Bristol Professor strives to ensure men heard on end-of-life care
A Bristol University professor is set to work with men affected by a rare and severely disabling muscle-wasting condition to better understand how, when and with whom highly sensitive conversations about end-of-life care should take place.
Over the next 12 months, Professor David Abbott will interview 20 men with the life-limiting condition, Duchenne muscular dystrophy, on their views on how family members, friends and health and social care professionals can best approach supporting people to make decisions about end-of-life care. The £44,000 project is being funded by the Duchenne Forum, a collaboration established between charities, Alex’s Wish, Muscular Dystrophy UK, Duchenne Children’s Trust, Duchenne Research Fund, Joining Jack and Harrison’s Fund.
Duchenne Muscular Dystrophy is caused by the lack of a vital muscle protein called dystrophin in the body, causing muscles to weaken and waste over time and leading to increasingly severe disability. As the genetic mutation causing Duchenne Muscular Dystrophy is found on the ‘X’ chromosome, almost all of the 2,500 children and adults in the UK who are affected are male. The condition eventually compromises the vital muscles of the heart and chest, and while potential treatments are in clinical trials, few of those born with the condition currently reach the age of 30.
Qualitative researcher Professor Abbott will work with psychologist Dr Helen Prescott to collect the views of the men, all of whom will be over 20 years old, and produce recommendations on issues including opening discussions on death and dying and understanding the perspectives of children and young adults with life-limiting conditions.
Dr Marita Pohlschmidt, Director of Research for the Muscular Dystrophy UK, said:
“Feeling able to talk about end-of-life care can be very important for people of all ages with life-limiting conditions. However, this is of course a highly sensitive topic, and can be extremely difficult to approach for family members, friends and health professionals alike. We and the Duchenne Forum are funding this valuable study to ensure it is the views of those dealing with Duchenne Muscular Dystrophy that shape how, when and with whom these conversations take place.”