Abstract
Background:
In Hospital Emergency Department and Emergency Medical Services professionals experience situations in which they face difficulties or barriers to know patient’s advance directives and implement them.
Objectives:
To analyse the barriers, facilitators, and ethical conflicts perceived by health professionals derived from the management of advance directives in emergency services.
Research design, participants, and context:
This is a qualitative phenomenological study conducted with purposive sampling including a population of nursing and medical professionals linked to Hospital Emergency Department and Emergency Medical Services. Three focus groups were formed, totalling 24 participants. We performed an inductive-type thematic discourse analysis.
Ethical considerations:
This study was approved by ethical committees of Ethical Commitee of Clínic Hospital (Barcelona) and Comittee of Emergency Medical Services (Barcelona). The participants received information about the purpose of the study. Patients’ anonymity and willingness to participate in the study were guaranteed.
Findings:
There were four types of barriers that hindered the proper management of patients’ advance directives in Hospital Emergency Department and Emergency Medical Services: personal and professional, family members, organisational and structural, and those derived from the health system. These barriers caused ethical conflicts and hindered professionals’ decision-making.
Discussion:
These results are in line with those of previous studies and indicate that factors such as gender, professional category, and years of experience, in addition to professionals’ beliefs and the opinions of colleagues and family members, can also influence the professionals’ final decisions.
Conclusion:
The different strategies described in this study can contribute to the development of health policies and action protocols to help reduce both the barriers that hinder the correct management and implementation of advance directives and the ethical conflicts generated.
Introduction
Studies indicate that the most common causes of patient referral by Hospital Emergency Department (HED) and Emergency Medical Services (EMS) are acute or critical health problems, such as conditions of cardiac/neurological origin, or accidents with traumatic sequelae. 1,2 However, an important and growing aspect of the frequent use of HED and EMS is the worsening of symptoms in pluripathologic patients of advanced age, or with an already known terminal pathology that, on many occasions, lead them to die as a result of these conditions in these services. 1 –3
These cases, in which the high vulnerability of patients raises questions about the limitation of life support treatment, are complex and difficult to handle. Health professionals often encounter the moral conflict of ‘establishing’, ‘maintaining’, or ‘withdrawing of treatment’. 4 –7
It is known that health professionals are guided by the principles of non-maleficence, beneficence, and respect for the dignity and autonomy of patients’ choices and decisions. 8,9 Even so, at a practical level, the complexity of healthcare in these services, in which the time factor is decisive and there is no possibility of delay in decisions, professionals perceive difficulties or barriers to know or implement the patients’ advance directives. 10,11 Although there are differences between countries and levels of legal regulation, the concept of advanced directives encompasses two main elements. First, a Living wills is a legal document that reflects a person’s wishes and preference to treatment and care at the time that the person creates and signs it. 10 Second, Advance Care Planning is a deliberative, continuous and revisable process that goes beyond one document, or even one conversation. 11
Studies on this topic have pointed out that some of these barriers would be related to: the difficulty of access to computer services, in which there may or may not be evidence of those advance directives; 10,12,13 the perception of lack of time to consult them; 14 –16 the lack of an organisational and institutional view that encourages their application; 17,18 and the low proportion of advance directives documents filled out by the population. 19 Also, the lack of knowledge on the part of the professionals and the lack of skills for the management of these patients’ advance directives should be added. 20,21 Undoubtedly, these obstacles end up complicating decision-making and can generate ethical conflicts among professionals working in HED and EMS. 22 –25 In addition, there may be a potential negative impact on healthcare when making decisions that may not meet the wishes of patients who cannot manifest them. 26
Some studies, especially those of a quantitative design, do not allow us to know in a sufficiently precise manner the difficulties or barriers perceived by the professionals involved in such decision-making, such as nurses or physicians. 18,25,27,28 However, knowing these issues in greater depth would allow knowing the patients’ preferences and respect their autonomy and the right to decide on how they want to be cared for. These aspects are protected by current health regulations, thus improving healthcare in HED and EMS.
In order to close this knowledge gap, the present study considered answering the following two research questions: (1) according to the perception of health professionals in HED and EMS, what are the barriers to implementing patient’s advance directives? and (2) Does the presence of these barriers generate ethical conflicts among the health professionals of these services?
Objective
The goal of the present study was to assess the barriers, facilitator aspects, and ethical conflicts derived from the management of advance directives in HED and EMS perceived by the health professionals.
Methods
Design and scope of study
This is a qualitative phenomenological-hermeneutic study conducted in May 2019, in the EMS of Catalonia, Spain and in the HED of Mollet Hospital (Barcelona), Spain. According to Paul Ricoeur’s theory, the study is oriented to the interpretation of the lived experiences, these are the perspectives of barriers, facilitator aspects and ethical conflicts in the implementation of patients’ advance directives in the HED and EMS. 29
Participants and sampling
We performed purposing sampling including a population composed of nursing and medical professionals linked to HED and EMS. In order to obtain different perspectives concerning the perception of barriers in the implementation of patients’ advance directives in the two types of services, we determined representativeness and exclusion criteria for the sample (Table 1). These criteria were determined by the research team, which subsequently recruited the participants of the study through the corporate email of both health institutions.
Representativeness and exclusion criteria of the sample.
Based on the representativeness criteria, participant profiles were developed and intra-group heterogeneity criteria were determined based on the following variables: sex, age, years of experience, and, in the case of EMS, geographical area of work.
Two separate groups were formed by professional category, namely: G1–nurses of the HED and EMS; and G2 -physicians of the HED and EMS. Subsequently, a third group (G3) was formed with nursing and medical professionals from the HED and EMS.
Data collection
Information was collected using the focus group technique. The 3 groups were formed by a maximum of 10 participants, and the sample was composed of 24 participants (G1 = 9; G2 = 5; and G3 = 10). The duration of each session was approximately 1 h and 30 min. They were held in the classrooms of the participating hospital made available for the meetings, on three different days.
The sessions were recorded with a digital recorder and then transcribed for later analysis. In order to ensure the confidentiality of the participants, we used pseudonyms instead of their names. The debate was facilitated by using the questions of a script with the topics to be explored previously established and agreed by external experts (Table 2).
Questions guide for the focus groups.
All the focus groups were moderated by the leader and another member of the research team, who performed as observer. There was no professional or personal relationship between the moderators and the participants of the groups. A report was generated from each group taking into consideration nonverbal language, which was included in the discourse analysis.
Data analysis and rigour criteria
Data analysis was performed by both authors (SPM and AFP) guided by Ricoeur’s phenomenological-hermeneutic text interpretation theory. 29 This analysis was moved forward and backward among these three steps: (1) naïve reading of all focus group interviews, in which all the participants talked about barriers in the EMS and HED. The authors selected quotations were representative of the interviews; (2) in the structural analysis, the text was split up into ‘units of meaning’, and the next, units of significance were identified as descriptions of what the text was talking about. The authors then identified the subthemes and the main themes; (3) in the critical analysis and discussion, the authors, with relevant literature and pre-understanding, discussed and argued in favour of one or several suitable interpretations 30 as illustrated in Table 3.
Summary of the coding matrix.
In order to maintain scientific rigour, triangulation was carried out by three researchers (SPM, AFP and DRM) in the analysis of the discourses, and subsequent sessions were held for sharing. Disagreements were resolved with the consensus of a fourth researcher (NCB). We used the criteria established by Guda and Lincoln 31 concerning transferability, credibility, reliability and confirmability of the results. The criteria were checked using the COREQ tool. 32
Ethical considerations
The present study was approved by the respective ethics committees of Ethical Commitee of Clínic Hospital (Barcelona) and comittee of Emergency Medical Services (Barcelona), with reference number HCB/2020/0158. The Declaration of Helsinki guidelines and legal regulations about personal data confidentiality were followed. Each participant received oral and written information about the purpose of the study and the dynamics to be followed. Their confidentiality was assured, and they signed an informed consent form. They were also informed about the audio recordings for purposes solely related to the investigation, and that they could leave the study at any time. The professionals who participated in the focus groups were not part of the research team.
Results
Of the total of 24 subjects who participated in the study (Table 4), 11 were women and 13 men, with an age range between 25 and 61 years, and an average professional experience of 16 years in HED and EMS. Only one medical professional from the EMS had completed a course on advance directives. Data saturation was reached within the sample, so it was not necessary to recruit more participants.
Sociodemographic data of the participants.
HED: Hospital Emergency Department; EMS: Emergency Medical Services.
The structural analysis of the content provided four main themes of barriers detected in the HED and EMS: they were (1) personal and professional, (2) family members, (3) organisational and structural, and (4) those derived from the health system. Two other secondary themes were the strategies or facilitators in the management of advance directives, and the ethical conflicts generated among the professionals.
Personal and professional barriers
The discourse analysis of the participants revealed that one of the main barriers in the management of advance directives was the professionals’ lack of knowledge about the topic. However, the discourses showed that they considered the incorporation of advance directives as a tool to ensure respect for the moral autonomy of the patients, a procedure that improved the decision-making process and should be performed with the collaboration of the family members and close friends:
[…] I don’t know them, although I consider them very necessary, especially when patients want to make a decision in their last moments of life. It is very important to have everything in writing […]. (G3_Jose_Nurse_HED)
[…] The patients should perform them together with their families […]. (G2_Gonzalo_ Physician _EMS)
Regarding the identification of responsibilities relating to the information and demand of the advance directives, differences were found in the discourses of the nursing and medical professionals. Two HED physicians considered that the patients had the major responsibility in the demand of advance directives. It is worth mentioning that this fact contrasts with all the opinions of the nursing professionals, who considered the role-played by health professionals in the promotion of advance directives, especially in primary care:
[…] I don’t think it is the responsibility of health professionals to inform more, in fact it should be a demand from society […] (G2_Sofía_ Physician _
HED)
[…] Community healthcare should help the population to do it […]. (G1_Jose_Nurse_HED)
[…] We perform defensive medicine; we try to cover our backs for fear of legal problems with the families […]. (G1_Rubén_Nurse_EMS)
[…] A physician friend of mine one day told me that he was going all out for his father who had Alzheimer’s disease and was in an end-of-life situation. This opinion is completely contrary to the one we could have […]. (G3_Sergio_Nurse_EMS)
[…] We have to change our ‘chip’, we are always trained to save lives […]. (G1_Pedro_Nurse_EMS)
Family barriers
EMS professionals reported that the relatives of patients in end-of-life situations were relieved when the health professionals made the decision to refer the patients to HED. This fact was related to the lack of time that family members have to assimilate the situation in an out-of-hospital context. On the contrary, they may have more time in an emergency unit, where the situation is more predictable:
[…] In the EMS, when you have been five minutes performing resuscitation and consider that the patient will not survive, you inform the family members. This is the time when the family members assimilate that their relatives will die; however, in HED, they can have up to a few hours […]. (G3_Martín_Physician_EMS)
[…] We really don’t start from a cultural context that favours talking about this matter […]. (G2_Bárbara_ Physician _HED)
[…] I think that formalising patients’ advance directives before a public notary makes the process not very dynamic […]. (G1_Pedro_Nurse_EMS)
[…] If the patients had advance directives performed, families would be allowed to generate an assimilation process and it would not happen that, in an end-of-life situation, the families want to go all out for their relatives […]. (G1_Sara_Nurse_HED)
Organisational and structural barriers
According to the participants, the organisational and structural barriers arise when the demand for healthcare is high, and time is limited:
[…] When patients go to the HED and we have the service collapsed, we have enough by looking at their medical histories, we can’t start searching whether they have advance directives or not; we would have to be very trained […]. (G1_María_Nurse_HED)
[…] I think that, for the EMS, it would be essential to have access and know the advance directives of the persons, because when we arrive, if we do not know anything we end up going all out for outcomes. […]. (G2_Gonzalo_Physician _EMS)
[…] It would be ideal that, before arriving at the patients’ homes, EMS professionals get to know whether they patients require aggressive measures […]. (G3_Sergio_Nurse_EMS)
[…] In the emergency room, you close the curtain and, therefore, you can do anything, at the patients’ homes it is more complicated […]. (G3_Leo_ Physician _EMS)
Barriers in the health system
The professionals highlighted the lack of information campaigns addressing advance directives on radio and television promoted by the Ministry of Health. Also, they mentioned the need for a paradigm shift placing the patients in the centre of attention, reducing the medicalisation processes in the end of life, respecting the right to autonomy of decision, and adapting the resources based on bioethical principles of non-maleficence, beneficence, and justice:
[…] The health sector should carry out information campaigns on how to meet advance directives, in the form of an announcement, for example, to give a series of instructions on where to go and how to complete this document […]. (G2_Sofía_ Physician _HED)
[…] I believe that institutional campaigns similar to those of the Directorate-General for Traffic (DGT) should be carried out […]. (G2_Bárbara_ Physician _HED)
Ethical conflicts related to the management of advance directives
The discourses indicated that the main barriers that generated a greater degree of ethical conflicts among the health professionals, understood as very problematic, were as follows: the uncertainty caused by the lack of knowledge about whether the patients had previously expressed their wills; the responsibility to decide for others and the difficulties experienced in making decisions alone; opposing opinions among professionals, motivated by their own beliefs and values; the concern of ‘not harming’ the patients; and the fears that professionals perceive when they adopt behaviours contrary to those of the family members:
[…] If I don’t have advance directives done, I’m charging the physician in charge of the unit with my problem, since he has to decide for me in a very limited time […]. (G2_Héctor_ Physician _HED)
[…] Personally, it bothers me when a patient comes in his palliative phase and the physician tells you that we have to reach the end, sometimes you leave with the moral feeling of thinking what the patient would have wanted […]. (G1_Maria_Nurse_HED)
When the participants mentioned the most experienced type of ethical conflict relating to advance directives management, some professionals agreed that these situations generated moral distress, because they knew what was morally correct but could not carry it out due to obstacles propitiated by third parties, whether they were other professionals or the patients’ families. Others, on the other hand, mentioned moral indifference, claiming in their favour that the ultimate goal of HED and EMS was curing the patients:
[…] I am not really worried whether they have advance directives, I think we have to do everything; we are going to cure […]. (G1_Jose_Nurse_HED)
Strategies or facilitators to overcome barriers
The participants considered a number of factors that could help resolve difficulties related to the management of patients’ advance directives. First, specific healthcare provided to complex chronic patients in palliative services and home care was essential. This way, the collapse of HED and EMS would be reduced. In addition, healthcare provided during the end-of-life processes would be improved:
[…] The cost of referring patients at the end of life would be invested in improving palliative services and home care, in order to provide them with better home care […]. (G1_Pedro_Nurse_EMS)
All the participants showed concern about the difficulty in accessing advance directives records, and gave possible solutions that would help visualise them from any service or unit, for example, the creation of an alert system for patients with the advance directives registry, which could be consulted from any tablet and/or computer with access to the medical record:
[…] If there is no alert that informs you that the patient has advance directives, it is not noticeable to health professionals […]. (G1_Loli_Nurse_HED)
[…] It would be convenient that, when the EMS professionals come to the ED inform us that the patients have advance directives. This way, at the same time, you will check it out on the computer […]. (G1_María_Nurse_HED)
[…] advance directives consultation could be included in the algorithms of the healthcare itself, for example, in those of cardiopulmonary resuscitation […]. (G1_Pedro_Nurse_EMS)
Discussion
It was observed that the health professionals of HED and EMS perceived obstacles that hindered the proper management of advance directives. These barriers that generate ethical conflicts can be grouped into four categories, namely: personal and professional, family members, organisational and structural, and those derived from the health system.
Although the professionals knew about advance directives and their practical application, and had a positive opinion about them, there was some lack of knowledge about registration methods, regulation, and information regarding the procedure. 9,10,33,34 The participants did not know who was responsible for initiating the conversations about these wills. Rather than proactively offer information concerning advance directives, the physicians preferred to wait for such demand to come from patients and family members. Several studies have suggested that these behaviours were related to the lack of training on the ethical and legal aspects that regulate advance directives, given that they cause great discomfort in health professionals and, therefore, make ethical decisions become a difficult task. 35 –38
There was some controversy regarding decision-making and the consideration of advance directives among health professionals working in HED and EMS. In this sense, women of this professional category exhibited greater concern about ethical issues, prioritising patients’ interests. Unlike male nurses, the physicians had an opinion similar to that of women, given that they related decision-making from an ethical perspective with more satisfactory outcomes for the patients, in accordance with the findings of Moore et al. 14
In addition to gender and professional category, there were other determining aspects that could condition the final decisions of the professionals, such as experience, and personal and contextual factors. Professionals with more experience in the services felt more comfortable in resolving conflict situations. A study conducted by Erbay et al. indicated that the experience of the professionals could be an influential variable that might anticipate the resolution of the different ethical conflicts. This way, more appropriate decisions could be made in critical situations. 9 Personal and contextual factors can contribute to the performance of different actions depending on each health professional. 6,25,37,39,40 Thus, some professionals provided care focused on healing and salvation, whereas others prioritise respect for patients’ autonomy. Previous studies have described that these factors were barriers that impacted negatively and broke the ethical obligations assumed by the professionals, thus producing conflicting situations. 5,41 –43
Different authors have also pointed to the lack of time that professionals had to consult patients’ advance directives. 17,44 In the present study, the perception of not having time to inquire about advance directives was greater in EMS, thus representing one of the areas with the greatest degree of exposure to ethical conflicts. 10,33,34,45
Although barriers were detected in the management of advance directives, the professionals identified strategies that could help overcome them and reduce the ethical conflicts generated. In order to improve the management of advance directives, there is a need of effective communication between services and care levels in terms of patients’ values and preferences. 46 There is also need of unifying computer programmes, 12,47,48 in addition to create an alert system that allows the professionals to obtain a quick and effective visualisation of the patients’ wishes. These results reinforce the findings of Busquets et al., 49 who indicated that the ease of access to advance directives by professionals influenced the number of occasions in which they were consulted, and was the only variable that correlated in a significant manner with good healthcare provided at the end of life.
At the same time, in order to facilitate the implementation of advance directives in HED and EMS, it is essential to incorporate ethical and legal consultants that help professionals in the resolution of the generated ethical conflicts. 39,50,51 In addition, there should be training programmes aimed at health professionals and the inclusion of advance directives in all the guidelines and action protocols. 33
Finally, the dissemination of advance directives through institutional campaigns to promote their implementation, as well as strengthening the context of primary care, community care, and residential centres would be essential to improve their management. These centres can follow up patients with chronic diseases and those in an end-of-life situation. 44,46 With these measures, the number of referrals and deaths in hospitals might be reduced. 52
Conclusion
We observed four types of barriers that hindered the management of advance directives in HED and EMS, namely: personal and professional, family members, organisational and structural, and those derived from the health system. These barriers hinder and violate the recognition of the fundamental bioethical principle, that is, the autonomy of choice and decision on the part of the patients. In addition, they cause ethically conflicting situations among health professionals. The results of the present study identifies the need to study more broadly how the variables gender, professional category, and years of experience in the services can also influence the final decisions of the professionals.
Overall, the findings of this study pose an important opportunity for ethical reflexion for HED and EMS professionals, especially in regions with similar ACP contexts, for example Europe, the United States, and Australia. The different strategies described in this study can contribute to the development of health policies and action protocols aimed at reducing the barriers that hinder the correct management and implementation of advance directives, and the ethical conflicts generated.
Limitations
One of the main limitations of the present study was the difficulty in recruiting participants, more specifically the physicians from the out-of-hospital EMS, due to two factors, that is, travelling to different locations and work schedules.
Footnotes
Acknowledgements
The authors are grateful to all healthcare professionals who agreed to participate altruistically in the present study, and for the collaboration provided by Maria Àngels Pujols and Rosa Piqué.
Conflict of interest
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The present study was funded by Víctor Grífols i Lucas Fundation (reference number: BEC-2018-009) through a research grant awarded for Bioethics 2018. The authors, who performed independently of the funder, are entirely responsible for this research.
