Welcome to this special issue of the Annals of Translational Medicine focusing on the ethical questions surrounding intensive care.
It is probably fair to say that most people never really think about the possibility that they may be admitted to an intensive care unit (ICU) in their life. Accordingly, the majority of ordinary people are not particularly knowledgeable about what exactly goes on in an ICU or what kind of care is dispensed there. In this context, for an ordinary person who experiences a serious health event requiring admission to the ICU, it can be an overwhelming, distressing experience. The environment is intimidating, the patient and/or family are bombarded with huge volumes of information that they don’t necessarily understand, or to which they are not receptive due to their stress about the sudden illness of a family member. This can initiate a vicious circle of poor knowledge, lack of information, difficult communication, which in turn can have repercussions for the healthcare team, who find the interactions difficult, and therefore more stressful.
This vicious circle is avoidable. However, the spectrum of ethical issues that arise surrounding intensive care is wide, and many of the questions are not addressed systematically in routine practice. Many of them are new notions for patients and physicians alike. Through a range of papers exploring these different issues, this issue aims to focus attention on the questions that surround intensive care, and how they can best be addressed in order to optimize the whole ICU experience, starting before admission, and continuing up to discharge and beyond.
Long before a patient is actually admitted to the ICU, the first ethical issues requiring reflection and decision-making arise. For patients with chronic diseases, whose evolution will inevitably and predictably be marked by stepwise deteriorations, it is not unreasonable to discuss the question of whether the patient wants to be admitted to the ICU when the time comes. In this regard, advance care planning, a process in which the patient is encouraged to discuss and identify his/her values, beliefs and life goals, especially the healthcare trajectory he/she wishes to follow, can be particularly useful. For patients who suffer from chronic disease, it is important to discuss the possibility of ICU admission in advance, so that the care dispensed when the time comes will be in line with the patient’s desires.
Many people suffer from acute events, such as road traffic accidents or neurovascular events, which lead them to the ICU without warning. These situations raise a different set of questions about the appropriateness of care: how can decisions be made in emergency situations, who should be consulted, what care should be delivered and when should care be withdrawn or withheld… The question of who should be admitted to the ICU, and in which conditions is largely discussed in this issue, as is the question of who should NOT be admitted, and how this non-admission can be justified. Thus, anticipating situations likely to lead to a need for ICU admission ensures that full, transparent and honest information is available, guaranteeing full exercise of the patient’s autonomy.
The reflection on the issues relating to admission (or not) already cover a large part of the ethical ground, but once the patient is admitted and present in the ICU, a new set of questions quickly come forward. The ICU patient is vulnerable, and this vulnerability has repercussions on the caregivers caring for the patients who also bear a certain burden of suffering that needs to be addressed. In the face of an acute life-threatening event, family members are usually distressed and anxious, and overwhelmed by the ICU environment, and this can render communication about the patient’s case difficult for all involved. As detailed in the relevant articles in this issue relating to ACP, collegial decision-making and the role of the family, good communication is the cornerstone of what might be termed “optimal ICU practice”, and the involvement of the family in decisions relating to their loved one, taking into account the patient’s wishes, where possible, as expressed either directly or indirectly, largely contributes to family satisfaction and renders the ICU experience less traumatic for all involved.
Performing clinical research in the ICU environment requires a delicate balance between the desire to advance knowledge and the greater good, on the one hand, and the respect of the patient’s autonomy and wishes, on the other hand. Unfortunately, many patients are not decisionally capable at their ICU admission, because of their severe clinical status or because they are sedated and/or intubated. Clearly, in these conditions, obtaining consent for research can be difficult, not to say impossible. Asking the family for their opinion is possible, but supposes firstly that the family is present, and secondly, that despite the stress of the moment, they will be able to integrate detailed clinical information and make an informed decision on their loved one’s behalf. Add to this the fact that often, families confuse propositions for research with opportunities for care. In this context, clinical research, in all its forms, is therefore fraught with a range of ethical issues that are discussed in greater detail in this issue.
Mortality rates are high in ICU patients; this is a fundamental truth in intensive and critical care, largely due to the severity of the pathologies treated. Unfortunately, in this context, the question of organ donorship arises regularly, and represents another major issue that is addressed by a specific article in this issue. Again, this issue is intricately linked with the delivery (or withdrawal) of intensive care, and like the other issues addressed here, requires open communication and informed reflection, for the patient, the family and the health professionals.
Overall, the ICU experience is not plain sailing all the way – not for the patient, not for the patient’s family, not for the healthcare professionals. Each protagonist faces their own specific lot of challenges, and their responses will be conditioned by their different points of view and objectives. Ideally, we should all be striving towards the same goal, which is to optimize the ICU experience for the patient and their entourage, while at the same time ensuring that the health professionals are able to exercise their profession to the best of their ability, in an appropriate environment. This is no easy feat! If, after reading all the articles in this special issue, you feel more confused and have more questions than before, don’t worry—it’s a good sign, at least it means that you are thinking about these issues. If the articles in this issue can prompt reflection and consideration of the innumerable ethical issues surrounding the ICU, then the objective of this special issue will have been met, by making some small contribution to advancing the debate in this area.
Thanks for your interest, and enjoy!