The term ‘assisted dying’ is being used more and more in connection with the management of sick elderly patients in hospitals or nursing homes. What does ‘assisted dying’ mean?
Many people are scared of dying. They fear that they or their relatives will suffer or that they may become confused, unable to communicate or lose their ‘dignity’. ‘Assisted dying’ promises to help reduce pain or distress so that dying is made easier for both patient and relatives.
Do we need to assist dying? Does it help? Are there any negatives or problems with it?
Many people in the UK did not know that dying was being ‘assisted’ in hospitals until two years ago when the press started to report about a clinical method to assist dying called the Liverpool Care Pathway (LCP).
A clinical pathway is a preset list of rules that improve care of patients with different medical conditions. Pathways have been in place for many years and have helped to improve recovery in patients with stroke and heart failure. A person is put on a pathway when s/he meets certain diagnostic criteria for entry.
The pathway rules then dictate what tests and what treatments should be started and usually give time limits for starting these.
To be put on the LCP, the patient had to be diagnosed as ‘imminently dying’. They were then given morphine for pain, sedation for distress and a medicine to decrease secretions. In most cases, all water and food was discontinued. Not surprisingly, the LCP rapidly lead to death (in a mean time of 29 hours).
The use of pathways to assist dying is relatively recent but increasingly controversial. Why have questions arisen?
It has become clear that it is impossible to predict if someone is imminently going to die
Normally, the goal of a clinical pathway is to make a patient live better. The goal of an assist dying pathway is to make the patient die better. The problem is that there is no objective measure for a ‘good death’.
The success of the LCP was judged by how peaceful and ‘dignified’ the patient appeared to their relatives when they died. In spiritual terms, however, the inner dignity of ending your life at peace with your conscience and with God is more important and very different from appearing ‘dignified’ and peaceful to those around, particularly if it you only look peaceful because you are heavily sedated!
Concerns started to be raised by relatives in the UK that patients were put on the LCP when they were not dying. Relatives started to suspect that patients were not really dying and demanded their relative was taken off the LCP.
Several patients who were taken off the LCP lived for many months or years afterwards, proving that, in fact, they were not ‘imminently dying’.
It has become clear that it is impossible to predict if someone is imminently going to die. This means that the LCP was actually shortening the lives of people put on it, in some cases, by many months. The outcry by relatives about the LCP led to the recognition that it was dangerous and it was discontinued after a UK government review called the Neuberger Report.
There is now an ongoing attempt to design a replacement assisted dying pathway for the LCP. The essential principles of palliative care were, however, set out 50 years ago by Cicely Saunders, who said: “You matter because you are you and you matter to the last moment of your life.”
She wanted patients to be involved in decisions about their own care and would have been very much against inflexible assisted dying pathways.
Her quote points to the best way to assist someone who appears to be dying: to listen and respond from moment to moment and to be prepared to modify treatment based on their progress and wishes; not to give sedation that will take away their ability to participate in decisions and allow them to know that their dignity is maintained throughout.
Patrick Pullicino is a consultant neurologist for East Kent hospitals and professor of clinical neurosciences at the University of Kent.