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Editorial

Capacitating relatives of incapacitated patients

Baumann, Antoine; Sergio, Marie; Duranteau, Jacques; Claudot, Frédérique

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European Journal of Anaesthesiology: February 2021 - Volume 38 - Issue 2 - p 103-105
doi: 10.1097/EJA.0000000000001291
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In anaesthesia and intensive care medicine, more than in many other medical specialities, physicians, patients and their relatives are often faced with life-threatening situations requiring difficult decisions. These decisions may involve challenging ethical issues such as the futility of treatments and end of life or postmortem organ donation. The emotional and stressful context and the possible conflicts of values can lead to challenging situations, ethical dilemmas, great suffering and conflicts difficult to manage.

Over the past decades the relationship between physicians and patients has evolved from paternalism through individual patient autonomy and patient-centred care to a patient and family-centred approach.1 The role of the family in reflection on the patient's values and in the decision-making process has grown over time because of the recognised intimate knowledge of the patient by family members.

Substituted autonomy

When the patient has become incapacitated and decisions must be made, the situation becomes very demanding for the relatives in the context of their emotional distress. Depending on local regulations and situations, relatives could be asked to make or share in decisions, or simply to understand and approve decisions. Whatever the case, the family often feel naturally entitled to exert a kind of substituted autonomy – that is substituted reflection, judgement and decision-making.2

A private reflection

Of course, the relatives’ reflections have to be taken into consideration: the causes and reasons for their opinions and decisions are theirs, and they are not accountable to us and we are not entitled to question them. But that does not mean that we have to leave them alone with their reflection in the tragic situations they have to face. Physicians can suggest that relatives meet ‘professional helpers’: such helpers would assist relatives in their reflections and decision-making process, with the aim of alleviating their psychological and moral distress and providing them more satisfaction and peace of mind in the long term.3 Furthermore, speaking of the role of the relatives is also speaking of their capacity and their moral responsibility.

Ethical challenges

Relatives need to understand the situation, cope with stress, grasp the ethical issues and have as clear as possible ideas. The ideal goal for them is to correctly continue the story of the person and often their own. But because decision-making involves not only rational reasons but also emotions, providing information only is not sufficient.4,5 Neither is it sufficient to provide psychological help alone.6 Indeed, thinking, judging and deciding for a close relative in a critical condition is very onerous and traumatic, with a high risk of posttraumatic stress disorder.7,8 Facing a dire, complex life-threatening situation, most of us are not psychologically and morally equipped to cope with our emotions and distress at the same time, nor grasp and manage the different complex ethical issues involved. Our capacity to genuinely think and speak on behalf of the incapacitated person can be severely impaired. In addition substituted decision making may be further complicated by cognitive biases, such as the ‘hot–cold empathy gap,’ in which people under no stress do not appreciate how others would think, feel and behave in stressful situations.9 Indeed, the relevance of relatives’ substituted decision-making has been called into question because, despite the relatives’ best intentions, such decision-making lacks accuracy.10,11 On the other hand, some authors have pointed out that physicians often offer no guidance, or the guidance is incomplete and sometimes even inappropriate.12 In practice, quite often at some time after the events, relatives are dissatisfied regarding their substituted-autonomy decisions.13

The role of emotions

The role of emotions in human reflection and decision-making has been acknowledged since Antiquity. More than 2000 years ago Aristotle pointed out that emotions are a source of ethical questioning14 and are also both a driving force and an impediment to answer such questions. One of the risks for helpless relatives is what ancient Greeks called akrasia – the state of acting against one's better judgement. Thus one may initially judge an action to be the best course of action but fail to think and act accordingly because of conflicting emotions and unresolved moral dilemmas, thus regretting a decision at a later date.3,15,16 In the same way, the philosopher Baruch Spinoza has underlined the fact that human beings are often ignorant of the causes by which their choices are determined, and he held that emotions are the necessary causes of our actions.17 These views have since been confirmed by neuroscience.18 Moreover, it seems that both individual and collective morals are psychologically loaded.19 Wallwork20 sees the understanding of ethics primarily as psychological, and highlighted the links between moral psychology, moral philosophy and normative ethics at the individual and collective level. As Callahan21 wrote 30 years ago, ‘Emotion and reason tutor and monitor at the same time themselves and each other. (…) The ideal goal is to come to an ethical decision through a personal equilibrium in which emotion and reason are both activated and in accord.’ It has been noted for some time that emotionally charged concerns are a frequent trigger for ethical consultation requests.22

So, ethics and psychology are intrinsically entangled and inseparable, and it could be hypothesised that improving one can improve the other. It is likely that psychological comfort can help the family to have a clearer ethical analysis of the issues, and to develop ideas as to what should be done and, equally, clear ethical ideas can bring psychological comfort.

In summary, these situations require simultaneously coping with acute emotional stress, avoiding cognitive biases and difficult moral deliberations, all of which calls for simultaneous psychological and ethical support.

A dual support

In light of the above analysis it appears that, besides psychological support, ethical support could be helpful for relatives of incapacitated patients. Since they are intertwined, this psychological and ethical support should not be dissociated, but should be conducted simultaneously by one person. The goal for relatives is to gain more serenity and reach a satisfactory, time-proof decision that will not be regretted later. Not only should the support aim to relieve psychological suffering and help the relatives cope with stress, but it should also help them to think about what is best to do. On the psychological side, it seems important to help the relatives acquire a kind of ‘meta-knowledge’ by achieving an understanding of their own emotions and how these affect their reflection process and their approach to making a decision. Regarding the ethical side, in their reflection we have to help the relatives to take on board ethical issues they may not have considered such as normative ethics or ethics of responsibility.23 The ultimate objective for relatives is to succeed in taking a step back and to reach a satisfactory and time-proof position, that they will not regret later.

Addressing relatives’ emotions first makes the helping process more respectful and more efficient because it follows their most natural way of dealing with moral issues.24 This psycho-ethical support should be dialogical and interactive.23 A maieutic effect could then emerge, which would help both the relatives and the physicians to become more aware of the wider ethical issues and their determinants: to analyse, verbalise and share these with each other, thus giving birth to new approaches and finally to more authentic and meaningful decisions. Support cannot be reduced to mere help with reflective ethics: it should encompass a concise ‘theoretical’ part related to the different aspects of ethics.23

In need of intensive care

Simultaneously addressing the psychological and ethical needs of the relatives of incapacitated patients while maintaining a nondogmatic manner respectful of universal values, is a difficult challenge at the local as well collective and organisational level. Norms, recommendations and an educational framework are lacking. A review of the literature regarding theories and clinical practices could be of interest, especially to study whether and how psychological and ethical supports are merged in theoretical approaches as well as in clinical practice. The acceptability and the clinical relevance of such a support could be assessed by asking relatives retrospectively whether in hindsight an ethical help would have helped them.

The question of core competencies in ethics for anaesthesia and intensive care professionals and for those who will provide such a support should also be reflected.25

Acknowledgements relating to this article

Assistance with the editorial: Ian F. Russel.

Financial support and sponsorship: none.

Conflicts of interest: none.

Note from the editor: this article was checked and accepted by the Editors, but was not sent for external peer-review.

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