UNDERTAKING THE ROLE OF PATIENTADVOCATE: A LONGITUDINAL STUDY

OF NURSING STUDENTS

I.nsaf Altun and Nermin Ersoy

Key words: nursing ethics training; nursing students; patient advocate role; patients’ billof rights

Patient advocacy has been claimed as a new role for professional nurses and many codesof ethics for nurses state that they act as patient advocates. Nursing education is facedwith the challenge of preparing nurses for this role. In this article we describe the resultsof a study that considered the tendencies of a cohort of nursing students at the KocaeliUniversity School of Nursing to act as advocates and to respect patients’ rights, and howtheir capacities to do so changed (or not) as a result of their nursing education.

This longitudinal study used a questionnaire consisting of 10 statements relating topatient care. It was performed both at the start (1998) and at the end (2002) of the nurs-ing training. At the beginning of their course 77 students participated; in the study. Afterfour years, only 55 students participated, the reason for this drop in number beingunknown.

The questions asked nurses if patients should have: the right to receive health care; theright to participate in the decision-making process about their treatment; the right alwaysto be told the truth; and the right to have access to their own medical records. They werealso asked: if quality of life should be a criterion for discontinuing treatment; if patientshave the right to die and the right to refuse treatment; if patients should be assisted todie or helped to undergo active euthanasia; and if severely disabled newborn babiesshould be allowed to die. The student nurses demonstrated considerable insight into con-temporary nursing issues and were ready to act as patient advocates. Professional respon-sibility demands that good nurses advocate strongly for patients’ choices.

IntroductionIn recent years patient advocacy has been claimed as an integral part of the nurse’srole in health care delivery. Advocacy has become an important concept in nurs-ing practice; however, the interpretation of advocacy varies. One model includesthe protection of rights, values-based decision making, and respect for theperson.1 In the role of patient advocate, nurses protect patients’ human and legal

Nursing Ethics 2003 10 (5) © 2003 Arnold 10.1191/0969733003ne628oa

Address for correspondence: I.nsaf Altun, Kocaeli Universitesi, Kocaeli Sag� l‡k Yüksekokulu

HemÛirelik Bölümü, Yeni sanayi çarÛ‡s‡ karsisi Vezirog� lu Kampüsü, Kocaeli, Turkey. E-mail:insafaltun@mynet.com

rights and provide assistance in asserting those rights if the need arises.2–5McGraw suggested that patient advocacy is to teach patients.6 Other models sug-gest that patient advocacy is to respect patients’ decisions and enhance their auto-nomy.7–9 If a patient lacks the ability to decide, nurses should assist the personto decide, based on his or her values, beliefs and expectations.10 However, patientadvocacy is not only involved in helping patients to decide for themselves, it isalso to utilize their rights. Some nurse leaders recognize patient advocacy as arole integral to the moral values system in nursing, enhanced by the nurse–patientrelationship.11–13 According to Leddy and Pepper, the belief in advocacy as anappropriate role for nurses has evolved in harmony with earlier social movementcharacterized by consumerism, self-care, justice and human rights, equal oppor-tunities for all, and individual accountability for control.14 Given these values,nurses today readily accept the obligation to act as an advocate in their relation-ship with patients.4,14 Advocacy involves active support of autonomy, beneficenceand human dignity,14 and many nursing codes of ethics3,5 bind nurses to the roleof patient advocate and urge them to take action when the rights or safety ofpatients are jeopardized.10,13,15

Nurses need to be prepared to advocate for patients who may be at risk of violation of their basic rights.16 Nursing students should therefore develop theirsensitivity to advocate for patients’ rights. Because clinical and ethical knowledge are significantly related to the development of ethical conduct in nursing students,7,17,18 schools of nursing, health institutions and the professional organizations have obligations to prepare nurses and nursing students for the roleof advocate for patients’ health and safety.2,14,19–22

Because of these issues, we wanted to establish if training in nursing ethics dur-ing nursing education is effective in developing the advocacy role. First we triedto determine the students’ opinions about patients’ rights at both the beginningand the end of their nursing course. Then we planned to discover if their opin-ions relating to patients’ rights had or had not changed during their professionaltraining. A course in nursing ethics or nursing deontology is taught in the cur-riculum of all nursing schools in Turkey.21 Physicians and nurses have to respectpatients’ rights in Turkey, according to the Turkish Patients’ Bill of Rights and theTurkish Standards of Patient Rights.23,24

MethodWe planned this longitudinal study with nursing students at Kocaeli UniversitySchool of Nursing to explore the tendencies that nursing students exhibit withrespect to patients’ rights, and to determine the changes in these tendencies orattitudes during their education.

Design

A questionnaire consisting of two parts was developed, based on the rights ofpatients and the laws and literature in Turkey.4,23,24 The first part includeddescriptive data about students, such as gender, age and number of siblings. Thesecond part consisted of 10 questions that were prepared in the light of the

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Patients’ Bill of Rights of the Council of Europe Draft Convention for the Protec-tion of Human Rights, the Turkish Patients’ Bill of Rights, Turkish Standards ofPatients’ Rights, and codes of professional ethics.19,22–26 The questionnaire wasapproved by the Ethics Committee of Kocaeli University in September 1998.

The questionnaire part of the study consisted of the following questions. Doyou believe that:

1. Health care is a right?2. People have the right to participate in all decisions related to their health?3. Patients should always be told the truth? 4. Patients have a right to examine their health record?5. Children should be allowed to make their own treatment decisions after the

age of seven years?6. Patients have the right to die? 7. A person has the right to refuse treatment, even if it will hasten his or her

death?8. Quality of life should be the criterion for making a decision concerning dis-

continuing treatment?9. Proposals to allow members of the health professions actively to end a dying

person’s life at his or her request should be opposed by nurses and physi-cians?

10. Severely disabled newborn babies should be allowed to die?

Setting and participants

The study was carried out with the students at the School of Nursing of KocaeliUniversity between November 1998 and May 2002. The length of undergraduateeducation at schools of nursing in Turkey is four years.27,28 The questionnaire waspresented to all students (n = 77) who commenced training in November 1998.After four years, at the end of their studies, the same questionnaire was presentedto the same students, then numbering 55.

Analysis

The findings were statistically evaluated by Pearson’s test (c2) and probabilityratios. Sex, number of siblings and attitudes relating to some patients’ rights wereused as independent variables.

FindingsWe aimed to explore the tendencies demonstrated by nursing students towardspatients’ rights and to determine how effective was the nursing education andtraining in ethics in encouraging students to become patient advocates. As a resultof this and other similar studies, we believe we can say that nursing educationthat includes teaching on nursing ethics is effective in developing the role ofpatient advocacy.

Of the 77 students who participated in this study in the first year of their course,

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30% (n = 23) were men and 70% (n = 54) women. The average age of the studentswas 18.3 years. Almost half of the students had four or more siblings. Of the 55students who graduated, 38 were women and 17 were men.

Table 1 shows the opinions of student nurses concerning patients’ rights: 92.7% of the students at the beginning and 96.4% of the students in last year oftheir course stated that health care should be a right for all individuals. After fouryears, 87.3% of these students strongly agreed with this statement. In the firstyear, 45.4%, and four years later, 72.7%, of the student nurses believed thatpatients should have the right to know the truth about their condition. At the endof their course, the students’ tendency to always tell the truth to patients increasedby almost 50% (Table 1). A substantial, but smaller, increase is evident with regardto the right of patients to obtain a copy of their medical records.

At the beginning of the course, 20.0% of the students stated that children agedover seven years should participate in their own decision-making process, but,after four years, almost half of the students (47.2%) agreed with this statement.

The students’ tendencies with regard to the right to die increased in favour ofthis question after four years, there being a twofold increase in agreement. Thedifference between the answers about the right to refuse treatment, even if it willhasten the patient’s death, increased by about two-thirds. First-year studentsseemed to be hesitant about assisting patients to claim their rights, but fourth-year students were more convinced and willing to assist patients in this way. First-year students believed that taking quality of life as a basis for maintainingtreatment was a fair statement but, after four years, they were not so sure.

A striking finding is that about one-third of the students (38.2% at the begin-ning, 36.4% at the end of their education) stated that physicians and nurses shouldbe allowed to perform euthanasia in accordance with patients’ wishes. Morefemale than male students disagreed with the statement that members of thehealth professions should actively end a dying person’s life at his or her request(c2 = 9.57; df = 4; p = 0.004). At the beginning and the end of their studies, thenumbers of students who agreed that newborn babies with severe disabilitiesshould not be allowed to survive were roughly equal (Table 1).

DiscussionIn Turkey, each person has, ethically and legally, the right to health care, to beinformed, to give consent, and to refuse any treatment.23,24,29,30 Health careproviders have a moral obligation to ensure that patients give informed consentand also permission for specific procedures based on their own knowl-edge.2,5,23,24,29,30 The majority of respondents (first year 81.8%; fourth year 94.5%)believe that patients should have the right to participate in the decision-makingprocess about their treatment (self-determination). This finding indicates that stu-dent nurses are inclined to implement their ethical duty of respecting and pro-tecting patients’ autonomy. Another finding supporting this is that 32.8% of therespondents in the first year and 54.5% in the fourth year believe that patientshave the right to refuse treatment. Evaluation of the professional values of respon-dents who believe that patients have a right to refuse treatment shows that thesenurses respect other persons’ autonomy and human dignity. Nurses’ right of

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Table 1

Nur

sing

studen

ts’ be

liefs abo

ut patient rights, and

statistical ana

lysis

Do yo

u believe

that …

First ye

arFo

urth ye

arc2

df

p-va

lue

SA: no

. (%

)A: no. (%)

U: no

. (%

)D: no

. (%

)SD

: no. (%)

SA: no

. (%

)A: no

. (%

)U: no. (%)

D: no. (%)

SD: no

. (%

)

Hea

lth care is a righ

t?35

(63

.6)

16 (29

.1)

1 (1.8)

1 (1.8)

2 (3.6)

48 (87

.3)

5 (9.1)

2 (3.6)

00

2.80

120.99

Patients hav

e the righ

t to

self-determination?

30 (54

.5)

15 (27

.3)

3 (5.5)

2 (3.6)

5 (9.1)

39 (70

.9)

13 (23

.6)

1 (1.8)

2 (3.6)

021

.52

120.04

You

sho

uld alw

ays tell the truth

to p

atients?

13 (23

.6)

12 (21

.8)

13 (23

.6)

10 (18

.2)

7 (12.7)

22 (40

.0)

18 (32

.7)

6 (10.9)

9 (16.4)

014

.38

160.27

Patients hav

e a righ

t to exa

mine

their he

alth record?

17 (30

.9)

20 (36

.4)

11 (20

.0)

4 (7.3)

3 (5.5)

34 (61

.8)

14 (25

.5)

6 (10.9)

1 (1.8)

06.80

120.88

Child

ren ov

er 7 yea

rs sho

uld be

allowed

to mak

e decisions

?6 (10.9)

5 (9.1)

9 (16.4)

17 (30

.9)

18 (32

.7)

7 (12.7)

19 (34

.5)

6 (10.9)

13 (23

.6)

10 (18

.2)

14.45

200.80

Patients hav

e the righ

t to d

ie?

4 (7.3)

11 (20

.0)

12 (21

.8)

14 (25

.5)

14 (25

.5)

14 (25

.5)

15 (27

.3)

7 (12.7)

12 (21

.8)

7 (12.7)

10.06

160.86

Patients hav

e the righ

t to refuse

treatm

ent?

4 (7.3)

14 (25

.5)

11 (20

.0)

13 (23

.6)

13 (23

.6)

17 (30

.9)

13 (23

.6)

7 (12.7)

11 (20

.0)

7 (12.7)

16.05

160.44

Quality of life sh

ould be the criterion

for mak

ing a decision?

21 (38

.2)

16 (29

.1)

3 (5.5)

6 (10.9)

9 (16.4)

23 (41

.8)

11 (20

.0)

7 (12.7)

5 (9.1)

9 (16.4)

12.90

160.67

Hea

lth care professionals sh

ould

be allow

ed actively to end

a

dying

person’s life?

7 (12.7)

14 (25

.5)

11 (20

.0)

7 (12.7)

16 (29

.1)

11 (20

.0)

9 (16.4)

15 (27

.3)

8 (20.0)

12 (21

.8)

18.48

160.29

Seve

rely impaired new

born

s sh

ould be allowed

to die?

9 (16.4)

7 (12.7)

20 (36

.4)

8 (14.5)

11 (20

.9)

6 (10.9)

8 (20.0)

21 (38

.2)

7 (12.7)

13 (23

.6)

12.97

160.67

SA, strong

ly agree

; A, ag

ree; U

, undecided

; D, d

isag

ree; SD, strong

ly disag

ree

refusal of treatment to patients is opposed in both Turkish Law30 and by the Inter-national Council of Nurses (ICN) Code of ethics for nurses.3

Some of the nursing students (first year 20.0%; fourth year 47.2%) believe thatchildren should have the right to participate in the decision-making process afterthe age of seven years. This increased percentage shows that nurses care moreabout children’s consent or assent as they proceed with their training. This dif-ference can be related to recently improved nurse training in Turkey. In a priorstudy,4 the majority of registered nurses (41.5% disagreed; 46.2% undecided)stated that children should not participate in their own treatment decisions, evenafter reaching the age of seven years. The findings show that the nurse candi-dates, like registered nurses, have a tendency towards paternalistic and mater-nalistic attitudes.4,26,31

More than half of the students stated that patients should have the right toobtain and examine their medical records. This outcome is in accordance with thepreviously mentioned study on patients’ rights in Turkey.4 The right to beinformed is a basic right that helps to define a person’s freedom and dignity.Telling the truth is essential to the integrity of the patient–health-care-providerrelationship. Health care professionals are obliged to be honest with clients and,at the end of their nursing education, more students concurred with the code ofethics of health care professionals and Turkish law than at the beginning (45.4%first year; 72.7% fourth year).

In spite of this, telling patients about their serious health problems can be dis-tressing for both patients and health care professionals, but coping with thisdilemma can be helped by adequate training in ethics.2,32 This has implicationsfor Turkey. Studies performed in early 1996, after the implementation of improvednursing ethics training in Turkish nursing schools, indicated that 63.9% of nursessupported patients’ right to be informed about their illness.4 A study performedin the early 1990s indicated that only 24.45% of nurses and 31.85% of physicianssupported patients’ right to be informed.33 In a second part of this study, morethan half of the medical students surveyed in the first year preferred to tell thetruth to patients. Davis and Jameton stated that nursing students clearly showedmore support than medical students for active disclosure, informed consent,expressing professional opinions, and patients’ decision making.18 Another studyrevealed that only 14.8% of surgeons regarded the same issues to be patients’rights. In contrast, 93.2% of patients in the same study stated that they wantedto be informed about everything concerning themselves.34 In a study publishedin 2000, 74.5% of patients on haemodialysis stated that they wanted to beinformed about their prognosis, even if it was a bad prognosis.32

Nurses assess patients’ quality of life when they observe how patients are man-aging or adapting to constraints resulting from illness or injury.2,19–22 Most of therespondents in the present study were in favour of taking quality of life as thebasis for maintaining treatment; this reflects the influence of aesthetic judgementsas well as the nurses’ opinion that patients should have the right to die with dig-nity. We believe that this attitude reflects that nurses are focusing on showingrespect to patients and that it is influenced by nursing values of protectingpatients’ dignity. In addition, nurses in our country seem to give special thoughtto the principle of respect for life and human dignity. Thus, these results suggest

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that nurses may play a considerable role in helping patients to exercise theirrights.

Another striking finding is that over a third of the participants (first year 38.2%;fourth year 37.0%) stated that physicians and nurses should be allowed to per-form euthanasia in accordance with patients’ wishes. Although this is in sharpcontrast with Turkish legal, moral and religious rules, in our other study, almosthalf (49%) of the nurses surveyed stated that physicians and nurses should beallowed to perform euthanasia when this is requested by patients.4 In other stud-ies, the idea of supplying ways or means of facilitating death was found to bemorally acceptable.26,35 In Kowalski’s study36 it is reported that 44% of the nurses,and in Tanida et al.’s37 study that 20% of the nurses, thought that active euthana-sia was permissible under certain circumstances. For this reason, in nursing ethicseducation, ethical issues related to euthanasia and assisted suicide should be con-sidered from all points of view. However, we can say that these findings do implythat nurses give particular importance to the principle of respecting patients, andto the value of protecting their dignity.

Another controversial issue in our country is whether newborn babies withsevere disabilities should live or die. One-third of the respondents said thatseverely disabled newborn babies should be allowed to die. A significant num-ber of first-year and fourth-year students declined to answer the questions on thistopic. This attitude is similar to that found in our previous study,4 in which halfof the registered nurse respondents indicated that medical resources, especiallywhen limited, need to be distributed according to medical necessity and medicalindications.38 The outcomes of that study, which was performed in eight Euro-pean countries, were similar to those in the present study.39 Like the nurses whostated that quality of life should be taken as the basis for the maintenance of treat-ment, these nurses supported allowing severely disabled newborn babies to dieon the basis of aesthetics and dignity of life as a fundamental value.

Conclusion The social contract between nursing and society is to protect or preserve life, toavoid doing harm, and to create a relationship of trust and loyalty with the recip-ients of nursing actions. Hence, an expected outcome of nursing education is howto protect patients and be their advocate. The ideal patient advocate is a nursewho is nonjudgemental and able to empower patients to exercise their individ-ual rights to self-determination. Even if nurses do not agree with patients’ deci-sions, they must respect their wishes.

We believe that the outcomes of this study demonstrate the need to includeinstruction in ethics in nursing education. Because, more recently, nurse educa-tion has included ethical issues, the students’ opinions about patients’ rights wereseen to have changed slightly. Opinions on these issues are very important fornurses in their advocacy role concerning patients participating in their treatmentdecisions, children consenting or assenting to treatment, respecting patients’ rightto refuse treatment, and patients obtaining and examining their own medicalrecords. Nurses’ agreement about telling the truth and that patients have the rightto die increased over the course of the study. However, the uncertainties caused

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by taking quality of life as a treatment criterion for patients, giving permission toperform active euthanasia, and allowing severely disabled newborn babies to diewas either preserved or increased.

For these reasons, nurse teachers have an important responsibility for inte-grating new ideas and concepts about patient advocacy and nursing ethics intotheir educational programmes. They must develop an awareness of and sensitiv-ity to these significant behaviours and make sure that student nurses gain thenecessary knowledge, value and skills by making these behaviours expectedlearning outcomes.2,19–22 Thus we can say that nurses have tended to recognizeand carry out the duty of patient advocacy as one of the requisites of contempo-rary nursing if nursing ethics training is included in the nursing curriculum.14,27,40Professionalization of the role may be the only way forward if codes of ethicscontinue to make patient advocacy a mandatory activity for professional nurses.41

Acknowledgement

The authors would like to thank Verena Tschudin for her most helpful commentsand advice during the development of this article, and for her friendship.

I.nsaf Altun and Nermin Ersoy, Kocaeli University, Turkey.

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