Supporting ethical end-of-life care during pandemic: Palliative care team perspectives

Abstract

Background

Italy was the first European country to be involved with the COVID-19 pandemic. As a result, many healthcare professionals were deployed and suddenly faced end-of-life care management and its challenges.

Aims

To understand the experiences of palliative care professionals deployed in supporting emergency and critical care staff during the COVID-19 first and second pandemic waves.

Research design

A qualitative descriptive design was adopted, and in-depth interviews were used to investigate and analyse participants’ perceptions and points of view.

Participants and research context

Twenty-four healthcare professionals (physicians, nurses, psychologists, physiotherapists, and spiritual support) from the most affected areas of Italy were recruited via the Italian society of palliative care and researchers’ network.

Ethical considerations

The University Institutional Board granted ethical approval. Participants gave written informed consent and agreed to be video-recorded.

Findings

The overarching theme highlighted participants’ experience supporting health professionals to negotiate ethical complexity in end-of-life care. Crucial topics that emerged within themes were: training emergency department professionals on ethical dimensions of palliative and end-of-life care, preserving dying patients’ dignity and developing ethical competence in managing end-of-life care.

Conclusions

Our study showed palliative care teams’ challenges in supporting health professionals’ ethical awareness in emergencies. However, while they highlighted their concerns in dealing with the emergency staff’s lack of ethical perspectives, they also reported the positive impact of an ethically-informed palliative care approach. Lastly, this study illuminates how palliative care professionals’ clinical and ethical competence might have assisted a cultural change in caring for dying patients during COVID-19 and future emergencies.

Keywords

palliative care nursing critical care emergency nursing end-of-life care ethical challenges COVID-19

Introduction

During the first (February–June 2020) and second (September–December 2020) waves of the COVID-19 pandemic, an unexpectedly high number of people died in emergency and critical care (from now ED) contexts in Italy. Understandably, the focus of ED staff was to provide emergency treatments and saving lives. However, the need for expertise in palliative and end-of-life care was recognised. Thus, palliative care (from now PC) professionals were deployed to support and work alongside ED colleagues. This study details the experiences of palliative care professionals in sharing expertise in clinical and ethical aspects of end-of-life care to enable patients and families to have the best possible end-of-life experience.

Despite the ethical dilemmas and critical issues highlighted in this paper, we strongly believe that every health professional involved (or narrated) in our research did the best they could with the knowledge they had at the time concerning such an unprecedented critical emergency.

Background

Palliative care represents very complex practices involving professionals in clinical, ethical and moral choices like managing symptoms, minimising pain, maintaining dignity, minimising costs and facilitating patient and carer/family preferences.¹ Although palliative care’s attention to optimising the quality of life of persons with limited prognosis can constitute a long process,^2,3 end-of-life care is more related to the likelihood that death is imminent within a short period.⁴ End-of-life possesses several declinations, and literature overlaps it with palliative care at times. However, palliative care is usually referred to as a specific set of clinical skills and educational pathways. In contrast, end-of-life care can be longitudinal and belong to different fields of nursing and medical professions.⁵ Healthcare professionals consider palliative care as a specific specialisation: it requires particular expertise in pain and different symptom management and a uniquely broad approach to what is in a patient’s best interest.⁶

End-of-life care outcome is, by definition, the death of the patient, and in this way, it clashes with the established axiom of medicine that considers death as failure.^7,8 Ethical issues related to death and dying in hospital settings have been the subject of research since the 60s;⁶ social scientists and health professionals examined topics like end-of-life decision-making,^8,9 medical management of death,⁹ the timing of death¹⁰ and extraordinary treatment.¹¹ EDs were considered settings of ethically conflictive scenarios, even before the pandemic. Several studies highlighted that such a scenario is generated by issues like treatments considered futile for patients and the criteria applied for admission,^12,13 the lack of time to establish effective relationships with relatives and patients, and health professionals’ disagreements on decisions to withdraw treatments too.^14–18

During COVID-19, specifically the first wave, high demand and unexpected end-of-life care management ethically challenged healthcare workers. Intensive care units (ICUs) were overwhelmed by the demand for beds and ventilator support. Many healthcare professionals from different wards and specialities were deployed to care for COVID patients, returning to clinical practice from different clinical or non-clinical roles to support the health service. Doctors treating COVID-19 were not sufficiently prepared to manage such sudden end-of-life care of COVID patients.¹⁹ Many health professionals suddenly had to take on end-of-life care tasks that previously had been outside their professional role and activities, leading many to feel out of their ethical comfort zone. On the contrary, this is an area in which the specialist PC team (physicians, nurses, psychologists, healthcare assistants, physiotherapists, spiritual support figures and social workers) is well prepared.²⁰ The strain of such a difficult moment has been reported to have had many consequences for healthcare workers, not solely physically, but psychologically too.^21–23 While these professionals received fast-tracked training to support the physical aspects of terminally ill COVID patients, they felt the need to be more equipped to provide psychological care to patients and their families too.²⁴ The ethical processes involved in those specific emergency moments were directed at containing the infection and saving the maximum number of patients.^25,26 This scenario generated EDs and deployed professionals’ ethical dilemmas and unveiled questions like the lack of patient involvement in decision-making processes and the strain of choosing the least unfair solution.^26,27

Ethical conflicts arise when clinical decisions (and actions) are challenging to make because of internal or external factors and when there is more than one option that may be morally plausible but problematic for the circumstances.^28,29 Literature has offered a debate on the decision-making process at the end-of-life, based on two different approaches. On the one hand, the Rawlsian approach considers justice as the first virtue of social institutions and the commitment to the inviolability of every person. During the pandemic, proponents of this approach have criticised calls for compliance with a narrow conception of the legal right to treatment and more detailed guidelines on how end-of-life decisions should be made.³⁰ On the other hand, the utilitarian approach argues that maximising what is suitable for all is all there is to morality. It makes moral decisions simple by providing utility maximisation as the primary decision-making principle. During a pandemic, simple rules can operationalise this principle, such as considering the number of people that can be treated/saved, the probability, the length of treatment and life, and the resources’ availability.^31,32

Furthermore, some authors described the ethical challenges of managing conflicting views between palliative care team members and other clinical specialities or disciplines due to prioritising different individual or professional ethical principles.^2,14,19 During the COVID-19 pandemic, PC teams have experienced a drastic reduction in routine activities (e.g., hospice care and community care were reduced or even temporarily closed due to a lack of patients). Therefore, they suddenly had to switch their focus from dealing directly with patients to improving the support to their colleagues in ED and COVID Units by, for example, providing education sessions and handouts, going to their meetings, accompanying the debriefing rounds, and maintaining ongoing communication.⁷ Although PC is also well positioned to respond to a pandemic^33,34 with its focus on supporting complex decision-making, relieving suffering, and managing clinical uncertainty, there needs to be a critical gap regarding the contributions of the PC team during a pandemic.³⁵ Specifically, there is still a lack of research about palliative care team ethical support in ED during the COVID-19 pandemic.

The Italian first wave was characterised by a rapid spread of cases and deaths and a high concentration of cases, mainly in the north of the country.³⁶ The second wave had widespread hospital pressure all over the country and recorded even higher mortality in some regions than in the first wave.³³ The outcomes of this national emergency management have been controversial,^37,38 whereas the ethical dilemmas raised are still to be analysed.

During the first pandemic wave, physicians made decisions about COVID patients on their own, often without the support of other professionals. Therefore, they needed to decide quickly on two main issues: the risks related to the emergency medical interventions (e.g. intubation and mechanical ventilation) and how to distribute scarce lifesaving resources.^15,16,39 The Italian College of Intensivists (SIAARTI) emphasised that given the limited availability of resources and ICU beds, physicians should evaluate whether to reserve those for patients with a higher probability of recovery. Therefore, physicians adopted a critical model for ethical justifications in complex decision-making based on societal rather than individual ethics.¹³ Thus, it raised issues involving the ethical principle of distributive justice ‘how is one to say that one life is worth more than another?’¹⁹ This situation produced major ethical dilemmas like communicating the truth regarding the prognosis to the patient and the emergency end-of-life conditions.^18,40

Aims

This study aimed to understand palliative care professionals’ perceptions of their specific ethical and clinical support to medical and nursing staff in ED contexts, during the first and second waves of the COVID-19 pandemic in Italy.

Specifically, we aimed to elicit palliative care professionals’ support on ethical issues related to end-of-life care topics while deployed in COVID units and emergency care.

Methods

A descriptive qualitative study was adopted to examine healthcare professionals’ perspectives and experiences in providing patients’ end-of-life care during the COVID-19 pandemic in the EDs. Thematic analysis was the approach chosen to make inferences from qualitative textual data.⁴²

Data collection

Data were collected through in-depth interviews at two different times: after the first (July–August 2020) and the second pandemic waves (June–July 2021). The interviews were conducted using e-platforms (Zoom or Meet) and a semi-structured interview guide, which consisted of three open-ended questions to collect participants’ unique perspectives. Specifically, interview questions were directed firstly to investigate participants’ deployment experience. Secondarily, on their perceptions of ethical decision-making in ED settings, a final question concerned their point-of-view on the ethics of end-of-life and palliative care education in ED (and other) contexts (Table 1). At the start of each interview, participants were asked to confirm permission to be video-recorded. Participants were also told that interviews would not take more than 60 min and that they could stop the interview or refuse to answer any question. Research team members transcribed interviews verbatim.

Table 1.

Interview questions.

1. What has been the impact of the current COVID-19 pandemic on your work activities? What has been the impact of the current COVID-19 pandemic on your work activities?

2. What difficulties did you encounter in your work? Did you face and/or witness any ethical challenges in clinical practice?

3. Could you please tell me at least one episode on how you made/supported end-of-life decisions for COVID patients?

Participants

A combination of convenience, snowball and purposive sampling was used to recruit a variety of health professionals.⁴¹ Participants’ eligibility criteria consisted of being health professionals working actively in a PC team. In addition, we selected professionals from PC settings or services of the most affected areas by both pandemic waves (Lombardy, Piedmont, Veneto and Tuscany). Specifically, we selected PC professionals deployed to ED (or COVID units) or those who have had a direct experience of deployment during the Italian NHS reorganisational phase.

Data analysis

A qualitative analysis approach was used to analyse participants’ experiences and perspectives.³⁷ In particular, thematic analysis was conducted to identify patterns and themes. Following Braun and Clarke’s six-phase framework,^42,43 before starting coding, each research team member became familiar with the data reading independently through all the interview transcripts. Then, transcripts were inductively analysed to identify the descriptions of the participants’ perspectives and experiences across all data.⁴² Initial codes were generated, dividing the transcript texts into meaning units, describing and interpreting identified meanings. Then, the meaning units were condensed into themes, refined, and finalised into descriptive themes.⁴² Inter-analysis meetings served to discuss and share preliminary results by the research team and to achieve rigour.⁴⁴ Research validity was supported by realising an ordered and traceable series of cognitive actions.⁴⁴ Transferability was ensured by describing the selection and characteristics of participants, setting, data collection process and analysis. Finally, the overlapping of study findings with previous studies provided research confirmability.⁴⁴

Ethical considerations

The study was conducted in respect of the Declaration of Helsinki (https://www.wma.net) and the ethical standards of the University Unitelma Sapienza of Rome. The study was deemed not to need ethical approval because, according to Italian and university ethics regulations, it did not involve clinical treatments or biomedical equipment with clinical implications. However, the authors decided to submit the research project to the local University Ethics Board, which granted formal approval (ref. 2021/0190). At the beginning of the study activities, participants gave written informed consent and agreed to be video-recorded. Participants’ information was kept anonymous, and confidentiality was maintained throughout the study.

Findings

Twenty-four PC health professionals (nurses, physicians, psychologists, a physiotherapist and a spiritual counsellor) met the study inclusion criteria and agreed to participate. Most of the participants were female (79.1%), the average age was 47 years and 15 years of work experience (Table 2).

Table 2.

Participants’ characteristics (N = 24).

Age: Mean (SD)	47.04 years (11.9)
Gender: Female, n (%)	19 (79.1)
Professional experience in PC
Mean (SD)	15.45 years (10.1)
Range	2–35 years
Healthcare setting/sector (%)
Hospice	(29.2)
Community services	(29.2)
PC units and/or PC team actively working in hospitals	(41.6)
Professional role, N (%)
Nurse	7 (29.2)
Nurse specialist	2 (8.4)
Physician	6 (25)
Anaesthetist	1 (4.2)
Psychologist	6 (25)
Physiotherapist	1 (4.2)
Spiritual support/counsellor	1 (4.2)

From the qualitative analysis process, the following themes emerged: (1) Managing end-of-life in COVID emergency wards, (2) awareness of ethical decision-making complexity and (3) Palliative care nurses’ ethical competence.

In the following paragraphs, themes are illustrated with the support of some participants’ quotes. Primarily, the quotes were selected among those more representative within each theme analysis. Secondarily, they have been selected in consideration of the variety of genres and professional figures involved.

Managing end-of-life in COVID emergency wards

The general and initial perception of the participants was that professionals involved in COVID wards possessed a misconception of PC as a health sector with nothing to do with emergencies. Conversely, several participants described emergency settings where the physicians assigned terminally ill COVID positive patients to the PC team for end-of-life care. However, PC management of symptoms and careful accompaniment of these patients had unexpected outcomes:

“Some dying patients admitted to Covid-units have come out of it simply because they have been treated with palliative care principles. Treating usual symptoms like shortness of breath, fever, cough, pain” Physician-1

“(…) we were deployed in the emergency department, and they expected from us (=PC team) that somehow we would help with the workload -they would never admit - (…) let’s say with those patients they could not spend energy on because they were too sick and compromised. On the other hand, it would be interesting if someone someday were to do the math (…) instead because it emerged that the PC team, at a certain point, cured and pulled out of the situation at least two or three patients. It was extraordinary! (…)” Nurse-1

According to some respondents, the PC team’s skills and expertise may have had much more value and appreciation during the first wave. Participants felt that physicians did not know how to manage the symptoms at the end-of-life and that, due to the emergency, they had to make quick decisions, including to not support adequately patients’ palliation. Specifically, it seemed that ED staff possessed little knowledge of how to manage death in general and this type of death in particular. Therefore, PC team supported the staff with end-of-life care for COVID patients, especially when dying happened quickly.

“(…) colleagues who came from critical areas to Covid-units went completely haywire (…) because people died very fast, and these colleagues were very touched and shocked by not being able to do anything because they always tend to resuscitate. (…) We (=PC nurses) understood the symptoms that could not lead to anything other than death. We, in those situations, quell the symptom, control the symptom, when in reality they (=ICU nurses) are always looking for a recovery (…).” Nurse-5

“(…) sometimes yes they (=patients) were somehow sedated, but sometimes not, that is, especially the younger ones, they (=ED team) tried to save them, even if in reality they (=patients) became oliguric (...) with clear signs of a terminal illness. In my opinion, I have seen too much obstinacy (…) in the first wave. (...) I would not justify a wrongful death. However, I remember that there was much panic. I have this memory of the ED staff doing things just to figure out what was the right thing to do. What if there was a PC team in the hospital?” Nurse-6

Especially in the first wave, there were no clinical and ethical guidelines, and the emergency medical team changed their approach quickly, often by trial and error. The strain of decisions and doubts about intubation or other resuscitating manoeuvres has also given rise to psychological trauma, and moral distress for the professionals involved too.^22,45

“But I think it was enormously difficult because you find yourself having to decide on a patient's life. Among other things, without knowing whether an intervention is effective. We did not have any studies that told us that if you intubate, some get along/through or not. Which prognostic factors tell you it will be good or bad? So it was all done in a hurry. So I realize I know anaesthetists who have a very heavy aftermath from that period.” Physician-7

Lastly, participants highlighted that the PC is a specific pathway and not something to activate a few hours before the death event. This aspect was strongly confirmed in the interviews after the second wave.

“(…) there is a wrong culture about palliative care. It always happens when the patient is dying right? Because when they think palliative, they think death. However, palliative care is not like that (…)” Physician-6.

“(...) in my opinion, we had an extraordinary competence to spend/provide/give. It is clear that it was a question of thinking about a new way of providing PC (…). Moreover, that was an interesting challenge, right? Because patients also died within two hours. We didn't have the time for a normal PC. However, it was a way to start thinking differently about end-of-life care. And we missed this chance. That's it. I have this great regret (...).” Psychologist-1

Awareness of ethical decision-making complexity in end-of-life care

Nurses and physicians reported several episodes during their deployment experience when their ethical skills and competence were put at the service of the professionals who worked on the front line. In addition, the PC team stimulated and supported ED professionals to face the ethical dilemmas raised by critical issues (e.g., intubation episode).

“(…) whether you are thinking about intubation … or not. (...) Having an expert (=PC team) there. (...) In decisions of this kind. It is clear that this speeds up the process, and (…) there is a shared responsibility that makes the difference” Psychologist-1

“(…) to help colleagues in the critical area to understand whom to resuscitate (...). Therefore, things should have helped in the decisions and guided the practice. Many (=doctors) are left with big unresolved dilemmas still today. I think about whom to intubate or not. (...) because the discussion is much broader (…)” Nurse-5

The importance of ethical decision-making as a shared process requiring multiple actors’ consent and participation was highlighted but the PC team. Specifically, several reflections arose about those settings with no multi-professional team. Therefore, the physician made decisions alone without any prompt feedback from the patient’s relatives (because of the COVID policy) or nurses who can act as patients’ advocates.

“I must say that in a Hospice, thanks to the fact that there is multidisciplinary discussion, it is possible to carry on ethical discussions. Instead, we tried in the Covid unit, but I realized that it was the doctor who decided alone!” Nurse-6

“(…) it would have been good to untie/free anaesthetists or ICU staff from having to assist people who inevitably were going to die. (...) to avoid the extreme frustration that many of them had in assisting the people who, despite the treatments, the attention and everything, were not going to make it. A PC team would have helped and taken over.” Physiotherapist-1.

Another aspect was the medical staff recruited in the EDs and COVID units, which often belonged to other specialities or were still attending a training programme. This meant that the ethical debate could not be addressed correctly due to the doctors’ and other professionals’ lack of experience or previous exposure to a terminal and life-threatening condition.

“I remember that, especially in the first wave, there were dermatologists, cardiologists and specialists. (...) they were competent (…) good but not right for the job and not right for the type of patient, also because it was foreseeable that there would be ethical discussions (…).” Nurse-6.

Some interviewees commented that to practice ethical decision-making, one must have a habit of reflecting and sharing professional issues within the team. However, it also emerged that perhaps some medical disciplines are less used to ethical decision-making because they do not deal with death so often. Moreover, some medical disciplines mainly deal with technical – more task-orientated – aspects of health, whereas they need to be more in touch with the humanistic facets of the disease.

“A (…) lesson (=from the first wave) could be about bioethics, that is, the individual is part of a bio-psycho-social system. (...) Here perhaps we needed to look more at the whole picture, not just at purely technical aspects, as many (=healthcare professions) did instead” Anaesthetist-1.

“(…) there was no senior doctor, so they were junior anaesthetists (...) they didn't want to make decisions of a certain type. This was a problem. (...) The thing is (…) we treat people, and we do not treat objects, so (...) you cannot leave certain responsibilities to trainees. (...) Moreover, when in doubt, I have always seen action without stopping and trying to reflect for a moment”. Nurse-3.

During Covid, especially in the first wave, there was a lack of clinical and ethical guidelines. Therefore, the essential information to support the clinician (often junior anaesthetists) to make ethically sensible decisions needed to be included. The PC team showed a stronger sense of how to act in end-of-life care, even in an emergency.

“(…) you cannot think of dealing with the end-of-life without having in mind bioethics principles. I mean, if you do not consider the human being, (...) then you go back to being a technician. Moreover, stop being a PC physician at that point. In short, it is essential to identify what the patient’s will is, what the relational context is or what their idea of health is, their idea of wellbeing, what the decisions for their self-determination are.” Physician-7.

A psychologist referred to ethics as a science and the duty of those who provide palliative care to consider the legal aspects. The medical and health professions must be aware of ethical choices and legal implications; thus, to what extent the law supports professionals’ clinical decisions, or does it provide what could be defined as an excessive medical treatment?

“Bioethics is a science, and it partially belongs to law. Therefore, you also have some guidance; you feel very at ease with PC because you know that you cannot do certain things anymore (= resuscitate at all costs), so paradoxically, you do not even have a choice. That is, at a certain point, it is better for the patient, bioethics tells you so, and then you have to stop (=treatments). And what follows is the serenity of the (= healthcare) Professional who goes to relieve the person, to make them feel better” Psychologist-6

Palliative care nurses’ ethical competence and support

PC nurses prompted profound reflections among the ED team on adopting caution and improving the involvement of the family members in their beloved’ end-of-life care decisions. This aspect has helped medical and healthcare staff to emphasise and invest in caring and patients’ autonomy of decisions rather than solely on technical interventions.

“(…) at the beginning, it was clear, the others (=healthcare professionals) thought: 'PC nurses have arrived! And they will relieve us from assisting the dying patients'. However, in the end, it emerged that PC nurses could cure the person. Moreover, because they (= PC nurses) are probably able to have a complete vision of the person, right? Above all, PC nurses are used to talking to people in tough situations and picking up many signals, which probably the other specialists are not” Nurse-1.

When they could, PC nurses safeguarded ethical values for a dignified death to support physicians’ decisions. Such a task was eased by PC nurses’ habit of valuing and participating in the debate providing important information about patients and their stories or will to decide to forgo more treatments or to withdraw.

“(…) PC nurses were not just essential but much more! They just told you millions of things. Furthermore, for example, the colleagues of the wards from which these patients came. They gave us much information about patients and whether we needed to treat them aggressively or leave them (…).” PC Anesthetist-1.

“(…) to help make certain decisions; however, you need nurses who have experience in the field of decision-making and, above all, in the field of terminal illness because, in any case, it is not easy. Especially when you have a patient who is perhaps in sedation (…) ” Nurse-2

On the other hand, some reported episodes of less attention to ethical issues by the emergency medical staff.

“I remember that I once said to a doctor: "But do you know that there is a law that, in the event of a bad prognosis, allows you, as a professional, to stop?” and he looked at me weirdly. (…) They do not know that there are good prognostic indexes of a certain kind. However, if there are any signs of terminal illness or even if they try to think that the patient will never recover. On the contrary, they can stop. (…)I honestly have not seen ethical discussions, but many could have been done it” Nurse-6

An essential role of PC nurses was to offer their relational expertise and engage EDs in maintaining effective communication and relationship standards with relatives (who were outside of the ED or on the phone) and colleagues. Participants reported numerous episodes of nurses who, despite the protections, were able to contact and help patients. For example, PC nurses helped with symptom management and specific solutions in the dying COVID positive patient; sometimes, they transgressed rules to support families and dying patients.

“And we have gladly transgressed the rules on the distancing of family members. We have always let a family member enter (= for dying patients). In addition, we reinvented ourselves a bit in terms of covering new roles. In addition to being PC nurses, we found ourselves filling some gaps and being closer to the patients (…) as people.” Nurse-2

Nurses with PC experience supported fellow emergency nurses who experienced the horror of the first wave. Thus, they helped them to ease the moral dilemma related to care for patients in end-of-life conditions and the feeling of helplessness to care for so many deaths.¹⁹

“We asked for help from our PC nurse, useful, in times of Covid, as a counsellor to support family members, to contact family members in the days of end-of-life" Psychologist-2.

“We (=PC nurses) were available to support colleagues in dealing with this high number and frequency of deaths. (…) it is not that one brag about it, but we are used to working with death. It is a different perspective compared to those who work in other departments where, however, alongside those who die, it is clear that there are also all those who survive and go home (…).” Nurse-2

Discussion

This work outlined that emergency wards’ most challenging ethical issues, such as withholding or withdrawing treatment, were faced daily during COVID-19 pandemic.⁴⁶ Our research also confirmed the important role of the PC team in this clinical setting, especially during emergencies.^47,48 Moreover, it highlighted that ethics and palliative care should be a longitudinal competence integrated by all healthcare professionals, regardless of their specific area of knowledge, emphasising end-of-life care.^47,48 At the beginning of the emergency, many physicians needed to prepare or show more knowledge of ethical and palliative care guidelines or other means of support for end-of-life care. However, palliative care science addressed these topics to support end-of-life care decisions and carried out perpetual work on the standardisation of practice.^13,48 In these pandemic phases, there was more action and less reflection; this was also due to ED professionals' tendency to intervene immediately.⁴⁹

In many cases, the PC team who worked in emergency settings showed more coping mechanisms and reduced emotional distress in managing end-of-life experiences than their colleagues from other wards and specialities.^50,51 This also is reflected in the ability of PC teams to manage ethical conflicts regarding end-of-life treatment decisions of the most critical COVID patients.²⁶ PC nurses' self-care and self-compassion are fundamental coping strategies crucial to supporting their professional ethical and moral distress.⁵⁰

Many participants emphasised that PC should be initiated earlier and EDs are specific environments where all staff and patients can benefit from such a process. Furthermore, the need for a palliative care team within ED applies to the Italian context and other European countries.⁵² In fact, the support of PC team within ED settings is still very rare or not fully implemented yet in several European countries and the UK too.^53–55 Therefore, a cultural change is needed, and the experience during the two pandemic waves could trigger the willingness to integrate elements of palliation into emergency settings.^49,56,57

The pandemic in Italy, especially in the first wave, with many poor diagnoses, challenged medicine’s purposes, suggesting that health professionals could not work on traditional healing anymore^48,58 but should embrace a different approach. A PC team could have helped to activate such reflection on the failed mission of health sciences.^59,60 Schön⁶¹ described a high, hard ground where practitioners could use research-based theory and technique effectively and a swampy lowland where situations are confusing ‘messes’ without technical solutions. He, therefore, highlighted that the fundamental problems of most significant human concern are in the swamp lowland and not in the efficient and rational high grounds. Within the context of this study, the swampy lowlands were highly represented by the emergency settings where end-of-life COVID patients stayed. Emergency and PC teams’ differences arise strongly when curing is not possible anymore, the concept of quantity and interventions needs to be abandoned,^62,63 and the focus becomes improving the quality of life of patients and families, getting closer to the human experience of sufferance.

This study also highlighted PC professionals’ different ethical perspectives related to their experienced professional roles. While physicians seemed more focused on professional conduct or decision-making, nurses emerged as relational and supportive figures for ED colleagues and peers.⁶⁴ However, PC specialist nurses supported and encouraged colleagues to integrate relations and dialogue within their rare meetings with patients and relatives.^64,65 In several surveys, many healthcare providers have stated that they struggled to have end-of-life discussions with patients and family members.¹¹ PC nurses showed that end-of-life care combines clinical and ethical skills adapted creatively to the new circumstances and that all nurses could develop such a skill set.⁶⁶

PC models support shared decision-making based on a person-centred model, and emergency staff found it difficult to embrace it. This might be due to EDs being places where this ethical discussion is usually minimal and where there is more attention to quick-fix and fast-paced interventions.^22,67 In addition, although nurses in the emergency teams possess a high level of autonomy, they lack the habit of discussing end-of-life and still have a mono-professional approach to decision-making.^67–69

PC nurses possess implicit ethical competence, providing patient-centred, holistic care across the continuum of care and therefore are the ideal professionals to supplement care in a clinical setting where additional staff are needed.^62,70 These skills are also transferable to health workers planning and preparing emergency and public health interventions. In fact, using nursing skills in triage and assessment and integrating the domains of palliative care can provide a comprehensive framework for structuring ethically sound emergency operations during a pandemic.⁷⁰

Related to this, the study uncovers how fundamental is the educational aspect, particularly for nursing ethics and legal issues and how this could have supported ED staff in difficult decision-making, thus avoiding subsequent psychological trauma.²² However, in line with a few research conducted during a pandemic, our study highlighted that nurses who work in ethically supportive environments experience lower levels of moral distress.^45,50 In addition, nurses’ exercise of ethical reasoning could help build their coping strategies to face moral and ethical dilemmas.^18,19,21

Lastly, end-of-life management during COVID unveiled PC health professionals’ moral duty to prepare, educate, and guide their colleagues working in other disciplines, especially in emergency wards.^47,70 The PC model of care could support all health professionals who struggle to understand the end-of-life decision-making process. Moreover, this process should be based on a broader consensus and wider perspectives and not solely on short-term mortality indicators (like scales of organ failure to predict mortality). Therefore, it should also consider patients’ personal needs and expectations.⁷¹

Study limitations

Our study limitations concerned the small number of interviews conducted and the participants' recruitment. The small-scale study was due to the difficulty of contacting and meeting health professionals during such an intense and terrible period, especially in the northern Italian regions. Moreover, due to the resurgence of COVID, the interviews were carried out in a different planned period. However, due to PC professionals’ difficulties finding time to collaborate because of their heavy work patterns, the interviews were interrupted and conducted after the first and the second pandemic wave. This time lag entailed professionals (and us) changing our vision on the pandemic, which has passed from an unknown and unexpected to an emergency to be managed with more reflexivity. Another limitation concerns remote interviews. An interpersonal face-to-face relationship and possibly at the workplace might have helped contextualise the interviewees’ experiences better and enriched the conversations.

Conclusions

This study captured a specific moment in the Italian healthcare system when PC professionals’ expertise and ethically sound practice could have supported such a pandemic emergency. The PC team highlighted concerns and difficulties in dealing with the nursing and medical staff’s need for ethical awareness. Nevertheless, palliative care nurses showed coping strategies and the ability to support staff due to their familiarity with an ethically sound end-of-life philosophy of care. This aspect has significant potential for everyday care practice, but it can also be considered as a learning for future emergencies. Lastly, this study’s results pointed out two urgent societal and healthcare needs: the recognition of the PC providers’ role in end-of-life care and ethical conflict management in all the different clinical contexts (in particular in emergency settings) and the development of longitudinal educational strategies for early palliative care interventions.

Footnotes

Acknowledgements

The authors sincerely appreciate all the palliative care professionals who contributed to this study sharing their precious experience and insights.

Author contributions

All authors listed meet the authorship criteria and all authors are in agreement with the manuscript. All authors have actively participated into the process of design, data collection, data analysis, writing and preparation of this manuscript.

Declaration of conflicting interests

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) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Enrico De Luca

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