Respiratory support creates a new "end point" to life with MND

30 November 2006

Permanent respiratory support has changed the “end point” of Motor Neurone Disease by allowing people to live for much longer with the condition.

A session on the first day of the 17th International Symposium on ALS/MND looked at the issues raised by this longer life-span and the consequent changing needs of people with MND who are permanently respirated via a tracheostomy.

More than 30% of patients in Japan with ALS – the most common form of MND – are respirated this way, compared to only a fraction of that number in the UK or US. People in the West with MND die within two to five years of developing symptoms, usually from respiratory failure, but those in Japan can live much longer on permanent respiratory support.

These patients continue to decline, eventually reaching a “locked-in” state, where they cannot move or speak at all. They also need a great deal of equipment and 24-hour care from relatives and professionals in order to stay alive, and this raises ethical concerns about the treatment.

Today’s session looked at whether it was appropriate to preserve a patient’s autonomy when the previous “end point” of the disease – respiratory failure – no longer applied and at how communication could be maintained.

Dr Hitoshi Takahashi, of Niigata University in Japan, has studied the post mortem tissue of these longer-term survivors, to discover whether they go through cognitive changes that would affect their ability to make decisions. His research showed that while patients degenerated into a “totally locked-in state”, respiratory support did not lead to dementia or to “multisystem” degeneration, as previously thought.

Dr Takahashi said that artificial respiratory support “appears to be a useful choice of conservative treatment when ALS patients wish to live beyond the point of respiratory failure”. He added that there was an ongoing debate in Japan about whether ALS patients on respirators should be allowed to choose for themselves to continue receiving such support.

“It is time for us to consider whether ALS patients should be allowed to choose for themselves to continue receiving such support. In other words, whether ALS patients should be allowed to determine their own terminations, which may include death with dignity or euthanasia,” he said.

The issue of how a patient can communicate their wishes was explored further by Dr Hideaki Hayashi, of the Tokyo Metropolitan Neurological Hospital, who suggested that greater consideration should be given to the communication needs and strategies of people on permanent respiratory support.

He said: "In Japan sociocultural tradition, there remains a tendency that the patient's family might defer to and trust in the professional expertise and role of the physician, and the patient is perceived as outside the decision-making process."

Sarah Fitzgerald Head of PR and Media
+44 (0)1604 611840
sarah.fitzgerald@mndassociation.org

The 17th International Symposium on ALS/MND is taking place in Yokohama, Japan, between Thursday, 30 November and Saturday, 2 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the Japanese ALS Association (JALSA).