See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/241752332

Patient's autonomy and informed consent

Article · January 2003

CITATIONS READS

2 13,803

1 author:

Evanthia Sakellari
University of West Attica
37 PUBLICATIONS   93 CITATIONS   

SEE PROFILE

Some of the authors of this publication are also working on these related projects:

"Schizophrenia" on the Internet View project

All content following this page was uploaded by Evanthia Sakellari on 07 February 2014.

The user has requested enhancement of the downloaded file.

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

ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR) Page 1 - of 9

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

ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR) Page 2 - of 9

(1994) described a broader definition which refers to
autonomy as “a set of diverse notions including self-
governance, liberty rights, privacy, individual choice,
liberty to follow one’s will, causing one’s own
behaviour and being one’s own person”.
In 1994, an editorial in the journal Lancet, related to
patients’ rights and autonomy, stressed that people
are being granted self-determination and the right to
govern themselves, including the right to determine
their own health priorities (Lancet, 1994).
Some years later Nessa and Malterud (1998)
described autonomy as a sort of mental competence
that determines both the individual’s inner and
outward behaviour.
In the new millennium, Leino-Kilpi et al. (2000)
argued that there are three central concepts of
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
thinking and decision. In 2002, Vaughan and Leddy
supported similar ideas that describe autonomy in
the personal sense as the personal freedom, the
freedom of will and the right of self-government.
Further issues related to patient autonomy
Autonomy means that people have the right to make
their own decisions as far as their decisions do not
interfere to others (Leino-Kilpi et al., 2000).
Consequently patient's autonomy includes the rights
of individuals to make informed decisions about their
medical care (Blackhall et. al, 1995) and that implies
a right to set limits for medical intervention (Nessa
and Malterud, 1998).
ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR)
At this point another issue arises regarding the health
professionals' duties. As Leino-Kilpi et al., (2000)
argue, for the protection of patients’ autonomy,
health professionals should always try to ensure that
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
regarding that care.
Since the autonomy concept is complex, various
authors have tried to analyse patient autonomy, by
considering its individual components.
For example, Boladeras (1998), approached the
principle of autonomy by presupposing two ideas: a)
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
excellence, and b) the state and other individuals
must not interfere in these choices.
After reviewing the health care literature related to
patients' autonomy Dowrkin (1998) identified two
features that are common to almost all the definitions
of autonomy. 1. Autonomy relates to individuals, and
2. Autonomy is a desirable attribute.
Leino-Kilpi et al (2000) distinguished patient's
autonomy into three levels: 1)
Autonomy at the physiological level involves an
autonomous process and it is characterised by its
independence from other autonomous processes. 2)
Autonomy at the personal level involves the
determining and defining of the self. It suggests a
liberty to act in accordance with one’s will, having
independent thought and control over choice, and 3)
Autonomy at the social level, which suggests that a
Page 3 - of 9
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

ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR) Page 4 - of 9

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

ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR) Page 5 - of 9

A variety of ways can be used in order to provide
information to the patient and better quality of
informed consent could be obtained by combining
oral and written information (Kerrigan et al., 1993;
Strom-Gottfried, 1998).
Nevertheless, there are individuals, who report
difficulties in obtaining relevant information. Pfeffer
and Alderson (1997) identified three vulnerable
groups in the process of obtaining the informed
consent. These are:1) children, 2) patients with
learning difficulties and 3) unconscious
semiconscious patients.
Sometimes, health professionals underestimate the
patients' desire and ability to cope with such
information. Often, the consultation time is limited,
and there are even occasions when
professionals lack the knowledge of treatment
options and their effects. A solution to this problem
could be the use of written or audio-visual material
(Coulter, 1999). For example, since 01.01.99, in
accordance with the European Union legislation,
medicines dispensed in the member countries must
be accompanied by printed information (Collier,
1998).
Furthermore, there is a great deal of evidence that
points to the fact that patients who are satisfied with
their care are those who have their desires and
requests met (Joos, Hickam and Borders, 1994). In
addition, informed patients are more co-operative
and they recover more quickly (Skene
Smallwood, 2002; Waterworth and Luker, 1990).
Moreover, patients who are involved in decision-
making are more ready to follow the instruction of
health care professionals (Malcolm, 1994).
ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR)
Nevertheless, there are also contrasting opinions on
patients' satisfaction. Although Joos, Hickman and
Borders, (1994) found that the majority of the
patients showed desires for basic information about
disease conditions and medications, most of the
literature claims that usually patients wish to be
informed but feel detached from the decision making
process (Deber, Kraetschmer and Irvine, 1996).
Discussion
In this paper, an overview concerning patient's rights
or
of autonomy and informed consent is made, based on
a review of the existing literature.
Autonomy is a complicated concept involving
philosophical, humanistic, personal and social
aspects. With respect to patient, autonomy has been
health
characterised as the core legal and ethical principle
underlying all human interactions in health care.
However, individuals understand autonomy in their
personal way which reflects the perception of the
concept as it is distilled from the individual mixture
of experiences, values, ethics, stereotypes and other
cultural factors. Although respect for patient
autonomy represents a fundamental ethical principle
in health care, patient autonomy is an
interdisciplinary enterprise and the variety of
professional views produced a variety of definitions.
Another essential right of patient is informed
consent. Every individual has the right to receive
information about the availability of health services,
and
about one's own condition and about relevant
treatment strategies. Informed consent is grounded
in the ethical principle of respect for persons as
autonomous beings and it is the cornerstone of
patient autonomy. The concepts of autonomy and
Page 6 - of 9
informed consent are different, but they overlap in
areas of definition as well.
In the past two decades progress was made towards
the patients' rights in the European area. The
European Consultation on the Rights of Patients
meeting supported by the W.H.O. Regional Office for
Europe formulated in 1994 the principles of Patients’
Rights (W.H.O, 2002) which were accepted by the 36
participating countries. In those principles respect of
the human rights and values in health care,
information about health services, patient's
autonomy and consent are detailed. In addition, a
European network has been established in order to
promote patient's rights and for sharing and
providing information on the developments with the
regard to the patients' rights, throughout the
European region (Richards, 1999).
It can therefore be concluded that health care
professionals should always consider the client’s
rights as important factors intervening in the
provision of high quality care. Moreover, health care
professionals, having knowledge and respect of
patient's rights are able to improve the ethical quality
of acre and fulfil their aim of promoting and
supporting the health of their clients.
Moreover, health care and nurse educators should
provide their students with more theory and practice
on ethics during their undergraduate studies.
Furthermore, continuing educational programmes
for the existing health care staff, emphasizing
patients' autonomy and informed consent, may have
an impact on their practices as well.
ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR)
References
1. Anonymous (1995), Cultures diverge on patient autonomy, AJN,
November: 10-11.
2. Anonymous (1999), ICN on women’s health: making strides: from
the universal declaration of human rights to the recognition of
women’s health rights, Int. Nurs., Rev., 46(3): 82-83.
3. Arnold T. (2002), The informed consent doctrine, New Jersey
Medicine, 99(4): 24-31.
4. Barer D. (1997), Respect for autonomy may conflict with principle
of beneficence, BMJ, 315: 254.
5. Bayne R. (1998), Considering patient autonomy, JAMC, 159(8):
919-920.
6. Blackhall L.J., Murphy S.T., Frank G., Michel V. and Azen S.
(1995), Ethnicity and attitudes toward patient autonomy, JAMA,
274(10): 820-824.
7. Collier J. (1998), Patient-information leaflets and prescriber
competence, Lancet, 352(9142).
8. Courtes A. (1999), Sharing decisions with patients: is the
information good enough?, BMJ, 318(7179).
9. Deber R.B., Kraetschmer N. and Irvine J. (1996), What role do
patients wish to play in treatment decision making?, Arch Intern
Med, 156: 1414-1420.
10. Edwards K.A. (1999), Informed consent (online). Available:
http://eduserv.hscer.washington.edu/bioethics/topics/consent.ht
ml (accessed: 02.06.02).
11. Gillon R. (1985), Autonomy and the principle of respect for
autonomy, BMJ, 290.
12. Gostin L.O (1995), Informed consent, cultural sensitivity, and
respect for person, JAMA, 274(10): 844-845.
13. Habiba M.A. (2001), Examining consent within the patient-doctor
relationship, Journal of Medical Ethics, 26(3): 183-192.
14. Haddad A. and Vernarec E. (2001), Ethics in action, RN, 64(5): 25-
26.
15. Ikonomidis S. and Singer P. (1999), Autonomy, liberalism and
advance care planning, Journal of Medical Ethics, 25(6): 522-534.
16. Joos J.K., Hickman D.H. and Borders E.M. (1994), An informed
patient is a satisfied patient, Modern Medicine, 62 (5).
17. Joos J.K., Hickman D.H. and Borders E.M. (1994), An informed
patient is more likely to be a satisfied patient, Geriatrics, 49(5).
18. Kayhan P. (2001), Conversation with a famous patient, Virtual
Mentor (online). Available: http://www.ama-
assn.org/ama/pub/category/3060.html (accessed: 17.10.01).
Page 7 - of 9
19. Kelligan D.D., Thevasagayam R.S., Woods T.O., Mc Welch I.,
Thomas W.E.G., Shorthouse A.J. and Dennison A.R. (1993), Who’s
afraid of informed consent?, BMJ, 306: 298-300.
20. Kene L. and Smallwood R. (2002), Informed consent: Lessons from
Australia, BMJ, 324(7328): 39-41.
21. Kerridge I. and Lowe M. (1997), Informed consent and shared
decision making, Student BMJ, 5: 275-277.
22. Lancet (1994), Health and self-determination, 343(8913): 1581-
1582.
23. Lancet (1994), Patients’ rights, 343 (8902): 911.
24. Leino-Kilpi H., Välimäki M., Arndt M., et al (2000), Patient’s
autonomy, privacy and informed consent, Biomedical and Health
Research vol.40, IOS Press, Amsterdam.
25. Levinsky N.G. (1996), Social, institutional, and economic barriers to
the exercise of patients’ rights, The New England Journal of
Medicine, Feb. 22: 532- 534.
26. Malcolm D. (1994), An advance for patients’ rights, Lancet,
343(8912): 1558.
27. Mason D. (1991), On behalf of the patient, Hastings Center Report,
21(5), Special Supplement ps9.
28. Mawan S.V. (2002), Informed consent (online). Available:
http://www.afip.org/Departments/legalmed/openfile94/inform-
2.pdf (accessed: 02.06.02).
29. Mehlman M.J. (1999), Informed consent (online). Available:
http://www.thedoctorwillseeyounow.com/articles/bioethics/conse
nt_3/ (accessed: 02.06.02).
30. Mhlongo S.W.P., Mdingi G.V. (1997), Informed consent is light
years away for black African patients, BMJ, 315.
31. Nessa J. and Malterud K. (1998), Tell me what’s wrong with me: a
discourse analysis approach to the concept of pateint autonomy,
Journal of Medical Ethics, 24(6): 394- 402.
32. Nidhi S. (1997), Question of consent, Student BMJ, 5: 277-279.
33. Nolan J.E. (2002), Legal rights of medical patients (online).
Available: http://www.ag.ohio-state.edu/ˆohioline/
(accessed:01.06.02).
34. Olley M. and Ogloff J.R.P. (1995), Patients’ rights advocacy:
implications for program design and implementation, Journal of
Mental Health Administration, 22(4): 368-375.
ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR)
35. Olsen-Chavarriaga D. (2000), Informed consent do you know your
role?, Nursing, 30(5): 60-62.
36. Omeed M.M. and Kayhan P.P. (2002), Informed consent (online).
Available: http://www.pemhigus.org/k_consent.htm (accessed:
02.06.02).
37. Osman H. and Perlin T. (1994), Patient self-determination and the
artificial prolongation of life, Health and Social Work, 19(4): 245-
252.
38. Pfeffer N. and Alderson P. (1997), The central problem is often poor
design and conduct of trials, BMJ, 315:247.
39. Pooman Khetrapal Singh (2000), Health and human rights
(online). Available: http://www.who.int/inf/human_rights.html
(accessed: 09.02.00).
40. Richards T. (1999), European network for patients’ rights set up,
BMJ, 7193: 1234.
41. Shield J.P.H. and Baum J.D. (1994), Children’s consent to
treatment, BMJ, 308: 1182-1183.
42. Smith J.A. (1994), Ethical considerations of giving patients choices,
Hospital Topics, 72(3): 15-20.
43. Staten P.A. (1999), How to cover all the bases on informed consent,
Nursing Management, 30(9): 14.
44. Strom-Gottfried K. (1998): Informed consent meets managed care,
Health and Social Work, 23(1): 25-33.
45. Tabak N. (2000), Informed consent for medical treatment (online).
Available: http://www.patients-rights.org/220e.htm
(accessed:01.06.02).
46. Vaughan J. and Leddy K. (2002), Patient autonomy (online).
Available:
http://www.vtsm.co.uk/data/prof/patients/autonomy.htm
(accessed: 02.06.02).
47. Walker L., Blechner B. (1995), Continuing implementation of the
patient self-determination act in nursing homes: challenges,
opportunities, and expectations, Generations, 19(4).
48. Waterworth S. and Luker K.A. (1990), Reluctant collaborators: do
patients want to be involved in decisions concerning care?, Journal
of Advanced Nursing, 15: 971-976.
49. W.H.O. (2002), Patients rights (online). Available:
http://www.index-bg.org/Frame/rights/Rights_home.htm
(accessed: 01.06.02).
Page 8 - of 9
 Corresponding author:
Evanthia Sakellari
Taivaanpankontie 15 As.217
70200, Kuopio
Finland
Tel. 00358-(0)44-2868968

ICUS NURS WEB J │ ISSUE 13│JANUARY - MARCH 2003 (NURSING.GR) Page 9 - of 9

View publication stats