Motor Neurone Disease (MND)

Thoughts about death, dying and bereavement

Many of the people we spoke to were determined not to spend precious time thinking too much about death. They saw themselves as 'living with MND, not dying from it', as one person put it. (See 'Philosophy, attitude and messages to others'). 

However, given that MND affects life expectancy and there is no cure yet, inevitably people's thoughts sometimes turned to what would happen at the end of life. Attitudes to death are very personal, and are influenced by many factors. 

Some people reflected on death as a natural part of life, even if they were still enjoying life and it was not something they wanted to think about at length. 

However, the idea of a life cut short was obviously upsetting and disturbing to many people, both those living with MND and family members. One woman (see Interview 11 - Penny's story) explained,

“My mother couldn't cope with it at all. She was angry. …And I guess the hardest thing for her was the fact that her daughter was going to die before her.” 

For people with young children, the thought that they would not see them grow up was especially poignant.

Some people coped with the knowledge that they were dying by not thinking about the future. Others were glad they had an opportunity to plan ahead, to sort out their financial affairs, to write a will and to have time to say goodbye. One man (Interview 29 - Michael's story) said, 

“Unlike certain other conditions I've been given some time with which to organise a goodbye, organise a legacy, generate memories - whatever you want to see it as. You have some time to do certain things - I could have had cancer and been given six weeks.”

Inevitably death was a mysterious and often fearful prospect. Talking about death to family and friends was harder for some people than others, either because of their own emotions or because friends and family were too upset to discuss it. One man (Interview 42 - Dick and Di's story) said his wife's response to her diagnosis was, “Okay, well, let's just work out the best way for me to die.” He was amazed at her “extraordinarily practical view of life”. One woman said a friend found the idea of her dying more upsetting than she did.

Others said it was not something they wanted to talk about yet, and their focus was still on living as normal a life as possible. Some said they discussed it occasionally, but most of the time it was kept in the background. One man explained:

“We talk about it at times, but it's specifically to do with something or some change that's going on. It's not a daily thing.”

Another man said his wife wanted someone to tell her frankly when her symptoms were progressing, but he found it too upsetting to contemplate what would happen to her. 

One woman who herself believed in an afterlife said how difficult it was for her to console her father, for whom 'death was going to mean nothingness'. 

People's fears or worries were often not so much about the moment of death itself as about how and where it would happen. Some worried about becoming unable to move or speak, and whether they might choke to death. (In fact choking is very unlikely to be a cause of death, though it is a common fear). These fears led some people to the idea of assisted dying or euthanasia, which they felt would give them more control and dignity, and enable them to avoid a long, slow decline. (The word euthanasia, from Greek, literally means a 'good death' or death without suffering, but it is often used to mean assisted dying). UK law does not allow assisted death, but some other countries do permit doctors to help people to die in carefully controlled circumstances. A few people thought they might choose this option for themselves by going to a country such as Switzerland where assisted death is legal. Others felt it ought to be legal in the UK, so that people had a choice, even if it was not something they themselves would want. Many people mentioned the moral complexities and the dangers of abuse, but still felt that people should have a right to die when and how they wanted. Others were opposed in principle (see Interview 21 - Sarah's story).

The Healthtalk website on 'Living with dying' has additional perspectives on this and other issues facing people living with a terminal illness.

Several people were upset that the media always seemed to use MND to illustrate the debate about assisted dying rather than other conditions. This included people who were in favour of an individual's right to choose, whether for themselves or others, as well as people who were against assisted dying on principle. Whatever their personal views, there was a feeling that the media tended to present only the end of life stage of MND, that they did not always portray it accurately, and that they tended to focus on 'horror stories'. Some carers who talked to us after the death of a relative with MND wanted to reassure others who were worried about what death would be like. 

Some other family carers also said they wanted honest and detailed information about death but felt the answers they got were vague. It is of course difficult for staff to predict exactly what will happen in each case, however, and carers may not be easily persuaded by their reassurance that death is likely to be peaceful. 

One man explained how his wife had chosen how she wanted to die, with no drugs, and how they had said goodbye to each other.

Morphine or other drugs are often used to ease symptoms, such as pain, when people are close to death. Some people said they wanted to use such drugs, but others wanted to remain alert. Some said too high a dose could make people feel very strange.

Several people hoped that they would be able to move into a hospice towards the end of life (see 'Hospices, respite and thoughts about future care'). One woman hoped she would be able to stay in the nursing home where she was currently living - as she said, “It's my home”, and she had previously had some distressing experiences in hospital. However, another woman described how her father had died peacefully in hospital (see Interview 01 - Jenny's story). A man said although he was unhappy with many aspects of hospital care, his wife's death had been a peaceful moment. 

Being able to die at home was important to many people. One woman felt there had been some pressure to move her mother to a hospice and was glad that they had managed to keep her at home in the end. She said:

“Actually I feel it was an incredible privilege to be with Mum at her dying. And that my overwhelming sense is that she was dying. It wasn't that we had a whole lot of healthcare professionals who were rushing around her in the moment of death. So it allowed the person to die.”

There were several accounts of excellent home support from a range of voluntary organisations and NHS staff, including GPs, district nurses and palliative care nurses. One man singled out the support from local district nurses. 

“They were absolute amazing. They were lovely. They came in, and they were friendly and chatty and they became part of the household… They just felt like friends coming in… There was no hint of bureaucracy about them.”

Good support at home when their relative was dying was vital for carers. A few carers who lacked such support told us they had been greatly stressed and felt that could have been avoided.

For many relatives, part of coping with grief was knowing that they had done all they could in caring for their relative during their illness. Some of the carers we talked to spoke about how they had coped with bereavement.

See also sections on 'Philosophy, attitude and talking to others' and 'Hospices, respite and thoughts about future care'.

Information about end of life decisions and bereavement is available from the MND Association's website. The MND Association publication, End of life: a guide for people with motor neurone disease, includes guidance about the later stages of MND and dying. Often, knowing the facts can help to reduce fear and help people plan support in a way that feels suitable for them. The carer’s pack, Caring and MND: support for you, is also a good resource for carers, providing emotional as well as practical support.

Last reviewed September 2014.
Last updated
September 2014.

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