With the on-going advancements in life-sustaining therapies, we must increasingly ask ourselves not only “What can we do?”, but rather “What should we do?”. The use of life-sustaining therapies becomes a balance of the burdens associated with their use, their benefits, and the potential to succeed. With the shift from medical paternalism to a model of shared decision-making, this would mean involving the patients themselves. However, in critically ill or injured patients that luxury is absent most of the time, with patients incapacitated and unable to inform us of their treatment wishes. In these scenarios we have to act in the patient’s “best interests” and use surrogates to inform our decision making, but in doing so we can confound the situation as both we and other interested parties may project their own biases, agendas, and needs into the conversation. We therefore examine here the role of families in end-of-life decision making, their presence during attempted resuscitation, the problems and pitfalls that may arise in withdrawal of life-sustaining support, and the role of the courts and perhaps more importantly mediation when differences and difficulties arise.
Two aspects of the intra-hospital response to emergencies are much debated. One is the role of the intensive care-based medical emergency team (MET) in stopping futile or harmful treatment; for instance, cardiopulmonary resuscitation attempts in patients with terminal conditions. This can happen for several reasons, not necessarily linked to family pressure. But it is a difficult task, especially for the MET physician who, not knowing the patient, has to decide what to do in a short period of time.
Since the MET physician frequently attends patients with end-of-life issues, it is important that training reflects these aspects. While the primary specialist may not recognise or accept that the patient is dying, the MET physician, as an outside resource, can help to integrate palliative care into the context.
Another much debated issue is whether family members should be present during resuscitation procedures. This is a complex ethical dilemma with many competing interests at stake. On one hand stands the autonomous rights of family members wishing to be close to their loved one in time of crisis, and on the other hand the existence of potential risks involved for the patient, the family members, as well as the hospital staff. We need explicit protocols and training regarding this topic. Moreover, it is necessary to have dedicated personnel present as family liaison, whose role is to guide and counsel family members through the process, reducing possible interference with the resuscitation, psychological trauma, and medico-legal repercussions.
Who should decide on which ICU treatment is appropriate for an individual patient? Over the last few years, when disagreement arose between patient/family and the treating clinicians it appears to be more common to seek the Court’s opinion, at least in the UK, and maybe also other European countries. It may represent a change in attitudes towards healthcare. When litigation occurs, the Courts seem to prefer the family’s evidence to that of healthcare professionals. An explanation may be that the Court considers that the family/friends have known the patient over a long time, whereas the health professional has, usually, only known the patient for a matter of months.
What, therefore, should we do? A full and frank discussion must occur when misunderstandings start. It is also important not to appear to conflate “best interests” involving limitation of treatment with either resources allocation decisions or the professional’s own ethical stance. Instead of Court, one should propose mediation. This can be done informally, perhaps by getting another clinician within the institution to act as an “honest broker”. If this fails then a formal mediation process can be initiated with legal representation on both sides. Mediation costs a great deal less than going to Court and can preserve the relationship between the clinical team and their patient/representatives, which can otherwise be severely damaged by the rigors of Court proceedings. A time to talk, not litigate?