Motor Neurone Disease (MND)

Many people were receiving support from their local hospice, and several more said they would like to in future. A few were shocked when a hospice was first mentioned, because they associated hospices only with end of life care. One woman was told soon after diagnosis that her local hospice would be informed, and said, “I was horrified with this news and couldn't imagine why I would need the facilities of a hospice - after all I wasn't dying.” However, many people were pleased to discover that some hospices could also offer a range of day care (including massage and aromatherapy), respite care, practical advice, counselling and home visits. Some felt the hospice took on a central co-ordinating role in their care, and provided both medical and moral support.

A few people said it was hard to get a place in a hospice near them. Sometimes there were problems with a shortage of beds and high demand for places, and not all hospices could offer support to people living with MND.

Many people talked about the importance of respite care, sometimes because a family member was temporarily unable to provide care or because carers just needed a break and some time to themselves. (See also 'Impact of MND on family carers'). Respite care was often provided by hospices, but also in other settings such as nursing homes or local authority services. Often people stayed for a few nights, but some had respite care just on a day basis. Home respite care was also available in some places, where someone came to look after the person with MND at home so their carer could go away. Again, access to respite care could be a problem. One man said there was a three-month wait to book a respite care place, which was just too long to wait given how fast his daughter's symptoms were progressing.

Although people valued respite care, it was not always easy, either for the person themselves, or for their relative. Some thought perhaps the condition had worsened during their stay, and one man said he and his wife preferred home respite care, A few people had concerns about the quality of respite care, but sometimes it was just a question of being away from home, and having to adapt to a different routine. A few people said they did not like organised activities or the atmosphere of day respite care - see also 'Support groups and meeting others with MND'. Some people who had lost their speech felt day respite care offered limited benefit.

Several people talked about their plans for future care. Many hoped they would be able to stay at home and be cared for by their family, but some recognised this might not be possible. In that case, most preferred the idea of professional nursing care at home or in a hospice to being in a hospital ward. One woman was interviewed after she had moved permanently into a nursing home and she was happy with the decision.

A number of people talked about planning ahead for future care. This often involves making an Advance Care Plan to guide everyone involved the person’s care about their needs, wishes and preferences. This is not legally binding, but can help health and social care professionals to provide appropriate support. Planning ahead can also include a form Advance Decision to Refuse Treatment (ADRT), previously known as a Living Will. This is a form that is legally binding when completed correctly. It allows the person to refuse certain treatments or have them withdrawn in specific circumstances if they are no longer working or have become a burden.

Making decisions about future care can be challenging, but the MND Association provides a candid and comprehensive publication called, End of life: a guide for people with motor neurone disease. This publication covers all aspects of end of life decision making, future care with MND and how to manage difficult conversations, whether with family and friends, or professionals. They also provide information sheet 14A: Advance Decisions to Refuse Treatment, which includes a completed sample ADRT form and a blank form to use if wanted. Their resources can be downloaded from their website.

Information and forms on Advanced Decisions can also be found on the Compassion in Dying website.

Several people said they were not interested in making a ADRT. Some simply did not want to think about it - as one man said, “If we were to start worrying about that, we'd never get through the day, we'd just crack up.” One woman was upset that the issue of whether or not her father wanted to be resuscitated was raised in an inappropriate way'

“It was brought up quite casually as I was leaving in a corridor. A junior doctor said “Oh, by the way, what do you think about not resuscitating him?” And I felt on the whole that it was a very big subject that was treated in quite a cavalier fashion.”

Some were unsure how they'd feel in future and wanted to decide nearer the time. One woman said her father's long-held views started to change when he found himself in that situation. Another said, “With all of these ethical questions, when you've got the bridge to cross you don't quite know if you'll still keep that decision that you've made.”

Others said they did not want to write a ADRT at the moment but might do so in future.

Some people had very clear views about what kind of care they would like, and had discussed this with members of their family and sometimes health professionals, but had not written it down. Others felt it was important to put their preferences in writing before their symptoms progressed (especially if they were worried about losing their speech) and felt secure knowing that their wishes for their future care had been organised. Some wanted to protect their family from having to make difficult decisions if they themselves were unable to communicate, and some felt strongly it was their own right to decide.

Most people we talked to share a general view that they did not want invasive treatment, and did not want to prolong life artificially, but did want the best possible palliative care to ensure they were as peaceful and comfortable as possible. However, each person has their own definition of what they mean by 'invasive' or 'artificial'. For example, some felt strongly they would not want any kind of ventilation, whereas others would consider non-invasive ventilation but not invasive ventilation. Some saw a  feeding tube into the stomach)as invasive, others did not. (See 'Feeding tubes (PEGs, RIGs, PIGs) and ventilation'). Some people felt it was important to remember that you can set out clearly what treatments you do want, not just what you don't want, and that you can always change your mind. Several people saw an ADRT as a kind of 'back-up' or insurance, just in case there were any disagreements about their care, but hoped that it would not be needed and trusted that they and their doctors would agree about what was best.

A few worried that if they wrote a ADRT it might be difficult to change their minds. In fact this should not be a concern. People do not have to decide in advance about every treatment in order to write a ADRT, and can specify only the things they feel sure about. They can change their ADRT at any stage. For example one man had stated in his that he did not want resuscitation, but had left decisions about ventilation open. 

“Do I want respiration? I don't know. I'll make my mind up when the time comes. You know, it depends on quality of life.”

UK law does not allow assisted death and a ADRT cannot be used to request this.The MND Association publication, End of life: a guide for people with motor neurone disease, provides clear guidance on how an ADRT can be used.

Information about end of life decisions is available on the MND Association's website. Other resources include a guide called Caring and MND: support for you, which supports carers on a variety of subjects, such as respite care.

Different attitudes to assisted dying and thoughts about death more generally are explored further in 'Thoughts about death, dying and bereavement'.

Last reviewed August 2017.
Last updated August 2017.