End of life: a guide for people with motor neurone disease by the MND Association
Name of project: End of life – a guide for people with motor neurone disease, MND Association
Date of publication: May 2014
Format of the health information resource or service: A4 120pg book presented in a wallet to include additional items, such as a publication list.
Any quality marks applying to resource (Information Standard, HON Code, etc): The Information Standard
Any awards won by this health information resource or service
Winner 2015 BMA Patient Information Resource of the Year Award. (A linked guide called Living with motor neurone disease was highly commended in the 2014 BMA Awards.)
What is the purpose of this health information resource or service?
To enable people living with MND to:
- find out about the choices available for end of life planning with MND
- reduce fear about end of life through becoming better informed
- manage the emotional impact of discussing their end of life needs
- feel more confident about making end of life decisions
- feel more informed about medical treatments for MND and what can be done if a time comes when these are no longer helping
- broach sensitive subjects more easily with family, friends and health and social care professionals
- gain the best possible benefit from available support systems
- communicate and gain respect for their future wishes, preferences and needs.
Who is the target audience for guide?
People living with motor neurone disease were the primary audience. The content was written as a direct dialogue with them to help them feel more control over the decision making process. However, we also knew the guide would help their families and carers, the health and social care professionals providing support, and enable our own staff and volunteers to better direct these families to appropriate support.
Link to the health information resource or service
You can select the End of life guide at: www.mndassociation.org/eolguide
It is available as a standard PDF, an interactive PDF and each internal section of the guide as an extracted PDF for instant or selected access to specific subject matter.
Which best practice guidance is this case study relevant to?
- Production of accurate and reliable information through adherence to The Information Standard criteria, evidence based research, user testing and expert review.
- Communication of clear information, not simply within the structured content and segmentation, but also in follow-up promotion of the guide to ensure this sensitive publication was disseminated in an appropriate manner.
- The information had relevance and impact as tied into multiple recent studies, which enabled us to collate responses about end of life concerns from over 500 people with MND and a further 200 affected by MND.
- Users were involved, not only from the study results prior to development, but during the project with user testing responses.
Four studies conducted between 2011 and 2013 revealed that people living with MND felt we needed to work harder to enable everyone affected by MND to:
- consider the available options for symptom management, interventions and potential withdrawal of treatment during the later stages of the disease
- feel more confident about discussing end of life issues with their palliative care specialists and wider health and social care team.
End of Life: a guide for people with MND is one of our responses to these needs, to provide open and candid information about the choices available and help people to make informed end of life decisions.
The four studies were particularly influential in the development of our approach. In total, the studies incorporated direct contributions from approximately 700 people living with and affected by MND, through a mix of survey and face to face interview. At least 500 of these were people living with the disease, which provided a significant platform of views.
This means that nearly 1 in 4 people responded, from those living with or affected by the disease, that the MND Association are in touch with (as at 2013). This work provided a strong indication of which end of life themes are felt to be important by our audience.
Details about the following studies are provided in the guide (see Section 14: What people with MND have said about end of life):
- Improving MND Care – motor neurone disease tracking survey 2013
- Choices and control when you have a life shortening illness – researching the views of people with Motor Neurone Disease
- Inquiry into access to Specialist Palliative Care for people with MND
- Difficult conversations – Making it easier to talk about the end of life with people affected by Motor Neurone Disease (produced by the National Council for Palliative Care, but part funded and supported by the MND Association)
This pre-work provided background evidence to support decisions on content, providing a framework for the project.
We then incorporated user testing, expert review and legal advice to ensure we produced an accurate, trustworthy and relevant source. An expert mentor (a senior palliative consultant) was a mentor throughout the project. 14 further experts were approached for final review. Another 6 experts were then consulted to solve any conflicts, until we reached consensus.
We were concerned about completing effective user testing as this was such a sensitive area. We forewarned our user review group about the content, so that people could drop out if they did not feel prepared to take on the task. In the end, the results were extremely encouraging. We look for 10 responses (this level of engagement was achieved). The content was split into three batches as it was a large piece of work. Each batch was sent by email with a link to Survey Monkey to collate responses.
Further email responses were also recorded and acknowledged in the conclusions report for user testing. Changes were made to the drafts on the basis of the combined user test responses. These changes included additional content, rewording, language and edits as appropriate within guidelines for accuracy and impartiality. This also provided extra quotations which are an important feature of the work, to help people with MND identify with the text through anecdotal experience and feel less isolated.
Positive feedback included:
“There is a sense of relief that all the guidance is accessible in one document and covers everything we need to know.”
“A very difficult subject to cover, but has made me realise that my husband and I have to discuss end of life options for treatment and withdrawal of treatment more fully.”
“By reading about it, you are more familiar with the subject and better informed, and therefore more confident to take discussion forward with others.”
“A very comprehensive guide which will be really helpful. I do hope that health professionals have time to read or at least refer to it. Excellent.”
“Thank you for having the courage to tackle this. I found the references to end of life options an essential part of the guide and, believe it or not, very refreshing.”
“Very simply put and easy to digest.”
“I found this extremely helpful. Especially as a springboard for further discussion with professionals.”
“We’ve got to talk about how people with MND come to the end of their lives and acknowledge the support available, otherwise the end of life stage is a very lonely and frightening place. I’m so pleased that it has entered the conversation.”
“Having full information available is essential, if you don’t want to read it you don’t have to.”
We have had an extraordinary response so far from our audiences, but also an unexpected level of requests and positivity from health and social care professionals. We have even had bulk orders for the guide from palliative care teams who simply want the publication to help train their teams (not necessarily for MND cases, but because they feel there is nothing else like this guide available). The following quotes speak for themselves:
“At the hospice, we have daily discussions with people about end of life, but there was nothing like this guide before (especially for MND). It has all the answers in one concise resource. Excellent! I take this to surgery meetings to encourage GPs to use the guide and will continue to do so.” – Sheila Bazett, Clinical Nurse Specialist, Salisbury Hospice
“We met someone today whose MND diagnosis meant their world had ended. As professionals, it’s important to be open about death, but it’s so difficult. Yet once they started asking questions, having a physical guide helped us all to focus. We introduced future planning, but also discussed quality of life and they started to plan a dream holiday. The guide helps clear concerns, so people can think about living too.” – Charlotte Turner, Occupational Therapist, Barnard Court Health Centre, South Humberside
“Quite often we, medical professionals, shy away from “difficult” conversations with patients. The unforgiving time frame of MND progression brings this in to focus. Our hesitation could be life changing for our patients if they are not made aware of what comes next. Not everyone is ready for these conversations at the same time and not everyone can cope with the same amount of information or detail. The MNDA website puts all the information in one place, clearly laid out and ready for when they are. By making the patient aware of the invaluable resource, we can leave them with the time and space to absorb what they can and come back to us with questions when they are ready. The MNDA’s End of Life Guide is a breath taking, honest and comprehensive document that shies away from nothing. The questions and answers are written in a frank yet compassionate way. So much of the advice also applies to almost every terminal situation, whatever the diagnosis.” – Dr L Sakhrani-Clarke, Dorset Macmillan GP
“A much needed guide that will act as a bridge between families affected by MND and the health and social care professionals who support them. It discusses complex decisions using honest and straightforward language.” – Dr Bee Wee, National Clinical Director,
End of Life Care, NHS England
“Thirty years ago when my father was dying from MND we had no information. My dad suffered more than he should have done as we all dealt with it as individuals. His death was not a good one and had a negative influence on the rest of our lives. This is now affecting the next generation as well and preventing us from discussing the implications of living in a family with genetic MND. I hope this publication will help other families to avoid our experience. It’s absolutely excellent, so I am sure it will.” – Person affected by MND
- Involve users in the development and invite critique – it is a gift.
- Do not set unfeasible timescales – information development needs time to breathe. Allow for comment and review, even if this means a later launch. It is always worthwhile and results in safer more reliable content than without.
- If two experts disagree, find another one with higher authority in the subject and ask them to settle the matter. It works!
- The launch is not the end. Post launch work is equally important to development. Not just dissemination and gathering feedback, but ensuring that information is accompanied by guidance to those who will deliver it – this way it is more likely to be provided with an appropriate introduction and at a point when it will be useful and feel appropriate. This can be done through training to staff and volunteers, or through direct communication to professionals, or through member communications or through online channels such as your website. Information about information is of great value to the audience.