Cultural differences in end of life care

26 November 2007

Dr David Oliver from the UK outlined the findings from a study looking into end of life care in the UK, USA and Japan during a presentation on the first day of the 18th International Symposium on ALS/MND.

As ALS/MND progresses there are many decisions that need to be taken to ensure the patient’s quality of life is as good as possible. These include decisions about life saving interventions to support nutrition, breathing and end of life care.

The study reviewed the aspects of care in the three countries and considered the cultural differences from country to country. A questionnaire was sent to six hospices in the UK, a palliative care team in the US and a special interest neurology group in Japan and was completed for the last 10 ALS/MND patients who had died. The questionnaire covered the details of the patient and the use and discussion of gastrostomy, ventilation and end of life care.

The use of interventions and discussion about end of life issues varied between countries. The results showed a far greater use of ventilatory support in Japan with 36 per cent of cases using non-invasive ventilation compared to just 13 per cent in the UK and 20 per cent in the USA. Japan also showed greater use of invasive ventilation as well with nine per cent of cases, compared to four per cent in the UK.

Discussions about gastrostomy were more likely to take place in the UK with 79 per cent compared with 70 per cent in the USA. However gastrostomy is far more prevalent in the USA where it is used as an intervention in 50 per cent of cases compared to 23 per cent of cases in the UK and 35 per cent of cases in Japan.

The results showed that advanced directive discussion was far likelier to take place in the USA 80 per cent compared with just 23 per cent of cases in the UK.

Whilst there are marked differences between cultures Dr Oliver outlined how there was also differences between individual units in the same country.

Dr Oliver spoke about how discussions concerning the management of MND should occur early in the disease progression, as cognitive loss may subsequently alter the ability of the patient to be fully involved.

In the UK discussions concerning end of life issues are occurring approximately five months before death. Dr Oliver says that end of life decisions should occur earlier, especially for those with cognitive symptoms.

Dr Oliver concluded by saying that these differences will impact on patient care, as patients increasingly have contact with other patients, families and professionals from other countries and cultures via the internet.

Mel Barry Communications Manager
01604 611887/07918 652201
mel.barry@mndassociation.org

The 18th International Symposium on ALS/MND is taking place in Toronto, Canada, between Saturday 1 and Monday 3 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the ALS Society of Canada.

People living with MND may at some point need to consider the use of various medical interventions. These interventions can have a dramatic impact on the quality of life and length of survival.

People living with MND need to consider very carefully whether the intervention is right for them and their carers. It is vital that people with MND and their carers feel fully informed about interventions such as gastrostomy feeding and nasal ventilation.

The MND Association is currently funding a King’s College London project that aims to find out what factors influence a person’s decision to accept or refuse non-invasive ventilation or a gastrostomy.

The ultimate objective is to provide evidence on which to base strategies for making non invasive ventilation and gastrostomy more accessible for people with MND. The project is due to start early next year.