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Article

New regulation of the right to adignified dying in Spain:Repercussions for nursing

Cayetano Fernandez-Sola, Jose Granero-Molina,

Gabriel Aguilera Manrique, Adelaida Mara Castro-Sanchez,

Jose Manuel Hernandez-Padilla and Josefa Marquez-MembriveUniversity of Almera, Spain

Abstract

Preserving dignity during the dying process requires reviewing the roles of those involved in thetreatment, care methods and decision-making. This article examines the participation and responsibilityassigned to nurses regarding decision-making in the final stages of life, as laid out in the Rights to andGuarantee of Dignity for the Individual During the Process of Death Act. This text has been analysed on thelevels of socio-cultural practice and discourse practice, using the critical discourse analysis methodology.The results show that, although the law is another result of the social trend of patient empowerment, theresponsibility of the nurses is not recognised, and they are left out of the decision-making process in thefinal stages of life.

Keywords

End-of-life nursing care, decision-making, discourse analysis, good death, law, right to die

Introduction

Human beings aspire to lead a dignified life and aim for the legal system to ensure this wish. If death is the

final act of life, a dignified life requires a dignified death; a human right that should be considered by the

law. With the aim of effectively ensuring the full dignity of a person in the process of death, the Andalusian

Parliament, a regional body with competences in health, has enacted theRights to and Guarantee of Dignity

for the Individual During the Process of Death Act(RGDIDPDA).1 This act sets out terminally ill patients

rights, the guarantees from institutions and the duties of health professionals involved in caring for the

individual, the refusal of treatment, the limitation of life support measures and palliative sedation. The act

aims to give legal security to citizens and health professionals, regulating actions, decision-making and therole of all persons involved in the process. In Spain, the responsibility of diagnosis, prognosis and decision-

making at the end of life has historically2 fallen legally to the doctor, with nurses carrying out collaborative

tasks alongside the physician but being removed from the ethical dilemmas which these actions pose.3

Given that the RGDIDPDA will regulate the duties of all those involved in end-of-life decision-making

Corresponding author: Jose Granero-Molina, University of Almera, Sacramento Road, S/N, Almera 04120, Spain

Email: [email protected]

Nursing Ethics19(5) 619628

The Author(s) 2012Reprints and permission:

sagepub.co.uk/journalsPermissions.nav

10.1177/0969733011429016nej.sagepub.com

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in Andalusia, and, for the first time, in Spain, it is essential to establish, clarify and discuss the new role

assigned to the nurse during the dying process.

Background

In contemporary societies, the transition from paternalistic medicine to the acknowledgement of individualfreedom as the core of the clinical relationship is key to the patients processes of health, illness and death.

Medical technology allows for the vital functions of patients with chronic or degenerative pathologies, or

those who are terminally ill, to be maintained.4 However, illnesses with a prognosis of limited life expec-

tancy or suffering on the part of the individual or his or her family pose ethical dilemmas regarding limits of

treatment and the dignity of the patient at the end of his or her life,5 which need to be legislated. The

RGDIDPDA is the result of dynamic interaction between three distinct legislative sources: European agree-

ments, legislation produced by the Spanish state and legislation produced by the Autonomous Regions. Inter-

national organisations such as the United Nations Educational, Scientific and Cultural Organization and the

Council of Europe6 publish guidelines for the final stages of life that stress the importance of the patients

autonomy, dignity and right to receive quality palliative care. These recommendations form the base of indi-

vidual laws in countries such as Spain, as set out in the Basic Regulatory Act 41/2002 for the Autonomy of thePatient and His/her Rights Regarding Information and Clinical Documentation.7 Spain is divided into Auton-

omous Regions that possess a considerable degree of freedom to legislate the rights of terminally ill patients

and end-of-life care.8 In terms of drafting regulations that set out these rights, Andalusia is a pioneering region

in Spain. Since 2003, the right to receive essential palliative care and to outline treatment preferences at the

end of life has been laid out in the Law on the Advanced Declaration of Heath Care.9 With the aim of further

dealing with patient autonomy, decision-making responsibilities and the legal security of citizens and health

professionals, the RGDIDPDA was enacted in 2010. A committee of law experts and health professionals, led

by a doctor, advised the Andalusian Government on the drafting of the RGDIDPDA. Recommendations and

preliminary contributions were collected from more than 60 collectives, including professional associations,

health syndicates and civil society organizations. This act holds institutions and public health centres respon-

sible for the assistance, treatment, palliative care, grief management and family support of the terminally illpatient, with Title IIIspecifically regulating the duties and obligations of health professionals during the dying

process. The right to agood death should first and foremost take the patient into consideration,10 as dying with

dignity involves both standardised and personal experiences. It requires the participation of the patient,

together with his or her family, in planning for the final stages of life,11 of the doctor in the diagnosis and

treatment12 and of the nurse, witness and carer from a holistic perspective.13 This includes a collaborative

role with other health professionals and an autonomous role in the fulfilment of basic needs and attention

to altered human responses. If, in practice, the nurse is present throughout all stages of the dying process,

his or her responsibility and participation in the taking of decisions and clinical information should be

reflected accordingly in corresponding written legislation.

ObjectiveThe objective of this article is to describe the RGDIDPDA and to be aware of the nurses participation and

the responsibility assigned to him or her in the decision-making process.

Methodology

Discourse analysis is a qualitative methodology used to understand how social relationships, identities and

knowledge are formed. It does this by focusing on the context in which nursing occurs and the context in

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which people experience an alteration in their health status. The critical discourse analysis (CDA) enables

the examination of texts contextualised within social, cultural and historical processes, and thus better

understanding their structure, meanings and regulations beyond the words themselves.14 It is of use when

studying decision-making regarding treatment and care at the end of life,15,16 as it allows us to conduct an

in-depth analysis of documents of interest to nursing.17 Instead of hypotheses or experiences, the CDA

views social and historical context as central to the inquiry process, using the texts to demonstrate the waysin which people use language to accomplish their objectives,18 and how discourse confirms, reproduces,

legitimises or challenges power relationships. In order to understand the role of the nurse in end-of-life

decision-making, we can apply the CDA to the RGDIDPDA,19 a methodology with a background in critical

linguistics and the views of the Frankfurt School in relation to the social character of the theory and the

control processes.20 We have framed our investigation within the model ofSocietal discursive practices:

studies of discourse and power,21 and, more specifically, within the approach of CDA offered by

Fairclough; one which can be employed in a broad range of critical social and health studies, and which

fits well with an analysis of policy issues related to nursing practice).22 Texts such as the RGDIDPDA are

considered discursive events of social practice,23 analysed on three levels,24 from macro to micro,25 exam-

ining ideology, power and identity:

The level of socio-cultural practice an assessment of the text within the context of where it was cre-

ated; an overall analysis related to power and ideology (macro level).

The level of discourse practice an analysis of the production, relationships, structure and history of the

practices surrounding the texts origin.

The level of text analysis a detailed analysis of the text examining grammar, vocabulary and style,

defining actions, the location of subjects and their relationship with each other (micro level).

Some key questions need to be considered to ensure methodological rigour in CDA,26 such as the

suitability of the research topic and text and the congruence of the data with the interpretive paradigm. For

greater interpretative rigour,27 we have analysed the conditions regarding the texts publication and have

included some citations of articles taken from the RGDIDPDA (Art) and a frequency table of the most

important categories.

Results

The RGDIDPDA is a suitable text to investigate the role that society, through legislation, assigns to the

nurse in the end-of-life decision-making process.

The level of socio-cultural practice

In line with the Council of Europes Parliamentary Assembly Recommendation (24/2003), the National

Health System Palliative Care Strategy (2007) and the Andalusian Palliative Care Plan (20082012), the

RGDIDPDA sets out a legal social demand, legislating rights and duties in relation to an individuals dignity

during the process of death: In recent years, various cases related to the refusal of treatment, the limitation

of life support measures and palliative sedation have been the cause of debate in Andalusian and Spanish

society (RGDIDPDA, Presentation of Motives, II). These new policies, developed within a social demo-

cratic government, have indicated the transition from the old, dominant, Catholic moral tradition in Spain to

the present, multicultural society, in which different beliefs, values and preferences regarding the end of life

co-exist, and hence the enactment of laws that reinforce accessibility and democratisation and give respon-

sibility to the citizen through health policies.

Fernandez-Sola et al. 621

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National Catholicism, established in Spain after the Civil War in 1939, disguised medical deontology as

moral theology. The stance of the Catholic Church determined policies relating to euthanasia and suffering

relief, without considering the limitation of therapeutic effort or palliative sedation. The influence of these

dominant morals on nurses translated into the prevalence of an ethics of virtue and compassion, extending to

palliative care, and prioritising loyalty and obedience to the physician in the technical and ethical matters. It

was not until the late decades of the 20th century that a step was taken towards an ethics of responsibility,based on the obligation of care and taking the patients autonomy into account. Furthermore, this era also

saw nursing become recognised as a profession in its own right.

The RGDIDPDA implies a commitment to patient autonomy: The emergence of the value of personal

autonomy has greatly changed clinical relationship values, which should now be adapted for the individual-

ity of the patient (RGDIDPDA, Presentation of Motives, II).

The act does not deal with euthanasia or assisted suicide, but it does consider the limitation of life support

and palliative sedation, which, without looking for death, opt for the alleviation of pain and the humanisa-

tion of the process. This is the expression of ideological dynamics and power, which come together when

the act is passed. It is marked by the search for unanimity between political forces, particularly in the group

that unites Democrats, Liberals and Conservatives: The present law does not consider the regulation of

euthanasia. On the other hand, the refusal of treatment, the limitation of life support measures and pal-liative sedation must not be classified as actions of euthanasia (RGDIDPDA, Presentation of Motives, II).

The consensus of health professionals, particularly that of professional medical associations and scientific

societies, was also sought.

Giving a terminally ill person the possibility to die in peace and without suffering is an expression of

respect for human dignity and contributes to the security of the professionals: This Act aims to decisively

contribute to giving legal security to the citizen and health professionals in relation to actions considered

under it (RGDIDPDA, Presentation of Motives, II).

The level of discourse practice

The RGDIDPDA blends the discourse of the individuals dignity during the dying process with theacknowledgement of authority in end-of-life decision-making. It forms part of a series of initiatives such

as the Charter of Rights and Obligations of Citizens in the Public Health Services of Andalusia (1999),

which aim to foster humanisation of health care and the patients decision-making capacity with regard

to his or her health. Similarly, the Declaration of Living Will Act 5/2003, the Decree 238/2004 regulating

the Advanced Directives Register in Andalusia, and the Royal Decree 439/2010 relating to Ethical Welfare

and Biomedical Investigation Bodies in Andalusia can also be found.

In a health system where reforms have started to provide nurses with capabilities in relation to home care

or medical prescriptions, this is not written in the RGDIDPDA, which regulates authority in end-of-life care.

In Spain and Andalusia, the doctor has, up to now, been the core of decision-making throughout the dying

process; nurses have not had their own voice, although they are present at every stage, from care to death.

The RGDIDPDA has set out the aspects of social and political debate in a legal text, but not those of pro-

fessional practice, where the identification of the doctor as the only expert implies a specific interpretation.

Although the RGDIDPDA recognises the right to palliative care, defined as the coordinated collection of

health interventions aimed, from a comprehensive approach, at improving the quality of life for patients

and their families (RGDIDPDA, Art. 5.c), the criteria of the nurse are required only when evaluating the

limitations of therapeutic effort. Intervention is defined as all actions carried out for preventative, diag-

nostic, therapeutic, rehabilitative or investigative purposes (RGDIDPDA, Art. 5), but it can be proposed

only by the physician responsible, defined in the Act itself as: the professional who is in charge of coor-

dinating information and the medical treatment of the patient or user, acting as their main communicator


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in all aspects of care . . . (RGDIDPDA, Art. 5.h). This supposes a contradiction with the reality of the

day-to-day care of the terminally ill patient, which mainly concerns the nurse; a framework of privileged

positions that establish group interests, with profound consequences for the nursing practice. The regu-

lation states that the patients right to decide takes precedence over all other concerns; the health pro-

fessional cannot impose his or her personal opinions or morals, either religious or philosophic. However,the nurse may also be able to contribute his or her appropriate and authorised knowledge, which, along

with the physician and other professionals, could help to conserve the patients dignity at the end of his or

her life. The limited representation of nurses in the RGDIDPDA demonstrates the relationship between

the socio-political power of the professional bodies and its corroboration in the law. This question is more

evident in a detailed textual analysis of the RGDIDPDA, which is laid out in five chapters, each divided

into 33 articles (Table 1).

The level of textual analysis

Being a legal text, the language of the RGDIDPDA employs technical terms (regulations, infractions,

sanctions) and standard expressions (Notwithstanding the stipulations of. . .

), all written in a formal tonein the third person. After explaining the principles and motives justifying the writing of the text, Title (I)

lays out the General Regulations: Objective (Art. 1), Purposes (Art. 2), Field of Application (Art. 3), Basic

Principles (Art. 4) and Definitions (Art. 5).

The act regulates patient rights and health institution guarantees, as well as the obligations of health pro-

fessionals: This act will be applicable to all staff involved in health care . . . (Art. 2). Although it defines

palliative care as comprehensive health intervention, it identifies only the figure of the doctor responsible as

the communicator and coordinator of information and for the medical care of the patient during the process,

and does not name the nurse, who is included in . . . other professionals who participate in health care pro-

cesses (Art. 5.h.).

Title II specifies the Rights of the Individual Facing the Dying Process: to healthcare information

(Art. 96); to decision-making and informed consent (Art. 7); to refusal and withdrawal of treatment (Art. 8);

to carry out the Declaration of Living Will (Art. 9); to receive comprehensive palliative care at home

(Art. 12); to pain relief (Art. 13); to the administration of palliative sedation (Art. 14); to intimacy and

confidentiality (Art. 15); and to being accompanied (Art. 16). Furthermore, the rights are also regulated

if the patient is a minor or incapacitated; those people who, because of their health status or a legal decision,

cannot take their own decisions and require people to express wishes on their behalf. In the case of the

incapacitated patient, the law leaves it at the discretion of the doctor responsible to make decisions

regarding receiving information or giving informed consent, and the role of the nurse is not specified:

When the individual under medical care is incapacitated, at the discretion of the doctor responsible . . .

Table 1. References to professionals in the articles of the RGDIDPDA

Health professionals Doctor Nurse

Presentation of motives 10 0Title I. General regulations 1 1

Title II. Patient rights 3 2Title III. Professional duties 6 8 1Title IV. Guarantees from institutions 3 0Title V. Infractions and sanctions 0 0Transitory and final regulations 2 0Total 25 11 1


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(Art. 10.1). Furthermore, it acknowledges the right of minors, emancipated minors and those under 16

years old, to revoke informed consent and to reject any treatment proposed to them by health profession-

als (Art. 11.3).

Title III states the Duties of Health Professionals Attending to Patients Facing the Dying Process :

clinical information (Art. 17), medical decision-making (Art. 18), advanced declaration of health care

(Art. 19), incapacitated patients (Art. 20) and limitation of therapeutic efforts (Art. 21).Although the right to information must be protected by all health professionals (Art. 6.2), it is the doctor

responsible who must ensure this, with the nurse included within the rest of the health professionals who

. . . are also obliged to make clinical information available depending on their level of responsibility and

their participation in the health treatment process (Art. 17). With reference to medical decision-making,

the law recognises only the doctor responsible as having the capacity to make a clinical judgement prior to

health treatment being carried out for a person during the dying process: . . . based on the latest science, the

scientific evidence available, his/her professional knowledge, his/her experience and the clinical state,

gravity and prognosis of the person affected (Art. 18). All health professionals are obliged to give infor-

mation about the right of theAdvanced Declaration of Health Care and respect any instructions given under

it. However, the duty of making decisions for an incapacitated patient lies solely with the doctor responsible,

and the opinion of other professionals directly involved in patient care is optional (Art. 20). The limitationof therapeutic efforts depends on the doctor responsible, after listening to the opinion of other professionals

including the nurse: . . . having heard the professional opinion of the nurse responsible for the care [of the

patient], the opinion of the doctor responsible is required to be the same as at least one other doctor

involved in the [patients] health care (Art. 21). The doctor responsible and the other professionals who

attend to the patient . . . are obliged to offer those health interventions necessary to ensure adequate care

and comfort (Art. 21).

Title IV makes reference to the guarantees of health institutions during the process of death with regards

to patient rights (Art. 22), accompaniment of the patient (Art. 23), family and carer support (Art. 24),

palliative care advice (Art. 25), an individual room for terminally ill patients during their stay (Art. 26) and

an Ethical Welfare Committee (Art. 27). References to professionals are non-specific.

Title V of the RGDIDPDA includes the infractions (light, serious, very serious) and sanctions fornon-compliance within six articles (Arts. 2833).

With regards to the professionals, the RGDIDPDA does not deal with any type of conscientious objec-

tion, as the regulated questions are considered part of good clinical practice, and are an indisputable right of

the patient.

Discussion

As end-of-life decision-making is included in legislation and health directives throughout the world, in

recent years the ideal of a good death has been set out as a legal and ethical requirement. 28 All those

involved are in agreement to avoid pain and to maintain dignity. However, although communication and

information are key to the patients, the continuing of care is a family matter and controlling the process is

a professional one.29 Although doctors vary greatly in attitudes, decisions and actions at the end of life,30

the majority of nurses claim to play a part in decision-making31 something which, as in the RGDIDPDA,

is neither recognised nor reflected by the law. Previous studies have acknowledged that there is limited

evidence of how nurses are actually performing end-of-life decision-making.32 It is important to value

the nursing practice, which, unlike technology,33 requires being with the terminally ill patient and

contributing to decision-making, which is a personal and incomparable process.34 The RGDIDPDA lays

out legal obligations for all professionals with respect to the patients values and preferences related to

making medical decisions, but rarely recognises the intervention of the nurse in the process. Aspects


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such as the latest science, scientific evidence and professional knowledge or experience are attributed

only to the doctor. The autonomy of the nurse comes from knowing the patient, an essential element for

making clinical judgements adapted to a specific situation,35 which is not acknowledged by the

RGDIDPDA. Various studies recognise the nurses role in satisfying individual physical needs (hygiene,

wellbeing, comfort),36 reducing symptoms (pain, dyspnea, nausea),37 relieving suffering, improving

quality of life and upholding dignity during the dying process (autonomy and final wishes). Althoughunder regulations such as the RGDIDPDA responsibility for all of these interventions lies with the doc-

tor, in practice it is the nurse who cares for the dying patient, who sees the world through another human

beings eyes and who is united with that person in their experience,38 which requires being there for the

patient listening intently and communicating carefully. This experience allows the nurse to become

close to the terminally ill patient, forming a special relationship that gives him or her the ability to antici-

pate, understand and attend to the needs of the patient and his or her family, and thus being able to con-

tribute to decision-making in his or her own professional right.39Nurses demands do not imply carrying

out actions separately from the rest of the team, but providing experience and understanding, which,

together with the doctor and carers,40 could be of use in end-of-life decision-making41; a collaboration

that is not acknowledged by the RGDIDPDA, but would contribute to providing high-quality care. 42 The

decision-making process in the final stages of life requires an interdisciplinary vision that bringstogether all medical, economic, ethical and legal aspects.43 Although pain management is the concern

of all persons involved, the priority for the patient is knowing the truth and making decisions; for the

family, it is to be with the patient; and for the doctor, it is to maintain or stop treatment and life support

measures.44 However, it is the nurse who, from the patients bedside, is the communicator among all

those involved and acquires a comprehensive understanding of the process, fundamentally centred on

emotional aspects, giving information, being present and actively listening.45 The figure of the nurse

is key to understanding patients preferences,46 defending patients decisions47 and carrying out

advanced care planning and advanced care directives.48 The nurse responsible is recognised by the fam-

ily and society as caring for children49 and adults50 at the end of life. However, in line with the literature

studied,51,52 the RGDIDPDA does not authorise him or her to make decisions regarding interventions

nor to evaluate the patients incapacity; it only makes it obligatory to listen to his or her professionalopinion in the case of limiting therapeutic efforts.

Conclusions

The majority of health services in developed societies imply status differences between professionals and

patients, which are reflected in written texts and documents. The CDA offers rigorous methods to show how

different groups manage to maintain their social status in clinical practice. The RGDIDPDA puts forward

the doctor as being the fundamental and virtually only agent in the end-of-life decision-making process.

However, although it seems logical that the figure of the doctor responsible leads decisions regarding treat-

ment, it is the nurse who has the capability of care. The figure of the nurse responsible is not recognised in

its own right, but is included within other health professionals, to whom the RGDIDPDA assigns duties

and obligations, but not the capacity to make decisions.

The dominance of medical discourse, a monopolising element when making decisions for a dignified

death, represents the exertion of authority and interests of a specific group on the rest of those involved.

The creation of the RGDIDPDA has direct implications for the formation, structuring, financing and

research of end-of-life care; a discourse that empowers the doctor as the expert and excludes the nurse. The

most problematic element of the nurses identity is his or her independence, and although the figure already

forms an integral part of ethical welfare or biomedical research committees, it is not recognised in end-of-

life decision-making.


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Limitations

Qualitative research assumes that an individuals experience can be directly represented in language;

discourse analysis is similar to other qualitative methods in that it is an interpretive process and cannot

be generalised to other situations/texts. The interpretations of the studys results are centred on the research-

ers specific view of the data; nurses and nursing teachers with professional experience in end-of-life care.

CDA deems that a text does not unequivocally mean one thing, but that it can be understood in a variety of

ways. Future investigations would benefit from the participation of patients, families and researchers from

other disciplines, as well as from triangulation with other methodologies.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit

sectors.

Conflict of interest

The authors declare that they do not have any conflicts of interest.

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