Hilton, Andrew K.a; Bellomo, Rinaldoa,b
aDepartment of Intensive Care, Alfred Hospital
bAustralian and New Zealand Intensive Care Research Centre, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
Correspondence to Rinaldo Bellomo, Australian and New Zealand Intensive Care Research Centre, School of Public Health and Preventive Medicine, Monash University, Alfred Hospital Campus, Commercial Road, Melbourne, Victoria, Australia. Tel: +61 3 9496 5992; fax: +61 3 9496 3932; e-mail: Rinaldo.firstname.lastname@example.org
Intensivists are in a unique position to improve nosocomial end-of-life care (EOLC). They understand the key aspects and limits of vital organ support; they take into account the effect of specific physiological derangements independent of the underlying diagnosis; and they can explain to patients and families what the limits of the technology of life support might be in a specific clinical situation. Thus, intensivists can guide colleagues, patients and their families toward an informed decision about EOLC.
In many countries, intensivists have also increased their involvement in managing acutely deteriorating ward patients though the rapid response team (RRT) system. Consequently, they are now making frequent and often difficult decisions about EOLC in the wards outside the ICU. As well as the traditional underlying physiological and medical diagnoses, the meta-diagnosis of ‘dying’ has to be formally considered. Unfortunately, the recognition that a patient is dying when organ support technology is either available or in place can be difficult and controversial, and characterized by uncertainty as discussed by Fisher in this issue. Accordingly, a decision to withdraw or withhold vital organ support is both a medically informed decision and a negotiated act following discussion with family and other health providers [1–5].
The dying process can be interrupted at any stage of its development by the application of technology, thus making the primary overarching diagnosis that ‘the patient is dying’ more difficult. Consider the following example: An 80-year-old patient with dementia develops pneumonia, septic shock and renal failure after surgery for a fractured neck of femur following a fall in a nursing home. This patient could be considered to have sepsis-induced multiple organ dysfunction syndrome, necessitating vasoactive medications, renal replacement therapy and mechanical ventilation. Conversely, this frail patient with advanced dementia could simply be ‘dying’. Therapeutic intervention may postpone death, but not prevent it. In this setting, the diagnosis of dying is made in the hierarchical preference to that of septic shock because of the presence of chronic, severe and progressive cognitive decline. Diagnosing dying is much more complex than the normal diagnosis of disease, in which the only immediately relevant dimension is medical. Diagnosing dying is a medically informed, technology-mediated, social decision.
The primary diagnosis of dying should be formally considered in the differential diagnostic list of all patients who present with severe illness and injury. This is especially important in patients with multiple co-morbidities, advanced age or poor physical performance. However, the recognition of dying will be influenced by the social and cultural context. In some cultures, the primary diagnosis of dying is sometimes perceived as helpful in preventing unnecessary, burdensome, painful, futile and undignified interventions. In other cultures, the prevention of death itself is seen as more important. In these different cultural and social environments, doctors respond to dominant social attitudes. However, clinical characteristics can remain compelling despite specific patient, family and physician factors.
The concept of diagnostic uncertainty applies to the primary diagnosis of dying as it does to any other medical diagnosis . There is, however, a unique dimension to this uncertainty . Although the diagnosis of pneumonia may or may not be correct, the risk that true pneumonia will develop is never increased by its diagnosis. In contrast, the risk of dying is increased by the primary diagnosis of dying. This self-fulfilling prophecy effect requires caution in making the diagnosis of dying. Objective prognostic models for hospitalized patients  should be carefully applied, the limitations of these considered, and the consequences and degree of uncertainty of the diagnosis openly discussed .
Respect for a patient's wishes and a family's wishes does not simply imply that the family alone determines ‘what to do’. The ability of surrogate decision makers to predict the patient's wishes may be just as limited as the doctor's ability to predict prognosis .
The diagnosis of dying and its management is often extremely time-consuming, emotionally burdensome and challenging as discussed by Walton and Bell in this issue. Negotiations with medical and surgical colleagues are often difficult. Intensivists should tackle such negotiations with open-mindedness and welcome reasoned patient advocacy. Some patients with the primary diagnosis of dying will die even though the primary physician insists on aggressive care; yet, others will live even though the intensivist would have preferred palliation. When such disagreement exists, collegiality, private discussions away from the bedside, courtesy, negotiation, involvement of senior colleagues from the same and different specialties, and the setting of agreed clinical indicators are all important means to achieve better identification and management of the dying process. Family discussions can be at least as challenging. Yet, the same principles apply. The goal remains to reflect upon the concept of and avoid inappropriate care as reviewed by Piers in this issue.
The above aspects and challenges of EOLC are now an established part of the daily lives of intensivists within the ICU and in the hospital in general. However, another development is changing this landscape further in almost all English-speaking countries, in Scandinavian countries, in the Netherlands and in several hospitals in Europe and worldwide: the introduction of RRTs. The impact of such RRTs has been substantial and documented by various studies [11–16], and is discussed in detail in a dedicated article in this issue.
Limitations of medical treatment (LOMT) are now a key component of ICU management in many patients as discussed by Godfrey in this issue. They should ideally be documented prior to patient deterioration. With this approach, patient's wishes and escalation plans could be clearly articulated, avoiding unnecessary escalation in cases in which palliation is indicated.
A recent, single-center randomized controlled trial in our institution assessed the effects of advanced care planning of EOLC in elderly patients . Patients who received the intervention were more likely to have their end-of-life wishes known and followed than those in the control group. In addition, families experienced less stress, anxiety and depression. Importantly, patients in the intervention arm did not experience an increased mortality rate.
There is an increased need for us to better understand the interaction between elderly preferences and physician decisions. In a recent elegant study, French investigators explored patient's preferences in a cohort of octogenarians. They found that once shown a video of the techniques, a quarter rejected noninvasive ventilation (NIV), 40% rejected endotracheal intubation and invasive mechanical ventilation (IMV), and more than 60% rejected renal replacement therapy (RRT) . Marital status and female sex significantly affects these decisions as did the quality of life. In a real-life simulation, they then investigated physician's choices . They found low agreement among physicians with regard to the choices surrounding LOMT. Even more importantly, once clinicians were made aware of the patient's choices, agreement on how to proceed was only 40% for NIV, 56% for IMV and 57% for RRT. Finally, bed availability also impacted the decision-making process. These provocative studies highlight the complex and unresolved real-life interaction between patient's perceptions and choices, physician's perceptions and choices, and resource availability.
EOLC is a growing aspect of intensive care practice within the ICU and, now, outside the ICU. Understanding the social, cultural and psychological dimensions of death should become part of the training of intensive care physicians. Formally considering the primary diagnosis of dying in all patients with critical illness either in the ICU or the wards is also an important step. The development of RRTs has added a new challenge in the field of such nosocomial EOLC by taking the intensivist's diagnosis of dying and its management to the general wards, and requiring decisions to be made with more time constraints and less information. Although the diagnosis and management of dying remains more of an art than a science, there are also many universal aspects and values that can and should be studied using scientific methodology and controlled trials. The future will deliver even more of these challenges because of the aging population; the escalating cost of advances in organ support technology but proportionally decreased resources with which to pay for them; the diminishing marginal utility in the quality and quantity of life gained with aggressive and expensive intervention; and society that may be faced with an epidemic of surviving older patients with dementia. Nosocomial thanatology will inevitably become a bigger and more complex component of intensive care medicine in the future.
Conflicts of interest
The authors declare that they have no conflicts of interest in relation to this article.
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