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Palliative care in the emergency department as seen by providers and users: a qualitative study

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Abstract

Background

Much effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals’ and users’ perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments.

Methods

A qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis.

Results

Twenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care.

Conclusions

This study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.

Introduction

Palliative Care (PC) is defined as the holistic care approach aimed at guaranteeing relief from suffering and improving quality of life for people with life-limiting illness, as well as their families [1]. In the last decade PC has been actively endorsed by the WHO, stressing both the medical and ethical aspects of maintaining best quality of life possible, while responding to unmet needs in chronic pain and end-of-life care. In general, PC is provided within oncology units, but it has increasingly expanded its operational scope to Emergency Departments (EDs) [2,3,4,5,6,7,8,9,10,11,12]. Although many ED healthcare professionals (HPs) recognize the importance of PC provision in the ED [13,14,15,16], and various model exist on incorporating PC into the ED [17,18,19], some conceive PC to be beyond of their scope or even at odds with the principles of emergency medicine [13, 16, 20,21,22,23,24]. This has been documented in two specific surveys [22, 25], whose results evidence that PC is eventually provided to a limited number of patients presenting to the ED, presumably much fewer than those actually in need. Criticalities of PC in the ED setting have also been reported by other studies in literature considering the users’ perspective, documenting the patients’ dissatisfaction with PC in the ED. [4, 6, 26, 27]

Considering both professionals’ and users’ perspective on problems encountered in delivering and receiving appropriate PC within the ED in the context of a chronic advanced illness may provide important insight into meaningful targets for improvements in quality of care.

In the attempt to identify the critical issues in PC implementation in the ED and work towards the improvement in quality of care provided, we decided to explore the matter from the perspective of both providers (the ED professionals) and end-users (i.e. patients with chronic advanced illness visiting the ED and their relatives). The study presented herein is part of a larger project addressing the development and implementation of a PC quality improvement program in Italian EDs, according to the MRC Framework for the development of complex interventions [28].

Methods

Study design and setting

This was a generic qualitative research [29] we conducted in the ED of our institution, a 900-bed public research Hospital in Northern Italy, recently awarded the title of Clinical Cancer Centre by the Organization of European Cancer Institutes. The ED is organized in 3 units: Emergency Room, Short-stay Observation Unit, and Emergency Medicine. Staff includes 108 professionals (physicians, nurses and nursing assistants). While medical staff and nursing assistants rotate on all three wards, nurses are permanently assigned to one of them. The ED has approximately 74.000 annual visits. The Clinical Cancer Centre includes a hospital-based PC Unit with no beds, whose mission is to provide clinical consultations for inpatients and outpatients, and carry out training and research activities.

The study protocol was approved by the Ethics Committee of the Provincial Health Authority of Reggio Emilia. Our process was aligned with Standards for Reporting Qualitative Research developed from O’Brien et al. [30]

Selection of participants

We conveniently selected HPs working at the ED, stratifying them by sex and years of professional experience at the Department. We asked the management of the ED Department for the participation of six physicians, five nursing assistants and 15 nurses (five for each unit). A further sample of potential substitutes was selected, in case of refusal or inability to participate. Participants were invited by e-mail to take part in the study, and non-respondents were then contacted by phone. We also identified a purposive sample of patients and relatives (other than those of patients selected), who had visited the ED within a defined week. Eligible patients were identified by the ED nursing coordinator. Inclusion criteria were: a) patients aged 18 or older, b) with palliative care needs (estimated life expectancy of fewer than 6 months), c) with significant impairment of one or more of the quality of life dimensions, d) having visited the ED and been transferred to another hospital department. The ED nursing coordinator identified also eligible relatives. Inclusion criteria were: aged 18 years or older and had visited the ED with the patient. A researcher contacted eligible patients and relatives by phone during the patient’s hospitalization period, and invited them to participate in the study, providing them with all the information. In case of consent to participate, the researcher made arrangements for a meeting time and place.

Data collection

The opinions and perceptions of HPs were explored by means of focus groups (FGs), while feedback from patients and relatives was gathered by means of semi-structured interviews. The purpose of the FG was to encourage the interaction between participants to elicit a range of views. Four mono-professional groups were formed, in order to create an open environment that would encourage open and frank communication among the participants. The FG was conducted based on a list of relevant topics to be discussed and included an open question for each issue (Table 1).

Table 1 Focus group topic guide

FGs were held within the ED, at participants’ convenience. Each FG meeting was conducted by a pair of researchers from the Steering Committee of the study (SDL, psychologist, SA, physician, CA, nurse) with expertise in PC and in qualitative research, one with the role of facilitator and the other one as observer. The facilitator introduced the topics, encouraged participation and addressed issues raised by respondents. The observer took detailed field notes on the nature and type of participation of group members, and ensured that discussion was aligned with the aim and the topics of the FG. The day after each FG, the facilitator and the observer met to compile a written report in which salient topics and verbatim responses were set out.

As to the interviews to patients and relatives, these were structured to follow a topic guide (Table 2) to explore the recent experience of the ED visit, with specific focus on problems encountered. Interviewers (CA, MC) were a nurse and a physician with expertise in palliative care and qualitative interviewing. Written informed consent was obtained for all the participants. Explicit permission was given for the interview and the FG to be audio-recorded. Interviewers did not meet and know the participants before the study.

Table 2 Patients and relatives’ interview guide

Data analysis

Both FGs and interviews have been transcribed verbatim. The researchers did not return transcripts to participants. Both datasets were analyzed using thematic analysis [31]. SDL, CA and SA transcribed the recordings verbatim; they then read it with GM several times. Field notes were used to evaluate any insightful non-verbal behavior, setting the focus of the coding process on manifest and latent contents of the transcripts. Each transcript was labeled independently by two researchers, who met to discuss the initial codes. Then, labels were combined to identify the core themes and sub-themes. The two researchers brought their analysis and discussed to reconcile differences in labeling. The themes were further reviewed by LG and GC to ensure accuracy. The list of topics identified was discussed with FDV (psychologist). Afterward, it was reviewed and refined to assure its internal coherence. Finally, the same thematic analysis was applied to both the datasets in order to evidence similarities and differences between providers’ and users’ perception.

Results

Characteristics of study subjects

Of the 26 selected professionals, 21 participated in the FG meetings (4 physicians, 12 nurses, 5 nursing assistants). Two professionals who could not participate in the FG meetings, for not-disclosed reasons, were replaced with their substitutes; however, five could not be replaced as they did not provide timely notice for researchers to contact substitutes. The mean duration of each FG was 57 min. Semi-structured interviews were performed with six patients and five relatives, 1 or 2 days after transfer from ED to another hospital ward. Table 3 reports the main characteristics of interviewed subjects. There were not repeated interviews.

Table 3 Characteristics of interviewed subjects (n = 11)

Main findings

Several common topics were identified and grouped under five core themes: shared priorities in ED among professionals and patients, the information provided by professionals and that desired by relatives, perceptions of environment and time, limitations and barriers to the continuity of care and the contrasting interpretations of giving and receiving PC. The following paragraphs report on insights into themes and sub-themes that emerged, pointing out commonalities and differences between the different ‘actors’ (i.e. providers and users) involved in the experience of caring and being cared for when dealing with an advanced chronic-degenerative illness within the ED. These themes, together with their component sub-themes, are described more in detail in Table 4, where representative quotes from participants were also reported.

Table 4 Themes, sub-themes and representative quotations from qualitative analysis

Theme 1: shared priorities in ED among professionals and patients

All professionals agreed that their priority in treating a PC patient is to relieve the patient’s physical suffering. Communication, conceived as a set of techniques for receiving and delivering appropriate information, as well as being attentive to the patient’s emotions, was only a marginal issue. This emerged both from the FGs and from the patients’ narratives. As stated by one patient with pulmonary disease “The assistance I received was great; I went in gasping for air and went out breathing!”.

As to the emotional and relational aspects of communication, nurses and nursing assistants repeatedly underlined the uneasiness they felt in dealing with the patient suffering from physical symptoms, trying to find the “right” balance between closeness and distance. Some referred to cope with this difficulty either focusing their interventions on the practical care tasks, or avoiding an empathetic and human contact with the patient: “Sometimes we shield ourselves behind the fact we’re busy carrying out our work [omitted], hoping the patient will get transferred as soon as a free bed comes available [omitted], because we’re uncomfortable, we don’t know how to act...”. Such uneasiness was not perceived by patients, who, on the contrary, felt satisfied about how they were being cared for. As one woman with advanced cancer stated: “I felt everything was going well, that I was already under their protection”.

Theme 2: the information provided by professionals and that desired by relatives

Although HPs did not seem to consider communication with patients an issue, they did feel that there were some critical aspects in communicating with the patient’s relatives and in passing information among colleagues in the ED. Physicians claimed they remain bewildered by the patients relatives’ unrealistic expectations for what can be done, lamenting they were often blamed by the relatives for not doing enough for their loved one. “There is this prejudice: no medical action is being undertaken to care for the patient who is suffering, because they cannot understand how far medicine can go and where it takes something else” as one physician said. Another aspect they agreed on was the relatives’ tendency to repeatedly asking them information concerning their sick family member. Some speculated that this was due to relatives’ human need to protect themselves from traumatic news, others to their hope to see that the information they had received were disconfirmed, others that the information they had received by healthcare professionals other than those within the ED was incomplete or incorrect.

Conversely, the relatives in turn did not perceive any issues with the information being given to them. Also when they said they had not been informed about their loved one’s condition, they justified the situation by saying they already knew what to expect and that they did not feel the need for further: “We didn’t ask anything [omitted] The moment we left home we felt it would be a last trip”.

As to the communication among staff members, nurses and nursing assistants complained about physicians’ behavior, who do not update or share with them any information on the patient until speaking directly with the patient’ relatives. On some occasions this could occur after hours, putting the nursing staff in the uncomfortable position of not knowing how to manage the patient’s family who was anxiously waiting in the waiting room. This aspect had not been perceived by the patient’s relatives interviewed.

Theme 3: perception of environment and time

Another theme that emerged from our analysis was represented by more practical logistical aspects in which assistance is delivered or received in the ED, such as proper care spaces for patients to receive PC and for family members to wait. All professionals rebuked the totally inadequate spaces of the Emergency Medicine and the Emergency Room Unit for communicating bad news to patients and their families. As one nurse explained “In the Emergency Room, the only privacy patients have is provided by a curtain [omitted], while the patient’s suffering and has all the problems of the world –supposing he/she is even conscious enough to understand what’s going on-, in my opinion it’s a situation a human being does not deserve”. One relative claimed that the patient was placed on a very uncomfortable stretcher. Both nurses and nursing assistants confirmed the ED not to be organized to properly manage PC patients, lacking the means to offer proper comfort and sometimes even the drugs used in advanced stage cancer.

The lack of adequate spaces was also mentioned in reference to accommodating family members. Because EDs have not been designed to care for dying patients, there are no waiting rooms other than hallways, which sometimes not even provide basic commodities such as chairs or a coffee table, and even less the private space for receiving bad news. This aspect was not an issue for the HPs in the Short-stay Observation Unit, as the staff had in fact recently set up an area to properly host for PC patients and their family. Logistics, however, was not mentioned as an issue by the patients and relatives interviewed. Agreement among all professionals was also observed when speaking about the lack of time to properly address the special needs of a patient in PC, as well as time to interact with the patient’s relatives especially upon receiving bad news. Physicians described a state of distress as they were constantly engaged in multiple activities at the same time: “You’re there busy, feeling your patient’s abdomen, interacting with your colleagues, and meanwhile the family comes up to you for information”. Yet, on speaking about time, nurses referred another aspect, that is the patient’s waiting time at the ED before being admitted to care. As the nurses pointed out, triage procedures did not keep into due consideration the medical conditions of PC patients, and advocated that priority codes be revised accordingly.

Again, time constraints or waiting times did not represent an issue for the patients and family members, rather they highlighted the “quality” time they received at the ED: “They often come there and stay with you, sometimes pampering you and it really means a lot to me”. Only one family member lamented that his relative had to wait an extremely long time before being moved to another ward.

Theme 4: limitations and barriers to the continuity of care

Continuity of care to the patient presenting at the ED was a critical aspect. One of the most evident problems was the lack of disease-related information from the oncologist or their general practitioner (GP) on the patient’s digital clinical records. As physicians stated, the oncologists often failed to insert information on ongoing pharmacological treatments, stage of disease and other relevant information that was necessary to other HPs who might have to deal with the patient outside the oncology ward. The sharing of information hence often relied on phone contact, however many physicians were difficult to reach at out of office hours, especially on holidays. Accordingly, this lack of access to updated information prevented the ED staff to offer continuity of care to the patient. This issue was a main critical point, especially as high numbers of severely sick patients with multiple health conditions presented repeatedly to the ED. Continuity of care as to palliative treatments was only one side of care; the other was the ethical aspect of the patient’s will and end-of-life care. As stated by one physician: “And what about patients from hospices with multiple comorbidities? You can’t find a thing on what the hospice and the doctor decided for the patient!”. Both patients and relatives seemed to perceive the poor knowledge of patient’s clinical condition by professionals as a sort of intrinsic limit of the assistance within the ED. Continuity of care is felt by nurses and nursing assistants to be compromised not only for difficulties in inter-professional communication outside the ED, but also by communication issues within. They reported on the lack of contact and dialogue with medical staff, particularly with reference to the poor consideration of their assessment of patients’ pain: “They [the doctors] come tell us what they decided, but there should be more interaction with nurses to do things well.” reported a nurse. Inter-professional communication outside and inside the ED was not perceived by patients.

Theme 5: the contrasting interpretations of giving and receiving PC

Physicians expressed their awareness of having a poor knowledge on pain management of patients with incurable illness. This was also stressed by nurses, who further highlighted the physicians’ lack of competence in the proper management of other physical symptoms in patients with PC needs, such as constipation and restlessness. All professionals stressed the need to receive specific training on therapies and medical devices aimed at optimizing pain management in advanced cancer patients, also through the involvement of the hospital Palliative Care Unit not only for clinical, but also for educational purposes. Patients in turn reported on the benefits they had relief from the symptoms causing them severe suffering, and from fear of death. Moreover, all patients and most relatives highlighted that they were satisfied with the assistance and care received within the ED, and satisfaction was expressed even when physical symptoms were not completely managed by ED staff: “They worked well…nobody can fight against death…” explained a relative.

Physicians strongly emphasized their lack of skills in delivering bad news and in dealing with the psychological impact of such news on patients and relatives, “We only have our human nature to support them [omitted] it’s the situation where one human being is telling another that the person they love is about to leave us and there is nothing you can do about that a physician told us”. Both nurses and nursing assistants advocated the need for training to overcome communication problems within the ED, suggesting a continuous and repeated training over time, including practice sessions. The implementation of framework similar to training received on the clinical management of patients with acute injuries emerged as desirable by participants.

Discussion

As reported by many studies, providing PC within EDs may be challenging [32,33,34,35]. Although models have been suggested for this purpose [17], their implementation may be difficult due to the following contextual factors: lack of the ED’s access to relevant patient information [36], difficult conversations about goals of care among physicians [20], patient and family emotional distress [37], and a number of environmental issues such as noise, time limitations and lack of privacy [23, 38]. Such aspects were also confirmed by our study, and evidenced three main areas within the Italian ED context that need to be addressed and improved, i.e. a) the training for ED professionals on PC, b) the development of a shared care pathway for patients with PC needs, and c) the optimization of ED environment.

With reference to the first area, both patients and HPs conceived the relief from physical symptoms as higher in their priorities than communication issues. Physicians admitted they felt their skills in pain management were inadequate; moreover, both nurses and nursing assistants reported they felt physicians had a reluctant behavior and scarce competency in caring for patients’ physical suffering. Surprisingly, and contrary to the results from other studies [4, 14, 26, 27], all patients and most relatives were satisfied with assistance received within the ED, also where the patients’ physical symptoms were not completely relieved. In line with a quality improvement approach, focused on the appropriateness of the care provided rather than on users’ satisfaction, our results emphasize the importance of making ED staff competent and confident in appropriately managing the problems of these patients and their relatives. This could be achieved through training programs specifically developed for ED professionals, a priority claimed in several studies as a compelling requirement for them [15, 16, 21]. According to HPs’ views in our study, such training should be continuous and include not only theoretical but also experiential modules on the prompt management of physical symptoms, as well as on difficult communication scenarios, particularly with relatives.

With reference to the second area, the lack of a pathway was justified or expected as intrinsic limitation within the ED by patients participating in our study, which again is in line with literature documenting that patients’ perceptions of continuity of care varies according to both individual and contextual factors [39]. HPs had a different perception: the lacking of a pathway as a barrier to the delivery of appropriate care, denouncing both the unavailability of clinical documentation concerning patients visiting the ED and the difficulty in tracking the patient’s oncologist or GP to obtain information on the patient. These issues were also documented in other studies reporting the opinions of HPs caring for people with advanced cancer and older people presenting to EDs [16, 40], where collaborative processes, constant communication among different professionals and defined pathways were identified as priorities for improving ED-based PC. Thus, the need for the development and implementation of a shared care pathway for patients with advanced illness could have a positive influence on ED in terms of quality of the care provided to such patients and their relatives.

Concerning the third area, as emerging from the FGs environmental aspects represented a relevant issue in clinical practice, as it prevented HPs from carrying out their job properly and contributed to their feeling of frustration and inadequacy towards the patient. Our findings evidenced that the apparently trivial aspect – the lack of physical and emotional spaces – actually compared to not having a basic working instrument available. Despite this opens to the broader issue of architectural planning of places of care in general, the observations raised by HPs reconnect and are intrinsic to the purpose and mission of PC, as by its current definition [1]. Considerations on the impact of environmental factors on the quality of care emerging from our study were consistent with literature, reporting either on the lack of private spaces providing confidentiality, and time pressure made on staff, and the long waiting times claimed by patients [15, 16, 21, 22, 24]. Thus, the environment should be taken into account to implement effective quality improvement projects and to advance ED as a place capable to embrace both staff’s comfort and emotional aspects of patients with PC needs.

Limitations

Study participants were recruited at a single center, acknowledged as a research hospital in the discipline of oncology and equipped with a Palliative Care Unit. This may affect the generalizability of our findings. FGs were attended by fewer participants than expected; nevertheless, we gathered a considerable amount of information from different professionals working within all three ED units.

Our study was performed on patients and relatives of patients having moved from ED to another hospital department. We did not know if their feedback could be different in case of discharge.

Most interviews were performed by a single researcher (CA), a palliative care nurse with expertise in qualitative methodology. Nevertheless each interview, as well as each FG, was analyzed by couples of researchers, and the analyses discussed together with the whole research group, ensuring the rigor of the research process. Both patients and relatives responded in a concise way to prompts and questions of the interviews, and seemed to show some difficulties in focusing the time of stay in the ED (recall bias). This inevitably made the amount of data deriving from interviews less rich than that deriving from FGs. Still, researchers did not force the participants, respectfully listening to what spontaneously emerged from their stories. Moreover, despite conciseness, participants clearly expressed their views as well their perceptions.

Conclusions

The present qualitative study reveals how PC is acknowledged in the ED, but still far from a full and addressable integration. Indeed, ED physicians, nurses, nursing assistants, patients and their relatives reported several and different challenges, missing points, and criticalities. These reflect targets for improvements, which may help researchers and practitioners to fill the gap and to deliver high-quality PC in the ED. Findings of this study, together with those from literature review on existing interventions to improve PC in EDs, not yet published, will be the basis for the development of a quality improvement program in Italian EDs according to the MRC Framework for the development of complex interventions.

Availability of data and materials

We do not have ethics approval to make raw data from this study available for sharing.

Abbreviations

ED:

Emergency Department

FG:

Focus group

HP:

Healthcare professional

PC:

Palliative Care

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Acknowledgements

The Authors wish to thank the Management of the Department of Emergency Medicine, namely Anna Maria Ferrari and Ivana Spaggiari, for allowing this study to be carried out. The Authors would also like to thank all ED healthcare professionals as well as patients and relatives who kindly participated in this study giving their time, experience, and insights. Finally, the Authors are grateful to Manuella Walker (Pisa, Italy) for the support in editing the paper.

Funding

Not applicable.

Author information

SDL and MC conceived and developed the study protocol. SDL, SA, CA, BK, AM, LT, RU developed both the focus group and the interview guide. SDL, SA and CA facilitated the focus groups, reviewed and coded transcripts, and participated in thematic analysis of both focus groups and interviews. CA and MC conducted the interviews with patients and relatives. GM and FVD collaborated in the thematic analysis. LG and GC supervised data collection and analysis. SDL, LG and FDV drafted the article, and all authors contributed substantially to its revision. All authors read and approved the final manuscript.

Correspondence to Silvia Di Leo or Luca Ghirotto.

Ethics declarations

Ethics approval and consent to participate

The study protocol was approved by the Ethics Committee of the Provincial Health Authority of Reggio Emilia.

Consent for publication

Participants gave consent for anonymous quotes to be published from the research.

Competing interests

The authors declare that they have no competing interests.

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Keywords

  • Emergency Department
  • Palliative Care
  • Qualitative research
  • Healthcare professional
  • Patient
  • Relative
  • Improvement program