Peer reviewed by Steven Musca
This is part one of a series exploring dying in the ICU.
The majority of people in Australia will die in hospital. In the Intensive Care Unit (ICU), the critically unwell nature of our patients means we see more death than in the general ward setting. ICU mortality rates of Australian patients are declining but are still around 5-10% depending on case mix, with significant international variation. The ‘ICU mindset’ is often geared towards preserving life and so death may be sudden and despite resuscitative efforts. Increasingly we also admit patients with baseline frailty who fail to recover and for whom a shift to a palliative approach may be indicated.
The World Health Organisation (WHO) defines palliative care as ‘an approach that improved the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual.’ Almost by definition, patients in the ICU are facing life threatening illness. Whilst we always strive to avoid and relieve suffering, this is sometimes secondary to attempts at achieving recovery.
Palliative care is a discipline in its own right. Whilst as Intensivists we are no strangers to death, in our environment death may come at the end of a challenging resuscitation and usually our dying patients are comatose either from their pathology or our interventions. The nuances of managing physical symptoms in awake and interactive patients at the end of life, let alone existential distress, can be challenging.
Palliative care, withdrawing life sustaining treatments and end of life care overlap. However they are not the same thing. As Intensivists we are familiar with having discussions around the withdrawal of life sustaining treatments when they are no longer likely to provide benefit. Whilst some treatments may be ceased, ongoing care is always paramount. In these circumstances end of life care often involves analgesia and sedation for a patient in their final hours, as well as support for their loved ones.
As seen from the definition above, palliative care is much broader than palliative sedation at the very end. Many ICU patients may benefit from the broad range of palliative care principles earlier in their disease course. It can be difficult however to identify and engage these patients. Proactive palliative care can manage symptoms, preserve dignity and comfort, whilst providing essential support to patients and their families.
Data suggest palliative care can not only improve quality of life and mood but may also be associated with increased survival times despite less aggressive treatment, for example in malignancy. The mechanisms for this are unclear but hypotheses include holistic and multidisciplinary care and attention, reduced symptom burden, and less exposure to potentially noxious treatments.
It may therefore be valuable in some circumstances to uncouple palliative care from end of life care when we talk to our patients and their families. Particularly in the ICU setting, a parallel approach of concurrent appropriate potentially life-prolonging treatments and palliative management of symptoms may provide the best of both worlds. Managing expectations, for example with a time-limited trial of appropriate organ support with palliative care in conjunction, can help prepare families and reduce the burden of likely futile treatments.