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Patient's autonomy and informed consent

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Patient's autonomy and informed consent
E. Sakellari, BSc (HV), MSc, Research Assistant Kuopio University Finland

Abstract: Patients have the right to be involved in the decision-


making process regarding their health care and health
The present paper it is a literature review dealing with
professionals should always try to ensure that people
the concepts of patient's autonomy and informed
are not treated against their will. Informed consent is
consent focussing on how these concepts interrelate
a voluntary un-coerced decision made by a competent
with themselves and on how health professionals
autonomous individual to accept or reject some
should handle these concepts. Recipients of health
proposed course of action. Patients have the right to
care have specific rights with regard to its delivery.
be informed about their treatment and care and give
Within this context the providers of health care,
consent to the health care provider before any
should also be knowledgeable of and they have to
treatment regime can begin.
respect those rights. At the basis of the patients' rights
are autonomy and informed consent. Patient
autonomy is described as a fundamental ethical
Key words: patient rights, patient autonomy,
principle in health care. It is the right of the patient to
informed consent.
determine his/her own health issues.

INTRODUCTION

C
ontemporary bioethical standards tend to Nurses, as health care professionals, have as duty to
create respect for the patient in health promote and support client's health as well as to act
professionals, which consequently increases as advocates of their rights. According to the
also the health professionals' self-respect as well. President's Commission for the study of Ethical
Every health care client, as a human being as well as a Problems in Medical Biomedical and Behavioural
consumer of health care services, has specific rights Research (1982) a nurse does for her patient what he
with regard to the delivery of health care. Health care would do for himself if he had not lost his power of
professionals, as the providers of health care, should agency.
be knowledgeable and they should respect those
The present paper examines how the patients' right
rights. Among the major contemporary bioethical
for autonomy and for informed consent is presented
standards related to patients rights are included
in the health care literature.
autonomy and informed consensus (Husted and
Husted 1995)

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The Patient’s Rights Nevertheless, many patients remain unaware of their

The Universal Declaration of Human Rights (1948), rights, as indicated by Olley and Ogloff, (1995).

stated that: “everyone has the right to a Further research should address this question and

standard of living adequate for the health and identify the reasons why some people are not

well-being of himself and his family, including informed about their rights as others do.

food, clothing, housing and medical care and


services” (Anonymous, 1999).
Patient's autonomy

The patients' rights, as human beings rights, were


Respect for patient autonomy has been defined as the
recognised throughout the European region in the
core legal and ethical principle that underlies all
past two decades. The first country in the world with
human interactions in health care. Every adult
a special law regarding patients’ rights was Finland,
human being of sound mind has a right to determine
where a law on the patient’s status and rights came
what shall be done with his own body and he/she has
into effect in 1992 (W.H.O., 2002).
the right and responsibility to make health care
decisions (Walker and Blechner, 1995). The

The World Health Organisation is dedicated autonomous person can act, choose and think as

providing strong, international leadership for he/she wishes (Leino-Kilpi et al., 2000). However, it

promoting, advancing and protecting the right for has to be stressed that individuals have the right to

health as a fundamental human right (Poonam determine the course of their life as far as there are

Khetrapal Singh, 2000). The first international event no restrictions to the autonomy of others.

with a focus on the topic of patient’s rights was the


European Consultation on the Rights of Patients
The term, ''autonomy'' is a word of Greek origins,
meeting with the support of W.H.O. Regional Office
as it comes from the Greek word ''eautos", which
for Europe, in 1994. The event was hosted by the
means self, in combination with the word ''nomos'',
government of the Netherlands and the resulting
which means rule, governance or law. The term
Consultation document formulated for the first time
''autonomy'' is used in the English language for
in the history the principles of Patients’ Rights
describing a person's capacity to express freely
(W.H.O, 2002). The declaration which was
his/her will, or his/her capacity and freedom for
unanimously, accepted by the 36 participating
action in a particular society. Nevertheless, the term
countries, includes specific elements concerning
autonomy has a complexity in its nature and
respect of the human rights and values in health care,
therefore various attempts to define the term have
information about health services and for the best use
been made (Leino-Kilpi et al., 2000).
of them, consent, confidentiality and privacy, care
In the middle '80s Gillon (1985) argued that the
and treatment (Lancet, 1994; W.H.O, 2002). A new
concept of autonomy incorporates the exercise of
European network has been also established in order
what Aristotle called man’s specific attribute,
to promote, share and provide information with
rationality.
regard to the patients’ rights throughout the
European region (Richards, 1999). More recently, Osman and Perlin (1994) defined
autonomy as the deliberate choice making. Smith

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(1994) described a broader definition which refers to At this point another issue arises regarding the health
autonomy as “a set of diverse notions including self- professionals' duties. As Leino-Kilpi et al., (2000)
governance, liberty rights, privacy, individual choice, argue, for the protection of patients’ autonomy,
liberty to follow one’s will, causing one’s own health professionals should always try to ensure that
behaviour and being one’s own person”. people are not treated against their will, that they are
informed about their treatment and care and that
they are involved in the decision-making process
In 1994, an editorial in the journal Lancet, related to
regarding that care.
patients’ rights and autonomy, stressed that people
are being granted self-determination and the right to
govern themselves, including the right to determine Since the autonomy concept is complex, various
their own health priorities (Lancet, 1994). authors have tried to analyse patient autonomy, by
considering its individual components.

Some years later Nessa and Malterud (1998)


described autonomy as a sort of mental competence For example, Boladeras (1998), approached the
that determines both the individual’s inner and principle of autonomy by presupposing two ideas: a)
outward behaviour. the recognition of the fundamental value of an
individual's free choice for their life, plans and their
personal adaptation to the ideals of human
In the new millennium, Leino-Kilpi et al. (2000)
excellence, and b) the state and other individuals
argued that there are three central concepts of
must not interfere in these choices.
autonomy: 1. Self-governance, 2. Self-realisation and
3. Actual autonomy and defined autonomy as the
ability to think decide and act according to that After reviewing the health care literature related to
thinking and decision. In 2002, Vaughan and Leddy patients' autonomy Dowrkin (1998) identified two
supported similar ideas that describe autonomy in features that are common to almost all the definitions
the personal sense as the personal freedom, the of autonomy. 1. Autonomy relates to individuals, and
freedom of will and the right of self-government. 2. Autonomy is a desirable attribute.

Further issues related to patient autonomy Leino-Kilpi et al (2000) distinguished patient's


autonomy into three levels: 1)
Autonomy at the physiological level involves an
Autonomy means that people have the right to make
autonomous process and it is characterised by its
their own decisions as far as their decisions do not
independence from other autonomous processes. 2)
interfere to others (Leino-Kilpi et al., 2000).
Autonomy at the personal level involves the
Consequently patient's autonomy includes the rights
determining and defining of the self. It suggests a
of individuals to make informed decisions about their
liberty to act in accordance with one’s will, having
medical care (Blackhall et. al, 1995) and that implies
independent thought and control over choice, and 3)
a right to set limits for medical intervention (Nessa
Autonomy at the social level, which suggests that a
and Malterud, 1998).

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model of autonomy should take constraining factors follow the directions, values, preferences of the
into account. patient in an effort to make a decision as the patient

Ikonomidis and Singer (1999) stressed that concern would have done (Mason, 1991).

for autonomy stems from individuals' interest in


making significant decisions about their lives
In addition, another important point it is stressed in
according to their own values or concept of a good
the health care literature, the cultural issue because
life.
as Leino-Kilpi et al. (2000) argue that the concept of
autonomy has different meanings in different

Barer, (1997) supported that the respect for patient’s cultures.

autonomy presupposes that patients should be


informed about possible alternative treatments while
In US ethics, autonomy is an empirical concept
Haddad and Vernarec, (2001) argue that health care
defining the capacity to act intentionally, with
professionals should ensure the respecting of
comprehension and without controlling influences.
patient’s autonomy by sharing their personal
European ethicists interpret the principle of
experience and allowing patients to decide whether
autonomy as the capacity of a human being to impose
or not they want to hear it.
absolute moral laws upon his/herself while in non-
western cultures, some times the information and

Despite the developed literature and efforts made, decision making is not only a patient’s responsibility

patients are very often excluded from the health care but it is also his family's responsibility (Anonymous,

decision process and usually health care professionals 1995).

come first to an agreement regarding treatment or


care and then they discuss it with the patient (Bayne,
1998).
Patient's right to information and its
importance in health care: the concept of
However, patients and health care professionals informed consent
should have as their common goal the realisation and
maintenance of the patients’ capacity to be free and
In 1994, the European Consultation in Amsterdam
autonomous. Therefore, health care professionals
resulted in the “Declaration on the Promotion of
should make sure that patients understand the basics
Patient’s rights in Europe”. One of the four main
of their diagnosis and their proposed treatment and
points of the Declaration was concerning the patient’s
they have to help them feeling secure to refuse
right to information.
professional suggestions if they wish to (Nessa and
Malterud, 1998).

Every person has the right to receive information


about the availability of health services, about one’s
Nevertheless, there are some occasions when the
own condition and about applicable treatment,
physician may determine that a patient’s decision-
including information about the health care providers
making capacity is impaired. Then, a surrogate
(Leino-Kilpi et al., 2000).
should be involved in decision making who will

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Patients have the right to be involved in all aspects of obtaining the patient’s consent (Olsen-Chavarriaga,
their care, including giving informed consent to the 2000).
health care provider (Staten, 1999). Informed consent
is grounded in the ethical principle of respect for
However, to arrive at informed consent, it is
persons as autonomous and it is the cornerstone of
necessary to provide the patient with adequate
patient autonomy (Kayhan, 2001). Autonomous
information about all aspects of his/her choices and
persons are capable of deliberation concerning
this information should be sufficient and accurate
personal goals and of acting under this direction of
(Hadda and Vernarec, 2001). Adequate information
deliberation (Gostin, 1995). The concept of informed
includes explanation and details on the benefits and
consent in biomedical ethics means a voluntary
risks of the proposed and alternative treatments.
uncoerced decision, which is made by a competent
They also should include the option and
autonomous individual to accept or reject some
consequences of no treatment (Mehlman, 1999;
proposed course of action (Habiba 2001).
Leino-Kilpi et al., 2000; Mawan, 2002). The
information provider should be sure of the mental
The ethical imperative of giving patients competence of the patient in order to affectively
comprehensive information allows the patients to transmit information which effect informed choice
make independence choices. During this process (Nidhi, 1997; Olsen-Chavarriaga, 2000).
explicit communication of information is provided
that would relevant to help the patient decide
Health care professionals and patients should actively
whether or not to have a particular treatment or
participate in the informative process in order to
procedure (Leino-Kilpi et al., 2000). The informed
execute informed consent (Arnold, 2002). The
consent process should be seen as an opportunity for
provided information should be in a way, which does
the patient to be an informed participant in his/her
not increase anxiety or decrease confidence. The
health care decisions and as an invitation for
information should be clear and simple, avoiding
participation to health care decisions (Edwards,
medical terminology and technical expressions.
1999; Tabak, 2000). As far as patients have the right
Patients should be encouraged to ask questions and
to obtain information about their health care, they
their understanding should be checked (Kerridge and
have also the right to accept or reject any suggested
Lowe, 1997). The presentation and explanation of the
options (Levinsky, 1996). This is a fundamental right
information should be adjusted to suit the patient’s
of the patient and therefore, only after obtaining
language, level of maturity and competence. The
patient's consent treatment can be started and/or
patient should be able to weigh the relevant factors in
continued (Omeed and Kayhan, 2002; Nolan, 2002).
order to conclude to a balance view and finally make
a decision (Nidhi, 1997). The information should be
Informed consent is a process, which guarantees the provided far in advance in order for the patient
patient’s freedom, privacy and safety (Strom- sufficient time to give it due consideration and arrive
Gottfried, 1998) and one of its purposes it is to at a decision voluntarily (Leino-Kilpi et al., 2000;
maintain trust between health care professionals and Olsen-Chavarriaga, 2000).
patients (Tabak, 2000). The health care professional
who will perform a procedure is responsible for

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A variety of ways can be used in order to provide Nevertheless, there are also contrasting opinions on
information to the patient and better quality of patients' satisfaction. Although Joos, Hickman and
informed consent could be obtained by combining Borders, (1994) found that the majority of the
oral and written information (Kerrigan et al., 1993; patients showed desires for basic information about
Strom-Gottfried, 1998). disease conditions and medications, most of the
literature claims that usually patients wish to be
informed but feel detached from the decision making
Nevertheless, there are individuals, who report
process (Deber, Kraetschmer and Irvine, 1996).
difficulties in obtaining relevant information. Pfeffer
and Alderson (1997) identified three vulnerable
groups in the process of obtaining the informed Discussion
consent. These are:1) children, 2) patients with
In this paper, an overview concerning patient's rights
learning difficulties and 3) unconscious or
of autonomy and informed consent is made, based on
semiconscious patients.
a review of the existing literature.

Sometimes, health professionals underestimate the


Autonomy is a complicated concept involving
patients' desire and ability to cope with such
philosophical, humanistic, personal and social
information. Often, the consultation time is limited,
aspects. With respect to patient, autonomy has been
and there are even occasions when health
characterised as the core legal and ethical principle
professionals lack the knowledge of treatment
underlying all human interactions in health care.
options and their effects. A solution to this problem
However, individuals understand autonomy in their
could be the use of written or audio-visual material
personal way which reflects the perception of the
(Coulter, 1999). For example, since 01.01.99, in
concept as it is distilled from the individual mixture
accordance with the European Union legislation,
of experiences, values, ethics, stereotypes and other
medicines dispensed in the member countries must
cultural factors. Although respect for patient
be accompanied by printed information (Collier,
autonomy represents a fundamental ethical principle
1998).
in health care, patient autonomy is an
interdisciplinary enterprise and the variety of

Furthermore, there is a great deal of evidence that professional views produced a variety of definitions.

points to the fact that patients who are satisfied with


their care are those who have their desires and
Another essential right of patient is informed
requests met (Joos, Hickam and Borders, 1994). In
consent. Every individual has the right to receive
addition, informed patients are more co-operative
information about the availability of health services,
and they recover more quickly (Skene and
about one's own condition and about relevant
Smallwood, 2002; Waterworth and Luker, 1990).
treatment strategies. Informed consent is grounded
Moreover, patients who are involved in decision-
in the ethical principle of respect for persons as
making are more ready to follow the instruction of
autonomous beings and it is the cornerstone of
health care professionals (Malcolm, 1994).
patient autonomy. The concepts of autonomy and

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Corresponding author:
Evanthia Sakellari
Taivaanpankontie 15 As.217
70200, Kuopio
Finland
Tel. 00358-(0)44-2868968

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