of the physical, emotional and social
effects of disease.
3.1. For and
against Medical Paternalism
As will be seen
later when the relevant laws are discussed, in South Africa
3.1.1. For
Paternalism
Shinebourne and
Bush suggest that it may not be desirable or even possible to exclude
paternalism from medicine and that their support for paternalism is for some
but not all aspects of paternalism. They define paternalism as “behaving
towards someone as a father would towards his children, in other words with an
absolute duty to safeguard the welfare and health of his child, to act always
in the best interests of the child, to use his knowledge, skill and
understanding to secure those interests, to take responsibility for decisions
made and to be available to the best of his ability at all times when the child
needed him.” They suggest this attitude does not imply not respecting autonomy.
Using this definition they go on to suggest that paternalism is inevitable in
medicine because full information cannot possibly be given in every situation.
They ask “Can it seriously be argued that a middle-aged man with a cough should
be told that he probably has a post nasal drip but could have inoperable
cancer, tuberculosis or AIDS?”[13]
In arguing for a
degree of paternalism they stress that in the majority of consultations between
patients and doctors there is little place for paternalism, but that when
doctors have earned and gained trust (and not abused or assumed it) they have
no need to apologetically defend paternalism.
3.1.2. Against
Paternalism
Veatch defines
paternalism as behaviour that attempts to interfere with the autonomy of an
individual without his or her consent for the express purpose of benefiting
that individual. His understanding of autonomy is one which extends beyond
freedom of action to encompass the idea of self-determination in accordance
with a plan chosen by oneself. He acknowledges that for most of the 20th
century the practice of medicine was paternalistic but that two major moral
changes have rendered paternalism by physicians untenable and indefensible.
These changes are firstly, the development of rule consequentialism and
secondly, the deontological “right-making” principle of autonomy.
All the above points
to the fact that there is not uniformity of belief regarding autonomy. Benatar
goes so far as to suggest that “the concept of the patient as autonomous agent
is philosophically suspect.”[14]
Be that as it may, Dieter Giesen[15]
rightly points out that “today at least some legal systems clearly prefer the
patient's autonomy to medical paternalism. This view reflects the basic human
right to self-determination which, in a broader context, is acknowledged in
many parts of the world.” South
Africa South Africa South
Africa
4. South African Law: The Constitution, Legislation and Case Law.
4.1. Overview
Rebecca Cooke[16]
points out that it is a “legal recognition of only recent evolution that
treatment choices are not to be medically dictated, but are to be medically
informed personal choices made by patients as acts of self-determination.
Physicians are increasingly required by law to afford patients’ respect as
equals - capable of and responsible for making critical life decisions - by
providing them the medical information they need to fully exercise choice.”
4.1.1. The
Constitution
As a
constitutional democracy, residents in South Africa
The Constitution[17]is
the supreme law of the Republic. Carstens and Pearmain[18]
suggest that the Constitution in general, and the Bill of Rights in particular,
embody the spirit of the law, whilst
the letter of it is left to other
legislation and the common law. In discussing autonomy and self-determination
in healthcare practice I will look first of all at the Bill of Rights and in
particular at:
- Section 9 which protects the right to equality;
- Section 10 which protects the right to dignity;
- Section 11 which protects the right to life;
- Section 12 which protects the right to bodily integrity and not to be subjected to medical experimentation without informed consent;
- Section 14 which protects the right to privacy;
- Section 27 which guarantees the right to access healthcare, reproductive health and access to emergency medical treatment
- Section 28 which guarantees all children access to basic health care services.
4.1.2. Legislation Governing Consent.
Secondly, I will
look at current South African legislation governing consent, which includes:
- the National Health Act[19];
- the Mental Health Care Act[20];
- the Children’s Act [21];
- the Choice on Termination of Pregnancy Act[22];
- and the Sterilisation Act[23];
4.1.3. Case Law
Before moving to
the Bill of Rights and South African legislation, I will identify some specific
case law which is important in the area of autonomy and self-determination
namely:
- Castell v De Greef[24];
- Soobramoney v Minister of Health[25];
- Van Biljon v Minister of Correctional Services; B & Others
v Minister of Correctional Services & Others[26];
- Ministry of Health v Treatment Action Campaign[27];
Castell v De Greef is regarded
(according to Carstens and Pearmain[28])
as the locus classicus in the area of
informed consent. It introduced the doctrine of informed consent into South
African medical law; it ousted medical paternalism in favour of patient autonomy;
it treated lack of informed consent as an issue of assault and not of
negligence; and it established the yardstick of the ‘reasonable patient’ as the
test for informed consent and not that of the ‘reasonable doctor.’ Carstens and
Pearmain[29]
submit that the “principles pertaining to the application of the doctrine of
informed consent in South African medical law, as stated in Castell v De Greef are ultimately indicative of the correct
approach to be followed as it conforms with the fundamental right of individual
autonomy and self-determination.”
In Soobramoney a 41 year old man sought to
have renal dialysis provided to him at state expense, in the absence of which
he would die. He claimed that his right to life and his right to emergency
medical treatment were being denied. His request was declined for the reasons
that due to scarcity of resources, access to renal dialysis was rationed and he
did not meet the criteria for providing dialysis at state expense. Furthermore
the court gave a narrower meaning to emergency treatment in defining it as sudden catastrophe or unexpected trauma.
In Van Biljon four prisoners diagnosed as
HIV positive sort orders that they had the right to the provision, at state
expense, of adequate medical treatment. Two of the prisoners had already been
prescribed appropriate anti-retrovirals by medical practitioners but the other
two had not had any antiretroviral treatment prescribed by the state. The High
Court ruled that the two who had been on antiretroviral treatment were entitled
to continue at state expense, but the two who had not been on antiretroviral
treatment were not entitled to treatment. The ruling established that
individuals are not entitled to specific remedies unless the state has already
committed itself to the provision of specific benefits.
In Treatment Action Campaign the
applicants had challenged the decision of the government to confine the
dispensation of Nevirapine to 18 pilot sites (only two in each of South Africa
4.2. The Bill of Rights
In our
Constitution there is no express mention of a broad right to health. Section
27(1)(a) provides for a right to have access to health care services. In Constitutional Law of South Africa[32] David Bilchitz points out that this right
does not provide for the general resources necessary to preserve and maintain
health. In Soobramoney the Constitutional Court
The right to access health care services is not a
direct right to healthcare services, but rather a right of access. Carstens and Pearmain point out that it is not a right to
healthcare services per se[33].
It is a right to access and this
distinction thus allows for the possibility of payment for health care services
by those who can afford to do so. In the context of this essay, it is important
to note that the right to access emphasises the responsibility of the
individual for his or her own health status. A right that grants access implies
that the holder of the right must also make some kind of an effort in order to
obtain the services. Thus in the context of autonomy and self-determination in
the area of healthcare practice, the individual’s first exercise of autonomy
and self-determination is to decide to access health care services in the first
place.
As mentioned
above, although there is no direct right to health, there is a suite of rights
which, when viewed collectively could be said to constitute a right to health.
These rights are: the right to life[34];
the right to dignity[35];
the right to bodily and psychological integrity[36];
the right to privacy[37];
the right to an environment that is not harmful to health or well-being[38];
the right to emergency medical treatment and to access to health care services[39]
and the right to sufficient food and water and social security[40].
The following are a few points to note regarding autonomy and
self-determination in the above-mentioned rights:
- Life: As the case of Soobramoney[41] made clear, the right to life cannot be extended to encompass the right to indefinitely evade death, no matter how self-determined we are to stay alive.
- Dignity: When patients are so severely injured that they can no longer function as human beings, but remain biologically speaking alive, autonomy and self-determination still need to be respected.
- Bodily and psychological integrity: The right to bodily and psychological integrity implies that the person may not be forced to receive medical treatment against his or her will. Autonomy and self-determination guarantee the right to choose and refuse treatment and this right implies a right to give or refuse informed consent.
- Privacy: The physical examination of a person in a health care context is very much an invasion of privacy and such examination can only be lawfully conducted if that person waives the right to privacy for the purpose of the examination.
4.3. Ethical Guidelines regarding Consent
As mentioned
previously, the first autonomous, self-determining decision a person makes in
respect of health care is the decision to access
health care services. Once within the healthcare system, it is in the area of
informed consent that individuals primarily exercise autonomy and self-determination.
The HPCSA ethical
guidelines[42]
call on practitioners to respect a patient's privacy and dignity. Regarding
informed consent they require: “give your patients the information they ask for
or need about their condition, its treatment and prognosis. Give information to
your patients in the way that they can best understand it. Refrain from
withholding from your patients any information, investigation, treatment or
procedure you know would be in their best interest. Apply the principle of informed
consent as an ongoing process. Allow patients access to their medical records.”
These are all essential elements in ensuring autonomy and self determination.
Furthermore the
HPCSA guidelines state that “the South African courts have held that legally
for a proper informed consent the
patient must have: knowledge of the nature or extent of the harm or risk;
appreciated and understood the nature of the harm or risk; consented to the
harm or assumed the risk; and the consent must have been comprehensive.”[43]The
HPCSA further states that it is primarily the duty of the healthcare
practitioner to discuss with the patient and obtain from the patient the
informed consent[44].
The ethical guidelines further make clear that the healthcare practitioner must
inform patients of the legislative requirement of supplying ICD-10 codes to
medical aids and the inevitable loss of privacy which is a consequence of this
requirement[45].
They must obtain consent to release these codes to the medical aids, preferably
in writing, and this consent should constitute part of the informed consent.
4.4. Legislation Governing Consent
In discussing
legislation governing consent, I am primarily following the structure and
approach of Carstens and Pearmain, who in turn acknowledge that they follow the
“foundational writings of Strauss and Van Oosten which undoubtedly remain the
most important source references in this regard.”[46]
The purpose and
function of informed consent is to ensure the patient's right to
self-determination and freedom of choice and to encourage rational
decision-making by enabling the patient to come to an enlightened choice either
to undergo or refuse treatment. This calls for a patient centred approach which
was first described in Castell v De Greef.[47]
Part of this approach is to make patients aware of the diagnosis of their
condition. The National Health Act[48]
imposes a duty on doctors to inform patients of their health status and to then
acquire consent to treatment that is freely and voluntarily given.
4.4.1.Who may give
informed consent?
- Informed consent may be given by adults provided they are sane and sober. According to the Children’s Act[49], anyone over the age of 18 years is competent to give consent. Marriage bestows majority and a woman under 18 years who is legally married can give consent.
- Incapacitated patients, such as patients in a state of unconsciousness, intoxication, delirium, trance, shock or coma are incapable of giving consent.
- Section 7(1) of the National Health Act[50] provides for proxy or substituted consent to medical interventions by someone else on behalf of the patient who cannot consent:
“Subject to section 8, a health service may not be provided to a
user without the user’s informed consent, unless-
(a) the user is unable to give informed
consent and such consent is given by
A person-
(i) mandated by the user in writing to grant consent on his or her
behalf; or
(ii) authorised to give such consent in terms of any law or court
order;
(b) the user is unable
to give informed consent and no person is mandated or authorised to give such
consent, and the consent is given by the spouse or partner of the user or, in
the absence of such spouse or partner, a parent, grandparent, an adult child or
a brother or a sister of the user, in the specific order as listed;
(c) the provision of a health service without
informed consent is authorised in terms of any law or court order ;
(d) failure to treat
the user, or group of people which includes the user, will result in a serious
risk to public health; or
(e) any delay in the provision of the
health service to the user might result in his or her death or irreversible
damage to his or her health and the user has not expressly, impliedly or by
conduct refused that service.”
- The autonomy and self-determination of mentally ill patients in terms of informed consent are protected in the Mental Health Care Act[51] which makes it clear that a mentally ill person may generally be able to consent to healthcare. The mere fact that a person is mentally ill does not per se imply that the person is unable to consent. When a mentally ill patient is deemed incapable of giving consent, or is under the age of 18, proxy or substituted consent may be given. Section 17 of the Act dictates that every health care provider must, before administering treatment, inform a mental health care user in an appropriate manner of his or her rights.
- Autonomy and self-determination are protected in marriage in that each spouse consents to their own medical interventions, including decisions regarding contraception, sterilisation and abortion.
- Autonomy and self-determination in minors is protected in that once they have attained 14 years of age they are capable of consenting to any medical treatment. Parental consent is required for any treatment of minors under 14 years of age, and for surgical treatment under the age of 18. Carstens and Pearmain[52] discuss whether or not a minor over the age of 14 years who refuses indicated treatment can be compelled by his or her parents to undergo such treatment. They cite Van Oosten's opinion that “provided the minor has been fully informed about the consequences, risks, dangers and complications that may arise from his or her refusal, a competent minor's consent or refusal should conclude the matter.”
- Autonomy and self-determination in the area of termination of pregnancy and sterilisation are covered in the Termination of Pregnancy Act 92 of 1996 and the Sterilisation Act 44 of 1998. A woman or child of any age can consent to a termination of pregnancy. If under 18, the attending healthcare professional must advise her to consult with her parents or other confidante, but she is not obliged to follow this advice[53]. A girl under 18 may not consent to a sterilisation.
- The individual's right to autonomy and self-determination in the area of informed consent is not absolute and is superceded in the case of emergencies, statutory authority and court orders.
4.4.2.Emergencies
When, due to unconsciousness, delirium,
shock or coma arising from indulgence or accident, it is impossible to obtain
the patient's consent and medical treatment is required to save life or
preserve health, treatment may proceed without consent provided the treatment
cannot be delayed, and provided the patient is truly incapable of consenting.
The treatment must be intended to be in the patient's best interest. Even in an
emergency situation, a patient is, in terms of their right to
self-determination, entitled to refuse life-saving treatment.
4.4.3.Statutory authority
There are instances where a medical
intervention can be carried out irrespective of whether the patient consents to
it. Examples include the taking of a blood sample which may be relevant to
criminal proceedings[54];
medical treatment of a non-consenting person where failure to treat him or her
would result in a serious risk to public health; disclosures of suspected child
abuse; notification of abuse of aged persons and compulsory medical treatment
of people suspected of being carriers of communicable diseases.
4.4.4. Court order
Resorting to a court order to override a
patient's autonomy and self-determination should always be seen as a last
resort, but is sometimes necessary in the case of minors where there is a
dispute between parents and child, or between parents and doctor or where there
is an unreasonable parental refusal to a medical procedure. The High Court is
the upper guardian of all minor children and its guiding principle is always
what is in the best interests of the child.
5.
Conclusion
In my introduction I stated that in most
medical ethics literature an autonomous person is said to be self-determining.
In this essay I have argued in favour of autonomy as a quality which requires
creation and respect. I have shown that the ethical guidelines of the HPCSA and
the laws of South Africa
In South Africa
[9] S R Benatar ‘The
changing doctor-patient relationship and the new medical ethics’ (1987) 5 SA Journal of Continuing Medical Education
27 27.
[11] E Shinebourne & A Bush For Paternalism
in the Doctor Patient Relationship in R Gillon (ed)
Principles of Health Care Ethics 399-419.
[12] R Veatch Against Paternalism
in the Patient – Physician Relationship in R Gillon (ed) Principles
of Health Care Ethics (1994)
399-408.
[15] D Giesen ‘From
paternalism to self-determination to shared decision making’ Law and medicine 107,116 FAMH 7013
Binder.
[16] R Cook Gender, Health and
Human Rights in J Mann S Gruskin M Grodin G Annas Health and Human Rights (1991) 258.
[26] Van Biljon v Minister of
Correctional Services: B & Others v Minister of Correctional Services and
Others 1997 (4) SA 441 (C),1997 (6) BCLR 789 (C).
[30] C Ngwena & R Cook Rights
Concerning Health in C Brand
and C Heyns (eds) Socio-Economic Rights
in South Africa (2005) 138.
[32] D Bilchitz Health in S Woolman et al (eds) Constitutional Law of South Africa 2
(2005) ch 56A – 5.
[42] HPCSA General Ethical
Guidelines for Doctors, Dentists and Medical Scientists (2002) 2.2 and 2.3.
