2.3 What is the definition of end of life?
Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:
a) advanced, progressive, incurable conditions
b) general frailty and co-existing conditions that mean they are expected to die within 12 months
c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition
d) life threatening acute conditions caused by sudden catastrophic events
(The Leadership Alliance for the Care of Dying People, 2014)
It is difficult to find a definition that fits all possible life limiting conditions, and in the case of Parkinson’s, in which the progression is slower, fluctuates and is at times unpredictable.
It is argued that using the ‘surprise question’ – would I be surprised if the person in front of me were to die within the next six months to a year? – would not be appropriate and is not taking into account the ‘palliative phase’ of approximately two years prior to death for people with Parkinson's.
In the following film Dr Vas Krishnaswami discusses the challenges of using the ‘surprise question’ in Parkinson’s.
Dr Vas Krishnaswami
The surprise question would often refer to a statement where we see someone that we make the prediction: “Would I be surprised to see the person fade away in six to twelve months’ time”, so, this statement is often difficult with Parkinson’s disease, as the disease, illness, and cause, can be fluctuant. Any integrant (internal?) illness like a chest infection can bring down the person in terms of physical abilities, and this can falsely give the impression that they are in a terminal phase, but with treatment and appropriate rehabilitation, the patient can often return back nearly to the quality of life that they had before. So this decision, or other statements of a surprise question, is extremely difficult in Parkinson’s disease, primarily because of the fluctuant nature of Parkinson’s disease.
To overcome these difficulties some professionals argue that there is a need to avoid traditional prognosis-based approaches for end of life care referrals, and instead to focus on the person, their experiences of their life limiting condition and their present needs. We will find that the principles of end of life care incorporate this point of view.