Characterization, conservation and loss of dignity at the end‐of‐ life in the emergency department. A qualitative protocol

AIMS
To explore and understand the experiences of terminally ill patients and their relatives regarding dignity during end-of-life care in the emergency department.


BACKGROUND
The respect given to the concept of dignity is significantly modifying the clinical relationship and the care framework involving the end-of-life patient in palliative care units, critical care units, hospices and their own homes. This situation is applicable to in-hospital emergency departments, where there is a lack of research which takes the experiences of end-of-life patients and their relatives into account.


DESIGN
A phenomenological qualitative study.


METHODS
The protocol was approved in December 2016 and will be carried out from December 2016-December 2020. The Gadamer's philosophical underpinnings will be used in the design and development of the study. The data collection will include participant observation techniques in the emergency department, in-depth interviews with terminally ill patients and focus groups with their relatives. For the data analysis, the field notes and verbatim transcriptions will be read and codified using ATLAS.ti software to search for emerging themes.


DISCUSSION
Emerging themes that contribute to comprehending the phenomenon of dignity in end-of-life care in the emergency department are expected to be found. This study's results could have important implications in the implementation of new interventions in emergency departments. These interventions would be focused on improving: the social acceptance of death, environmental conditions, promotion of autonomy and accompaniment and assumption (takeover) of dignified actions and attitudes (respect for human rights).


| INTRODUCTION
Historically, most healthcare interventions have focused on illness prevention and patient recovery. In Western societies, scientific and technical developments are changing the understanding of concepts such us human being, life and death (Tellett, Pyle, & Coombs, 2012).
The progress of scientific knowledge and the technologies applied to health sciences have contributed to prolonging life expectancy. For example, between 1992 -2013, life expectancy in Spain increased by 6 years for men and 4.4 years for women (INE, 2017). Consequently, the current life expectancy in Spain is 86 years old for women and 80 years old for men (WHO, 2015). Together with increasing longevity (Matus-L opez & Cid-Pedraza, 2014), preserving people's quality of life (Sagha Zadeh, Eshelman, Setla, & Sadatsafavi, 2017) should be a primary objective of healthcare systems (Dur an Ag€ uero & V asquez Leiva, 2015). Science does not always offer a cure to diseases such as cancer, AIDS, organ failure (renal, cardiac, hepatic) or neurodegenerative diseases, which after long and painful processes lead to death. We understand a terminal disease to be an advanced, progressive and incurable disease without reasonable possibilities of response to treatment, for which life expectancy is less than 6 months (SECPAL, 2014). This is often accompanied by intense, multifactorial and changing symptoms and it has a strong emotional impact on patients, relatives and healthcare professionals (SECPAL, 2014). It is therefore a challenge for our healthcare systems to provide care and quality of life in diseases associated with advanced ages (Dur an Ag€ uero & V asquez Leiva, 2015) or terminal processes, where patients continue to encounter inadequate and poorly prepared structures for their care (Admi et al., 2013).
However, since the last century, it is also undeniable that beyond scientific and technical advances, disciplines such as bioethics have put the dying process at the centre of biomedical, ethical and philosophical research. In this respect, whilst the increase in life expectancy is indisputable, the debate over quality of life and the dying process remains open (Scanlon & Murphy, 2014). Matters such as the gradual aging of the population or the healthcare expenses for patients with chronic illnesses and/or at the end of their lives, are still sources of discussion and controversy (Forero et al., 2012;Sep ulveda et al., 2014). Beyond economic or demographic aspects, a new care framework has been consolidated in this process, which includes profound changes in the way people are experiencing, treating and caring at the end of life (Granero-Molina et al., 2014;Phillips, 2013). The repercussion is unquestionable across all levels of health and social care, but it is even more so in highly technified care contexts such as Intensive Care Units (ICU) and/or Emergency Departments (ED).
In these settings, phenomena such as the objectivization of death and the objectification of the body lead to the dissociation with the dying person, which may also lead to disregarding important aspects such as accompaniment, rituals and mourning (Scott, 2013). Respecting individual, cultural and social differences in terminally ill people and their relatives can contribute to the preservation the dying patient's dignity in ICUs and EDs. However, the lack of social acceptance of death, together with the absence of tradition in complying with advanced guidelines, can generate anguish, suffering, anger and frustration for all those who are involved in the phenomenon (Jim enez-Herrera & Axelsson, 2015). Not recognizing the imminence of death, the lack of knowledge or the inadequacy of palliative care all continue to contribute to the dying patient's arrival in the ED.
However, the ED is a space designated for looking after those who are acutely ill, where death is associated more with the failure of science than an unavoidable stage of life (Fern andez-Sola et al.,

2017).
For terminal patients, the EDs are access points for hospital care; a crossover point on the way to hospital, community care settings or home. Whilst the new palliative care policies foster home care and contribute to redirecting the situation (Becze, 2016;Richards, Ingleton, Gardiner, & Gott, 2013), patients at the end of their lives are still attending the ED (Smith et al., 2009). The ED is a place where the dying patient's body is "out of place" (Bailey, Murphy, & Porock, 2011); here, the patient with terminal cancer or a chronic/degenerative disease faces inadequate healthcare services that are rarely prepared for their care (Admi et al., 2013). This can lead to the loss of fundamental aspects of human dignity such as confidentiality, accompaniment or privacy (Nayeri & Aghajani, 2010). In the light of acute conditions that threaten his/her life, the dying patient in the ED is confronted with overcrowding, stress, lack of communication, fear and loneliness (Limehouse, Ramana Feeser, Bookman, & Derse, 2012). In this setting, patients, relatives and healthcare professionals encounter technical interventions (Nikki, Lepist€ o, & Paavilainen, 2012), futility, therapeutic limitations (Ache, Wallace, & Shannon, 2011;Scanlon & Murphy, 2014), "Do-Not-Resuscitate" orders (Jesus et al., 2014), palliative sedation (Escalante et al., 2008), advanced directives (Lee & Kim, 2010;Scheck, 2012) and even the loss of dignity (Latour & Albarran, 2012;Molan, 2012).

Why is this study needed?
• Many terminally ill patients attend the emergency department when they experience the exacerbation of end-of-life symptoms.
• Emergency departments are spaces designated for looking after acutely ill patients where death is considered to be a failure. This leads to disproportionate healthcare interventions which can cause a loss of dignity amongst end-of-life patients.
• The experiences of terminally ill patients and their relatives should be studied. This would contribute to understanding how end-of-life patients' dignity can be preserved in emergency departments, which in turn can inform the design and implementation of more appropriate care protocols and frameworks. FERN ANDEZ-SOLA ET AL.

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In these highly technified services that are focused on saving lives, the dignity of people in the process of dying can be strongly undermined (Seale, 2009). This situation not only affects patients and relatives but also healthcare professionals who show signs of anxiety (Peters et al., 2013)

| Background
In Kantian terms, dignity lies in the autonomy of individuals to use reason to assign themselves rules for their actions; autonomous beings act according this maxim: "use humanity as much in your own person as much in the person of every other; always at the same time as end and never merely as means" (Kant, 2002, p. 5). The "end in itself" condition is based on the inherent value of rational personal existence and dignity, which places individuals above everything that may have value (Kant, 2002, pp. 52-53).
This gives people a characteristic of self-respect and a certain satisfaction with themselves (Formosa, 2014). This principle presents itself to one's will as a duty that does not lie in feelings but rather demands human beings to only obey their own law, which they must try to transform into a universal principle (Kant, 2002, pp. 54-58). The notion of dignity emphasises the value and demand of unconditional respect of every individual, which cannot be reduced to a mere tool of means outside of those chosen by oneself. In the biolaw field, dignity has been incorporated as a concept with two opposing facets that, in reality, are complementary: dignity as "empowerment" and "constraint". The role of dignity in the field of bioethics and biolaw on an international level has been consolidated due to UNESCO's implementation of the Universal Declaration of Bioethics and Human Rights in 2005 (Andorno, 2011).
Every human being has dignity and the right for it to be preserved at all times. Human dignity is reflected in a set of choices, values, ideals, lifestyles (and ways to confront end of life) for each individual (Edlund, Lindwall, Post, & Lindstr€ om, 2013). Dignity at the end of life can be seen as the ability to maintain cognitive capacity, comfort or control over one's own behaviour (Guo & Jacelon, 2014).
It can also be understood as a source of respect, autonomy and the ability to make decisions and communicate (Haugen, 2010). For Kant, autonomy is the central phenomenon of dignity; therefore, life in itself does not represent the greater good that has been entrusted to us nor one which we should attend to first, but rather that there are higher ranking duties. For those who hold themselves in high esteem, acting freely is not based on fearing death but rather on facing it calmly (Kant, 2001, pp. 149-150). The importance, therefore, lies not in the human being having a long life but rather in feeling that, even at the end of life, he/she has lived with dignity (Kant, 2001, pp. 150-151).
The respect of people's dignity is profoundly changing the clinical relationship and care framework of the dying patient (Fern andez- Sola et al., 2012). Although dignity is a vague, multifaceted concept that is difficult to measure (Griffin-Heslin, 2005), it has become a fundamental issue for patients, their relatives, professionals and healthcare providers (Guo & Jacelon, 2014). Although research in this field is exhaustive, phenomenological studies have demonstrated their value in exploring patients' experiences at the end of life in areas such as critical care (King & Thomas, 2013). The Gadamerian hermeneutic phenomenology (Gadamer, 2013), which includes concepts like "pre-understanding" and "fusion of horizons" as the nuclear axis of the interpretation phenomenon; together with Chocinov's model (Chochinov, 2002(Chochinov, , 2004Chochinov, Hack, McClement, Kristjanson, & Harlos, 2002;Fern andez-Sola et al., 2017), which explains the phenomenon of dignity at the end of life in categories such as "problems related to illness", "dignity-conserving repertoire" and "social dignity inventory", have proven to be appropriate theoretical and methodological frameworks for the study of dignity in end-of-life care.
In relation to dignity, there are various countries that have intro-

| Design/methodology
A qualitative study based on the hermeneutic phenomenology of H.
G. Gadamer was designed. In alignment with Gadamer's philosophy, the existential nature of a human being means "being-in-the-world", which allows a human being to understand him/herself in a historical context and a horizon of understanding. Understanding a phenomenon requires the combination of pre-understanding, theoretical understanding, values and experiences of "being-in-the-world" (Gadamer, 2013). Moreover, this understanding encompasses an interpretative process known as the hermeneutic circle, which constitutes the circularity of movement between parts and the whole (Debesay, N aden, & Slettebø, 2008). The hermeneutic circle involves a dialogue with another "you" in a fusion of horizons marked by finitude.
According to Gadamer, a phenomenon is understood through conversation and a meeting with the truth of others, which allows one to go beyond the process of understanding and expand horizons of meaning of "being-in-the-world" (Gadamer, 2013).
The study's work plan (including objectives, tasks, milestones and deliverables) can be seen in Table 1.

| Participants
Participants will be recruited through purposive sampling and maximum variation and will comply with the following inclusion criteria: • Patients with terminal illnesses, treated at least once in the ED in the 6 months prior to data collection, with clinical stability and without cognitive deterioration, who grant consent for their participation.
• First degree relatives of terminal patients, treated at least once in the ED in the 6 months prior to data collection, with clinical stability and without cognitive deterioration, who grant consent for their participation.
• Healthcare professionals (nurses and physicians) who work in the ED and who have cared for terminal patients in ED and who grant consent for their participation.
Exclusion criteria will be: (1) to have suffered a personal loss in the year prior to the study (the mourning period could lead to bias); (2) to have any type of cognitive deterioration; and (3) to have a diagnosed disorder related to depression or state of mind.

| Data collection
The following qualitative research techniques will be carried out: participant observation (PO); focus groups (FG) and in-depth interviews.
For the participant observation, permission will be gained from the institutions participating in the project. The PO will be con- Hospital de Poniente. The researcher will be an employee from each centre and will collect field notes during their observation period.
For the interviews and focus groups, the participants will be identified when they attend one of the Emergency Departments.
Once they have been transferred back to their home or to another hospital ward, they will be contacted by the researcher to see if they would like to grant informed consent and be interviewed (patients) and/or take part in a focus group (relatives). A researcher trained in conducting qualitative interviews will go to the patient's home or hospital ward to carry out the interview. The following is planned:

| Data analysis
All the field notes, along with the transcriptions of FGs and in-depth interviews will be transcribed and incorporated into the Hermeneutic • During the data collection and transcription, researchers will gain an immediate understanding of what the participants say.
• To integrate the reader and the text, an open reading will be conducted to gain a general impression of the experiences.
• In this phase, the content of the text will be corroborated and new possibilities will be explored.
Phase 4: The fourth step will be focused on carrying out a conversation between the researchers and participants through the text. This will be done through: • Grouping units in meaning of subthemes and themes.
Together with the results of the literature review, the information obtained in the workshops will be analysed and used to create documents on care protocols and clinical pathways. Experts in end-of-life care and ED professionals will review these documents to reach an agreement on the final version through consensus techniques.

| Ethical considerations
The • Prior to obtaining consent, the research team will inform the participants about the study. Each participant will receive an information sheet about the study, be given verbal explanations and sign an informed consent form.
• The voluntary nature of participation will be guaranteed. The participants will be informed that failure to participate or complete the study will not hold any negative implications for their treatment or care.
• The risk-benefit ratio is ensured; although qualitative studies do not imply a physical risk, unnecessary inconveniences for the patients and their relatives will be avoided, adapting data collection to their needs and preferences and always considering the participants' well-being.
• The integrity and privacy of information will be protected at all times, in line with the Organic Law 15/1999 of 13 December for the Protection of Personal Data in Spain. Confidentiality of the information provided by the participants will be guaranteed, together with their anonymity. For this reason, the participants' names will be changed in the interview and focus group transcripts and in the field notes, using pseudonyms or codes (EP-1, EP-2. . . EPn). Any identifying characteristics which are not pertinent to the study will be modified. The names of professionals who are interviewed or mentioned will be removed, leaving only their professional role.
• Access to information will also be protected; only members of the research team will be able to access the information. This information will be stored in computer and audio files, protected during the study and destroyed when it finishes. The participants will be informed of the protocols for the protection, storage, access and destruction of the information obtained.

| Rigour
Although, according to Gadamer, it is not possible to achieve objectivity in a hermeneutic research project, we will be faithful to the texts and the research context. This, along with the identification of all of the stages of research, will contribute to maximizing the reliability of the study. Measures planned in other qualitative research protocols (Groot et al., 2017) will be implemented to reinforce the reliability and validity of the study. The researchers will attend meetings where they will reflect on and discuss the design, data collection and data analysis processes. Furthermore, to analyse how subsequent interviews can be improved, the researchers will review the interview protocol and listen to the first two recorded interviews. Credibility will be obtained by guaranteeing that all the participants' opinions and points of view are represented in the study results. Likewise, confirmability will be achieved by going back to the participants in all stages of the research process. Lastly, with the objective of reinforcing reliability, credibility and confirmability of the study, we will guarantee that: • The final list of topics and quotes will be confirmed by the participants in the FGs and the in-depth interviews.
• The coding will be carried out by three members of the research team.
• To ensure reflexivity, all elements of the study will be reflected on and discussed at each stage of the design: an examination of pre-understanding and the motivation for the research question will be conducted, a reflexive diary will be kept during the field work and data analysis methods that incorporate reflexivity will be employed (Green & Thorogood, 2014;Mauthner & Doucet, 2003).

| DISCUSSION
Incorporating the perspectives of patients and their relatives into the study of issues related to end-of-life care is a necessary step to improve the care of these patients (D ıaz-Cort es, et al., 2017, Marck et al., 2014. We trust that the emerging themes will be able to con-

| Changes
Changes suggested by reviewers from the funding entity (the Spanish government) have been made to the protocol. One of the problems identified was the difficulty to access participants through a project led by university researchers. To address this limitation, the team has been expanded to include physicians and nurses from the three participating hospitals. Also, further information regarding the expected participants has been included. The ethical considerations have also been expanded and the study protocol has been evaluated and approved by the "Public Health Service Biomedical Research Ethics Committee". The reviewers highly valued the interdisciplinary nature of the team, which is comprised of nurses, philosophers, physicians, anthropologists and psychologists. They also valued the methodological approach based on the combination of qualitative research and the Gadamerian hermeneutic. The reviewers expect a philosophical reflection which helps to "turn the project into something more than an interesting psychosocial study; it could even provide an interesting model to understand the contribution of philosophy in this type of research". To respond to these suggestions, a team of researchers from the areas of philosophy and nursing has been formed.

| Limitations
In Spain, there has been recent legislation about the dignity of a person in end-of-life care (Fern andez-Sola et al., 2012). This could change the paradigm of care in such a way that the concern arising among Spanish professionals might not be seen in other countries.
Furthermore, as in other European countries (Fassier, Valour, Colin, & Danet, 2016), emergency care in the public healthcare system is universally available. Our study will take place in public hospitals, where the cost of health care may not be a concern for the participants and decision-making processes may not be influenced by it.
Including participants from the private care sector could lead to different results as the influx of users in this setting is notably smaller and more matters relating to comfort are addressed. Nonetheless, it is worth mentioning that, in our context, the proportion of end-oflife care provision at a private level is irrelevant compared with public health care.

| CONCLUSION
The development of the protocol could contribute to the incorporation of the participants' experiences in the development of Plans for admission, placement, care and accompaniment of terminal patients and relatives in the ED. Furthermore, the knowledge gained through this project could prove beneficial in the diversifying of care provided for terminal patients and their relatives in the ED (e.g., psychological and spiritual support). The anticipated outcomes of this protocol include the need to restructure the physical spaces designated for the care of terminal patients and their relatives in the ED and the development of plans to restructure the organisation of work in the care of terminal patients and their relatives in the ED.

ACKNOWLEDG EMENTS
We thank all the hospitals' leadership teams and all the members of the working group for facilitating and helping with the fieldwork.

CONFLI CT OF INTEREST
No conflict of interest has been declared by the authors.

AUTHOR CONTRI BUTIONS
All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.ic mje.org/recommendations/)]: • substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; • drafting the article or revising it critically for important intellectual content.