What should be top of palliative and end of life research To Do list?

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At the beginning of the week, the Palliative and End of Life Care Priority Setting Partnership (peolcPSP) launched a survey. Its aim is to help those with a passion for finding answers in the neglected area of palliative care research work out what should be top of their To Do lists. The MND Association is one of the partners in the project led by Marie Curie Cancer Care and supported by the James Lind Alliance.

We’re asking people with MND, their families and carers, healthcare professionals and clinicians to rate a set of 83 questions. For each question you can say whether you think it is a low or high priority for research. 

Where did these questions come from?

This ‘prioritisation’ survey is the second stage of the project. The first stage took place earlier in the year, when we asked people to tell us their questions or experiences about the end of life. More than 1,400 people contributed to the first stage of the project. A big thank you to the many people affected by MND who took part.

Sometimes it’s not so easy to explain exactly what the question is – in recognition of this there was plenty of room in the survey for people to write about their experiences or their questions on this difficult topic.

Over the summer a team of people across the country categorised the answers, checking to see what was known about the topic already (what evidence was available) and re-phrasing the topics into questions. At each step of the way the initial responses were close to hand, to check that the original meaning had not been lost.

What are you asking us to do?

Please can you help us find the top priorities for research (which topics should be top of our To Do list) by reading 83 questions and considering whether each of them is a priority for you.

The list of questions is on the internet on this link. For each question you will be asked to rank the questions on a scale of ‘very low priority’, ‘low priority’, ‘high priority’, ‘very high priority’ or ‘no opinion’.

The questions are complex, thought provoking and in some ways challenging. We estimate that it will take around 45 minutes to rate them all. It must be completed in ‘one go’ – its not possible to save your answers half way through and come back to them.

If you don’t have access to the internet, or you’d rather do this on paper, please email or phone 020 7091 4153 to get a paper copy of these questions. The survey will be open until Sunday 27 October.

So why are we doing this?

Sue Smith RCDA
Sue Smith RCDA

I am delighted to see this research project progressing. Families tell us all the time of the huge value of including palliative care in the local MND service – it provides help for the whole family.

I can only encourage everyone to complete the survey and ‘have their say’ in what matters to them in the field of palliative care research. This seems to me the only way that we can know what the most important issues are and ensure the right research activities are initiated.

Sue Smith, MND Association Regional Care Development Adviser (RCDA), who has a background in palliative care.

More information on end of life care

We acknowledge that this research project may not be for you. End of life care and end of life decisions are sensitive subjects that many people find difficult to talk about or explore. You may not feel ready for further information yet, but we are here to help you when you do. If you have any immediate concerns, please contact our helpline MND Connect for advice and support ( , 08457 62 62 62). You may find a new End of Life Guide that we have published useful, more information is available on our website.

Thank you, in anticipation of you giving your time and wisdom so generously.


6 thoughts on “What should be top of palliative and end of life research To Do list?

  1. Just completed the survey, although there were very few things I could find that were “low priority”. I am glad to see prioritization taking place and very glad to see MND (and Parkinson’s and dementia) called out specifically but really I wish there was just more funding to study *all* of these very important questions.

  2. My wife died July 22 2014 five months after being diagnosed, she was very patient and showed no frustration, but inside she must have suffered terribly but stayed calm for those around. The first things we should have talked about should have been what we expected of each other as this haunts me every day, her life was shortened by MND and I would not have wanted her to go on any longer, the priority of speaking and discussing is something some MND patients don’t have she could not speak after about eight weeks and the disease even took away the ability to communicate by writing or typing because the co-ordination between speech and fingers died, so we had no communication for four months apart from hand pressures and signs even though she remained totally alert. I fed her via a tube and gave medication the same way and what a blessing it would have been if she could have said no more or I am in pain. Grieving is made more difficult having had no communication for such a long time.

  3. So glad to see MND being given some individual recognition in this survey as further MND research is desperately needed. There are so many questions surrounding MND and caring for someone with MND, yet not many answers. For so many families they simply have to learn as they go with MND care – this coupled with the devastation of watching someone you love weaken and deteriorate as a result of the disease. The indomitable strength required of those with MND, and those caring for those with MND is beyond comprehension – for them, I believe we need more answers.

  4. I recently lost my Dad to that may sound odd. He was 86 and untill May 2012 was quite happy looking after himself, cooking,bathing etc. I did his washing and ironing and took him shopping. He had something they call Discitis following what should have been a routine examination p.r…(per rectum). Two days later he collapsed. The reason I am telling you this is because a year later after several infections all picked up whilst in hospital I was called into the Sisters office and she proceeded to discuss end of life care. My Dad at this point was sitting up in bed enjoying his tea and although he was unable to walk or stand he was ok. I decided that it was time for him to come and live with me and we set the wheels in motion. 5 weeks later my Dad came home. He was not at this point in the best of health, he had deteriorated considerably and the Drs had asked about the pathway. Now in Wales they use this term it seems to describe end of life treatment. Only its not (a treatment at all) its a term that replaces euthanisia for people who the hospitals no longer see fit to treat and deemed to old ???.
    Palliative care and end of life care needs to be carefully administered and documented so there is no confusion as to what will happen if you as a relative agrees to the term being used. I nursed for many years in care of the elderly and it was exactly what it said on the tin..CARE..and we did care. Sadly my Dads life was ended in very distressing circumstances not just for us but for him. He died of hospital related infections and whilst infection sounds like something you can treat with antibiotics not all infections can be treated and they cause very severe complications. So my point is that explanation is the key to any form of treatment or care that is being administered. Make sure the relatives know what it is your saying when you use the term end of life. Whilst it is probably an acceptable term where there is a clinical diagnosis that is not always the case. Sorry if this is a little long winded.

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