Discussion

Considering professionals’ experiences in the week prior to questionnaire completion, the most common ethical decision made by physicians and nurses working in Portuguese ICUs was with regard to information disclosure to patients’ relatives. This is not surprising, given that in the ICU the patient is usually unconscious and/or not competent to give consent, so that the decision making shifts to the family. Communication plays a central role in IC. Indeed, ICU caregivers should seek to develop collaborative relationships with their patients’ family members, based on an open exchange of information and aimed at helping them cope with their distress and allowing them to speak for the patient if necessary. The need for family-centred care and for good communication among the patient–family–caregiver is also highlighted by Azoulay et al14 ,15 and Davidson.16

We also found that withholding treatments was another ethical decision mentioned by the professionals in our study, as well as the need to withdraw treatments. This is in accordance with other studies reporting that considerations whether to withhold or withdraw therapy are common issues in ICUs, as 35%–90% of deaths in an ICU occur after therapy has either been withheld or withdrawn.17–20

When comparing the responses of physicians and nurses working in Portuguese ICUs, regarding the need to proceed to ethical decisions, a significant difference was found, namely, a higher number of decisions being taken by physicians. The fact that so many more physicians than nurses volunteered the information that they need to make ethical decisions may reflect that these decisions seem routine. But, we must also take into account that many nurses may still feel uninvolved in the ethical decision making process. In fact, according to Ho et al21 and Meltzer and Huckabay,22 nurses are often excluded from the end-of-life decision process. This is in line with a study regarding nurses’ involvement in ethical decision making processes by Jensen et al,23 which concluded that although most of the participant nurses considered that they should be involved, the reality was different; in fact, in half of the situations regarding withholding or withdrawing therapy, involvement did not occur. In the same study, only about half of intensivists considered that nurses should be involved in end-of-life decisions. In line with these is also the report of discrepant attitudes to teamwork among critical care nurses and physicians working in IC.24 It is interesting to note that, as in our research, in a qualitative study whose aim was to identify and compare the ethical problems perceived by physicians and nurses in ICUs, the physicians were the ones who were also more concerned with withholding and withdrawing treatments.9

Families’ truth disclosure considering diagnosis and prognosis was the most frequent ethical decision taken by both IC professionals. However, it was the physicians whose families’ truth disclosure was significantly the more frequent. It is easy to understand these differences between nurses and physicians concerning information given to the patient and his/her relatives. We must take into account the professional role of each, since the task of providing family members with appropriate, clear and compassionate information is an ICU physician's responsibility, and for the most part nurses are not involved.14

However, at first sight the existence of a significant difference between physicians and nurses concerning withholding treatments rather than withdrawing therapy is not so obvious. Indeed, no significant differences were found between nurses and physicians concerning the decision to withdraw treatments and to proceed to terminal sedation, whereas a significant one was found regarding the decision to withhold therapy, with a higher number of decisions being made by physicians (figure 1).

The differences between withdrawing (stopping established treatment) and withholding (not starting treatment) has stirred controversy in terms of both philosophical and religious theory. There is for many a prima facie difference, while for others there is the feeling that they are not different. There is a sense that there is something more important in stopping therapy once started than not starting at all. The acts are one of omission rather than commission. The act of not starting is one of a passive nature, whereas that of withdrawing is active in nature.25 Other reports raise the question of moral equivalence between withholding and withdrawing therapy, denoting that the ‘Equivalence Thesis’ is not a universal law of bioethics.26 Indeed, in 28 of the 49 guidance documents that address the question of ethical equivalence of withholding versus withdrawing life support from acutely ill patients, it is stated that they are ethically or legally equivalent acts. Even so, over half of these documents qualify this position with the suggestion that there are important psychological or social differences between them. We may consider, in line with Gedge et al,27 that it may be related to the fact that in withholding care physicians typically withhold information about the interventions judged too futile. They thus retain a greater decision making burden (and power) and do not have such strong obligations to secure consent from the patient or proxies or even members of the team. This is in accordance with the results obtained in our study in which a higher number of decisions to withhold therapy was documented in physicians than nurses. By contrast, in cases where care is withdrawn, there is a much more obvious imperative for the physician to involve patients (or proxies) and nurses in decisions, and to share information even when continued life support is futile. This emphasises our findings with regard to the similar results obtained from both professionals concerning the decision to withdraw treatments.

Organ donation and religious issues were the least frequently reported ethical decisions. This may be due to the fact that many professionals do not view those as ethical questions nor do they take into consideration patients’ or their families’ spiritual needs during the period of end-of-life care, which for several authors constitute an essential dimension. Being able to provide patient-centred care in its most holistic sense, respecting all aspects of the patients’ needs, including cultural and religious, should be a top priority for people involved in the healthcare system, whether at the bedside or the ones responsible for units’ planning.28

Additional factors, namely socio-demographic and professional, may play a role in the lack of involvement of nurses in ethical decision making. Although the number of years of practice in IC is similar for both sets of professionals, nurses are younger, having fewer years of professional experience and less frequent postgraduate training in IC. We did not find any association between education level and burnout. In fact, in spite of a lack of postgraduate training in IC, no association was found between burnout and postgraduate training in IC.

However, we found an association between postgraduate training in IC and the need to make ethical decisions, the professionals who have received that training being the ones who recognise a greater need to make ethical decisions. Furthermore, we did not explore the types of ethical decisions made and their association with the educational level. However, as one paper alone cannot answer every question, it will be interesting to address this in future research.

This lack of postgraduate training also highlights the importance of staff empowerment, as do previous studies. Personal knowledge and skills as well as a supporting atmosphere and good teamwork have to be fostered and encouraged by supervisors in order to increase staff experiences of empowerment.29 As nurses should make an important contribution to end-of-life decisions and care, it is imperative that they are supported in this role and in their responsibilities for continuing to provide care during withholding/withdrawal.30

In spite of many studies concerning ethical decisions in ICUs, few of them consider the effects of those decisions on the professionals concerned. IC staff are repeatedly exposed to demanding situations and encounters with ethical and end-of-life issues which are some of the most stressful experiences for healthcare professionals and which can result in stress and burnout symptoms. In the present study, we found an association between some of the above types of ethical decision making and burnout. A positive association was found between ethical decision making and burnout in nurses, namely, between burnout and the need to withdraw treatments, to withhold treatments and to proceed to a terminal sedation. The same was not the case with the physicians, where no association was found.

When comparing burnout subdimensions in both professionals some differences appear, namely, no association between ethical decisions and burnout subdimensions for physicians. However, a positive association was identified in nurses between EE and the need to proceed to terminal sedation. Hence we found that EE is the burnout subdimension that is most affected by the ethical decision making process. Similar results were observed in a study among critical care nurses in which the frequency of moral distress situations that are perceived as futile or non-beneficial to their patients was significantly related to the experience of EE, a main component of burnout.22 Furthermore, the nurses may experience high rates of EE due to the nature of the nurse–patient relationship, as nurses spend more time with patients and may build strong emotional bonds.

When we compared professionals, we found that physicians are more involved in the ethical decision making at end of life, and so they make a greater number of ethical decisions than nurses. In contrast, nurses are more affected by the ethical process than physicians, as they show higher EE and lower PPA. We consider, in accordance with the results of this study, that as nurses are less involved in the ethical decision making process they have greater burnout levels, especially in its subdimension EE and PPA. However, the fact that it is the nurses who spend more time at the bedside in ICUs and are in more permanent contact with patients and families can also make a contribution to this. So these results, once more, highlight the need for nurses’ enrolment in the ethical decision making process regarding end-of-life care as a measure for reducing the risk of burnout. Yet, in this study, it is not possible to distinguish whether this is due to nurses being less involved in, or excluded from or less able to control ethical decision making. We address this point as a limitation that can be further explored in qualitatively designed future research.

In ICUs, death occurs after a medical decision to limit treatment for a great majority of patients. In this context, taking care of the patient and his/her relatives is ethically, practically and emotionally complex. End of life is a well known source of conflict, burnout and stress among medical and nursing teams in the ICU.31 So, it is also fundamental to take care of the professionals in this setting. In the present study, an association was found between burnout and conflicts, yet we did not explore the nature, kind or source of conflicts that pertain to end-of-life issues. This could be further explored in a future study.

Some authors suggested that burnout can be reduced by an intensive communication strategy that brings about quicker end-of-life decision making in the ICU. Quenot and colleagues state that personal accomplishment is increased through measures that help to give a meaning for work, namely, through intensive communication strategies adopted by healthcare teams.32 Our results underline that the need to make ethical decisions, by itself, and the way in which the ethical decisions were taken, may play a major role in the increase in burnout. When ethical issues were presented, if the process of decision were taken without a necessary ethical deliberation and without the right involvement of all the team this could have a negative impact among the professionals. Further studies are needed concerning the association of burnout with the timing and ways of switching from ‘aggressive’ to ‘palliative’ treatment at the end of life, as well as workplace strategies and team approaches to ethical decision making and end-of life care.

The strengths of this study are that it has a prospective multi-sited design, which includes a variety of different ICUs, and a considerable number of participants (as evidenced by the high response rate) who constitute professionals (nurses and physicians) involved in decision making. It also includes the use of standardised measures (MBI).

One of the main weaknesses of the study was that the survey was not conducted countrywide, but only among Northern Portuguese IC professionals. This means that the results cannot be generalised for the entire country.

As there are major cultural differences in ethical decision making relating to end-of-life care, the results are not necessarily transferable to other countries. However, the associations between burnout and the ethical decisions made by IC professionals should be taken into account mainly in the case of nurses in order to promote measures that improve professionals’ experiences in those settings and to prevent burnout.