Whatever it takes Doctor, prolonging death in the ICU

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In the current era of evidence based medicine, we strive to achieve the best outcomes for our patients. In our pursuit of ‘doing the right thing’ there is a tendency to focus our research endpoints on ‘survival benefit’ or ‘composite endpoint of myocardial infarction or stroke’, rather than patient-centred outcomes such as ‘dead’ or ‘alive, well and independent’ ^[1]. The former, more common terminology uses language which puts as much distance between us and death as possible. Why is that?, asks intensive care specialist, Dr Rob Bevan.

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The tendency for ambiguous language used throughout medicine (from describing patient outcomes, right through to the conversations with patients and their families) reflects the fact that death is an emotive and uncomfortable subject.  This discomfort may stem from the fact that we all die:
Some of us will die suddenly, but the majority of us will fade slowly. However it happens, it is discomforting to contemplate.
The clear realisation that a person is ‘dying’ is difficult in the clinical environment. Though we have been taught to diagnose many conditions, the diagnosis of death is rarely taught, and the clinical criteria of impending and appropriate death are poorly documented.
Intensive Care Specialists have to contend daily with the challenge of making a diagnosis of ‘dying’ amongst those who are reversibly ill. Modern dying has been described as “a medically informed, technology-mediated, social decision” ^[2].  Establishing the diagnosis of ‘dying’ has to occur with due consideration of the appropriateness of providing or withholding organ support technology, in the unique context of the prognosis, values, goals and wishes of the patient ^[2,3], something that is difficult to translate at the bedside
The keystone to this concept is prognostication. Prognosticating for an individual patient is difficult; a particular individual’s mortality during an admission can only be 0% or 100%. Such binary outcomes are not usefully predicted by organ severity indices ^[3]. Accurate prognostication requires a multi-disciplinary approach which is honest, relies on collation and appraisal of available quality literature.
We need to consider the prognosis in the light of the individual patient’s burden of underlying diagnosis, co-morbidities, functional limitation, and response to treatment so far ^[4], whilst acknowledging the tendency for optimism from the subspecialty clinician and the pessimism characteristic of the Intensive Care Specialist ^[5,6,7].
Informed prognosis for the ’previously healthy’ critically-ill elderly population is an area of increasing research interest given the predicted expansion of this demographic group in the developed world. In a representative study, previously healthy, independent and autonomous older adults (65 and over) admitted to a medical ICU were followed to examine mortality, functional status and quality of life. Only 45% of the total, and 37% of those 75 years and older were alive at 12 months ^[8]. Later data from the same authors examined functional outcomes of those aged >65 years surviving 12 months post-ICU discharge: Half of the patients died within one year (20% of the total were post-hospital discharge).  Of the 49% of those alive, there were significant decreases in functional status, quality of life and autonomy compared to baseline ^[9]. For those over 80 years who survive to ICU discharge, the mortality at 1 year is as high as 70% at 1 year, 80% at 2 years and 90% at 3 years ^[10-12].
Long-term cognitive impairment after critical illness is an increasingly recognised problem, with potentially far-reaching implications. Of 821 adult ICU patients, 34% were left with cognitive scores at a level expected following a moderate traumatic brain injury, and 24% similar to those with Alzheimer’s at 1 year post-discharge. Worryingly, the incidence for patients 49 years and under was similar to the elderly ^[13].
Any ICU outcome data may have limitations, but these figures make for gloomy reading. Refining and validating these for specific populations is essential to enable realistic conversations with patients and their families and to assist informed choices.
When faced with honest appraisals of the burden of intervention, the potential for good or bad outcome in the face of uncertainty, what do most elderly opt for? The data is scant. An eloquent French study of community- dwelling elderly people were given theoretical critical illness scenarios coupled with education into what interventions might be required to effect recovery. The education was in the form of a carefully scripted video designed to give a balanced insight. The findings were striking: Most wouldn’t want dialysis (63%), many would decline invasive ventilation (43%), or non-invasive ventilation (27%) in the scenario that was presented- even with the prospect of recovery. The fear of losing independence dominated the reasons for refusal, with a reluctance to accept even a ‘low burden’ intervention if the outcome was likely to be a high degree of impairment ^[14].
Modern medicine often delivers a gradual progressive path to debilitation. Degenerative changes of age and illness burden combine to the point where independent existence becomes impossible. In trying to prevent death, we may only succeed in prolonging it ^[15]. Death is seen in Western society to be a consequence of disease, not an inevitably of life itself. Craig Brown, summarized this issue succinctly in the Washington Post: “There are no life-saving medications, only life-prolonging ones. To say that anyone chooses to die is, in most situations, a mis-statement of the facts. But medical advances have created at least the facade of choice…In today’s world, an elderly person or their family must “choose,” for example, between dialysis and death, or a feeding tube and death. Those can be very simple choices when you’re 40 and critically ill; they can be agonising when you’re 80 and the bad days outnumber the good days two to one. If we can be honest and admit that we have no choice about dying, then the only thing we do have a say in are the circumstances” ^[16].

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When talking about death, most of us are remarkably pragmatic; however this clarity disappears when illness strikes.”
CHARLIE CORKE 2010

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Treatment in intensive care is clearly inappropriate when it results in interventions or an outcome that is inconsistent with the wishes of the patient. Advanced Care Plans assist patients to make proactive choices, but they may be of limited value if clinicians feel that they lack specificity and applicability to the actual clinical situation ^[3].
Surrogate decision makers are usually family members, often self- selected based on their immediate availability. These surrogates may be called upon to provide a substituted judgement of what the patient would want, often at a time when they are struggling to understand the available medical information and dealing with the emotional upheaval of serious family illness.
The elderly patients outlined in the French study had mostly (72/100) discussed their end-of- life wishes with another person, however only 6% had that discussion with their children. These wishes largely constituted a “desire not to receive burdensome or painful medical interventions where the outcome was likely to be short survival and/or decreased self-sufficiency” ^[14]. Who can convey these wishes to the treating clinician if the person with whom the wishes have been discussed is not present at the family meeting?
In summary, Intensive Care has not changed the fact that death is an inevitable part of life. What has changed is the potential for life prolonging medical intervention at the end of life. Such intervention that can seriously compromise the comfort and dignity of death.
Changing this situation to one of informed diagnosis, prognosis and choice is an urgent and serious challenge for us all.

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“The diagnosis of dying should be formally considered in the differential diagnostic list.”
RINALDO BELLOMO 2013

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We need accurate prognostic information (chance of survival, treatment burden and frequency of poor outcome) for various diseases  and patient groups.
We need to know what our population wants.
Lastly, we need to assist all healthcare professionals to be able to engage with patients and their families honestly and realistically to encourage clear, informed discussions.
These actions will allow us to focus our resources on prolonging quality life, not simply to prolong dying, in a way that fails to respect the wishes of our patients.

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Dr ROB BEVAN. MB BS., BMedSci., MRCP(UK), FRACP,  FCICM, finished training at St Bartholomew’s hospital, London in 2001. He moved to New Zealand in 2005, subsequently completing specialist training in both general medicine and intensive care medicine.
He now works full time as an intensive care specialist in Auckland. He is currently on the Board of the College of Intensive Care Medicine. Rob’s main interests lay in developing online educational resources, trainee support, and he has published on training structures and workforce issues.

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A/PROF CHARLIE  CORKE. MB BS., BSc., MRCP(UK), FCICM  undertook medical training at St Bartholomew’s hospital in London.
After training as a physician he converted to anaesthesia and finally settled on becoming an intensive care specialist.
After working in Hong Kong he came to Australia, initially working as Director of Intensive Care at the Repatriation Hospital in Melbourne. In 1991 he became Director of Intensive Care in Geelong. In 2008 he stepped down as Director to concentrate more on his diverse medical interests.
Currently, Charlie is Vice President of the College of Intensive Care Medicine. He is regional clinical lead for the Respecting Patient Choices program and is the originator of the ‘My Values’ approach to advance care planning.
Charlie has published a number of papers and books on medicine and was featured on the ABC  in the film ‘In the End’. He is a regular contributor to radio.

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References

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16. Brown C. The Dying of the Light. Washington post article 11th Jan 2009: www. washingtonpost.com/wp-dyn/content/article/2009/01/09/AR2009010902298. html?sid=ST2009010903215 [Accessed 16th July 2014].