Giving terminally ill MND patients a voice

Motor Neurone Disease (MND) affects over 5,000 people in the UK and has an incidence of 1-2 per 100,000 of the population, worldwide. It is a terminal neurological condition that usually progresses rapidly, causing the nerves that control movement (motor neurones) to die, and for the person to lose the ability to walk, talk or take care of themselves. In most cases of MND the cause is not understood and there is no cure. The research by the Motor Neurone Disease (MND) Association and Picker Institute Europe found that those people with MND who wanted to talk about this topic were not always given adequate opportunity to do so by professionals and others involved in their care. Both the Association and Picker have called for improved training and guidance for professionals so they can have better conversations with people about death and dying, as well as more MND-specialist palliative care. They are also calling for clearer Government guidance to support health professionals in having conversations with people about their choices and decisions within the law. MND is responsible for five deaths every day in the UK, and around 5,000 people are living with the disease at any time. MND gradually removes people’s ability to walk, talk or take care of themselves. Most people die within two to five years of developing symptoms. The MND Association commissioned Picker Institute Europe, non-profit research experts in patient experience, to conduct the study, interviewing 34 people at different stages of their experience with MND. The study’s findings suggest that many people facing the future with MND would find it helpful to talk about end-oflife issues, but find that such topics are taboo even for those working with terminally ill people. Many wanted to have these discussions in order to develop their sense of control and choice, allowing them a greater prospect of dying with dignity through being able to plan ahead and make decisions. Many participants also believe public debate on end-of-life issues should pay particular regard to the views of people with terminal illnesses. The areas for improvement, according to the interview participants, included greater provision of clear, accurate, upto- date information on end-of-life decision making and choices, including palliative care, advanced directives (recording someone’s wishes about the medical interventions they would wish to receive towards the end of their life) and summaries of the law on assisted suicide. Participants also highlighted the need for training for health professionals and others involved in the care of people with MND, to facilitate open discussions.

No excuse

Farah Nazeer, director of external affairs at the MND Association, said: “Everyone with motor neurone disease will be different in how and even whether they want to think about how their life will end, but this is no excuse for professionals to keep quiet or avoid raising this area for discussion. All those involved in the care of people with MND need to be open to having these conversations in ways that are straightforward, informative and sensitive. “In particular the interviews highlighted people’s fears of ending their lives in settings where there is a lack of understanding of MND. As well as better training for health professionals caring for people with MND, we want to see the new NHS commissioning structures increase provision of specialist palliative care for people with MND and other neurological conditions.” Chris Graham, director of survey development at Picker Institute Europe, added: “Some who took part in this study had never talked about these issues before, and many thanked our researchers for giving them a safe space to talk about this aspect of life with MND. The research highlighted how important it is that the voices of people who are living with terminal illnesses such as MND are heard at every level of discussion and debate about death and dying.” The study involved interviews with people living with MND in all parts of England, Wales and Northern Ireland between October and December 2011. Some interviews were conducted with the use of communication aids or online, where MND had affected a participant’s speech. The study design was approved by a research ethics committee at the University of Warwick, and people volunteered freely to take part following promotion of the study. Three key themes emerged relating to end-of-life concerns: