Motor Neurone Disease (MND)
Hospices, respite for MND and thoughts about future care
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.
Her hospice is a place of kindness, giving practical and emotional support, including home visits...
The hospice is a warm and kind place. They helped her draw up a Living Will. She does not want...
After diagnosis I was sent to various hospitals for speech therapy, physiotherapy, breathing tests and x-rays and it was exhausting. I decided I couldn't trust anyone within the medical system. Thankfully that changed when I went to the hospice. I was no longer pushed from pillar to post and I receive everything I need there. Coldness has been replaced by warmth and kindness. I have had many treatments there, including aromatherapy, healing, hydrotherapy and I use their gym twice a week. I'm sure that I would be weaker if I wasn't exercising regularly; I still walk with assistance and feel very well generally.
I have stayed there twice for respite care, both times because I was very depressed and couldn't cope at home. I found those stays reassuring and comfortable, perhaps because many of the staff know me. I would rather stay in the hospice than a hospital and have made a Living Will (ADRT), stating that and also that I don't want intervention such as feeding tubes or ventilation. I know that my opinion might change as I become sicker but I've felt this way since diagnosis and don't anticipate that changing. I definitely don't want euthanasia because I don't think I have the right to decide when to die. I'm quite angered by the way the media always associate MND with euthanasia because there are so many people living a fairly happy existence regardless of MND.
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.
Demand for hospice places in his area is so high he was told they could not offer respite care to...
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.
It helps her to have hospice respite care for her husband. The care is excellent but he'd...
The respite care, what's been your husband's experiences of that?
Wonderful. He doesn't like it, and he doesn't like going there. But when he's there, he gets the best of care possible. He actually enjoys the interaction with other people because his normal interaction is totally just with me. And I keep saying to him, 'Are you not bored with me?' And, and he says, 'No.' But he must be. So he goes in there. And he's a charming man and everybody comes in and talks to him. And it's great for him. He's very happy to come home, but he can't fault it in any single way. The girls are great with him. All the nurses, the doctors there are super. And they'll spend maybe only five minutes a day with him or maybe half an hour, whatever. But he gets not a kick out of it. He, he, he'll never say he enjoys it, but he doesn't hate it. Let's put it that way [laugh]. And he doesn't ever say, 'I won't go in. I don't want to go.' He, he manages. And they think he's great, because he doesn't complain. And he's very good that way. He'll eat anything that's put in front of him. And if the buzzer goes, there's somebody else needs the girls, he sends them on their way. And he always, says, you know, 'I won't come in if somebody else needs the bed.' But he also knows I need a rest.
And how, is it far? How far do you have to go?
It's only two or three miles away which is a good job really, because even though I do get the rest, I still go in every day.
Yes, I can't help it. I'll maybe not go in one day, where I might go and visit my brother in the north of England or I might go and visit one of our sons. But I'm back the next day [laugh]. But I don't have to think about the cooking and I don't have to spend all day with one ear listening to what might be needed. And that's, that means I get some sleep. I mean don't get me wrong, I do sleep. But it's like having a new baby in the house. You are tuned in. And if anything, a cough, a touch, no sound at all, which is even worse, you wake up, you, or you go into the other room, whatever. You're just focusing on it. So it's, and that's 24 hours a day. So when he's in the hospice I know the girls are looking after him. Because they will phone me if they need anything or they think I ought to know anything that's going on. And I can relax a little bit and, and recharge the batteries. And get the kitchen done and do the garden and this kind of thing.
She wonders if the hospice staff realise how tiring MND can be. She feels lonely when he has...
So how do you feel when Bill goes to the hospice?
Well he's been twice to the unit for respite and he's been once on a holiday with them. They actually take ten or twelve patients to Centre Parks so he's had that. The first time when I came back I felt terrible, I felt, 'This is the rest of my life, here's this empty house', and it felt awful. And I suppose that's what I got, have to get used to really. I mean, as the disease progresses you get used to doing things on your own that you would do as a couple, go to a wedding, go to somebody's party, all of those things. It's not easy, but you sort of do it for both of you but, you know, you know that this is your future life. So there's sort of that, and then you know that because he's in a different setting physically the logistics of doing everything, the loo's, the showers that are different from at home, and you hope that he's not losing, dropping down a level by things being different or easier. I mean, for example we have stairs at home until we had stairlifts and it was important that he got some, he kept up his stair [laughs] going up and down a little bit when he was in the hospice and stuff. And so there's just that element to it as well.
When he had an operation he needed help. Luise had two weeks in a wonderful Sue Ryder home, but...
So this was in January 2006, and I went in and that time I wasn't allowed to lift for six weeks. So this became a bit of a problem so we, the practice nurse of the surgery they got in touch with a caring organisation, [county organisation], and they tried to place Luise for respite for a couple of weeks, and then they were going to get a care package in. But in the end the specialist nurse pulled a few strings and got her into a wonderful Sue Ryder Hospice in [town]. And she spent two weeks there, but unfortunately because we were exercising Luise, trying to keep her still walking, we lost that facility because of the amount of staff in there, they couldn't give her the sort of one-to-one attention we were giving her at home. So she lost the use of walking then.
And then as I say, they couldn't arrange with the social services and the local council, they couldn't arrange a care package because everyone was on holiday, this was over a bank holiday time, I think. And so when also - so they couldn't get a care package in time for us, which was supposed to start two weeks into my six week period. So they had to take her to a nursing home, an old people's nursing home, which we were appalled with really. I suppose as a nursing home goes it was quite a nice place but, you know, the facilities that Luise was having at home and in this nursing home were very dismal, really, because you really have to queue up to go to the toilet. And so she was there for two weeks.
Ken is happy to have day care at the hospice, but she finds it hard to see him there and thinks...
And will the hospice step in if necessary for overnight stays?
Chris' No, it's only a day centre. Nobody stays at this particular one. It's really to give us a break from one another, to give me a bit of a break, a change of scenery for Ken. [pause for Ken typing].
Ken' You didn't like the hospice.
Chris' I didn't, no, I agree. It's the same one that Ken's brother went to. He enjoyed going, didn't he? He took up painting when he was there. And I think - did he just go once a week? I think he did, and they used to pick him up. And because our son was on holiday, we decided that he would take Ken, which he done, didn't he, the first day. And then he picked me up from work. And he said, 'Oh, I didn't like leaving Dad there. All these old people just sitting around in chairs.' So then I went with Ken, [son's name], our son to pick Ken up. I must admit we got there a little bit late because we got behind a tractor [laughs]. And so you know what it's like when you want to get somewhere. And so when I arrived people were being picked up. And all I could see was Ken in a chair and lots of old ladies with perms, like the blue-rinse brigade. And I thought, 'That's it. He's not coming here any more.' And I got all upset. But Ken wanted to go again, because they were going to massage his legs the next week. So I let him go again. Again our son took him and I went to pick him up with [son's name], our son. And we got there a little bit earlier, and Ken was playing bowls. A lady had picked, playing bowls with you, and he'd won twice. And he was playing with his left hand. So I said, 'The others couldn't have been very good.' But they'd given him a massage. And the nurses there are very nice. And I don't mean to be unkind, and it sounds really horrible, but I feel, they're all volunteer workers, but sometimes I feel they're a bit overenthusiastic, you know. I just feel - like they were playing bowls and the lady that was doing it, obviously she must go about every day, every week, I don't know, but Ken rolled his bowl and it was all this, 'Oh, well done, Ken!' and all this. And I just feel like, you know, you're being, not, I don't know what I mean really, but'
A bit patronising?
Chris' Yeah. And obviously they don't, you know - and they come round with tea and cake. And I had a cup of tea and a bit of cake. And it is a nice place, isn't it?
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.
She was sad to leave her friends behind when she moved to a nursing home near her daughter, but...
Maryse' Before that we investigated nursing homes in Bristol. [daughter] found this one in October and we came to visit it. And I thought it was the nicest one of them all. But I didn't want to leave Bristol because of all my friends. From March, my son, he came again from Australia and he helped me during the night to get up. I was losing more and more balance. And the carer said we should have two carers. Even I had a fantastic bath. If I went in that it became too hard for one carer and that was when I realised that it was time to do something. And [daughter] said, 'Let's ring up this place.' And the response was that there might be a bed in the next week. I came here on the 10th January.
Maryse' You were saying, asking me about adapting. It's amazing, I came here voluntarily and it's my home. Something, I don't know what it is, but it's playing a positive influence, yes.
She has made a Living Will (ADRT), and feels it is her right to decide what she wants, whatever her...
If I couldn't look after myself and I had the choice of a nursing home, well, those that I've seen, no thank you. And the care I've seen, no thank you. I certainly wouldn't go into a hospital. If [the hospice] could, that would be my dreams come true.
I have enough trust in them to know that they wouldn't push me home if they didn't think I could cope and I certainly wouldn't go to the hospital.
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.”
Her father had always said people should be allowed to die if things got bad, but when it came to...
At the moment they don't even want to discuss a Living Will (ADRT). They're just trying to manage and...
Others said they did not want to write a ADRT at the moment but might do so in future.
She feels very positive about life and is upset by media images of MND. In future she may make a Living Will (ADRT). She would not want resuscitation and would like a peaceful end.
So I'm not in that way at the moment. In the future I wouldn't mind having a Living Will (ADRT), and I think I will write one, just simply to say that if I need to be resuscitated I don't want to be, and that if I'm in a position where nothing can help me then they might as well give me a big dose of morphine rather than a small one and let things go easily. Because I don't see any point in sitting round for months in pain and agony. And I would hope that when I come to be in a terminal state, that they will make it as easy as possible for me. But I think it's very sad that people like Diane Pretty had to go to the Court of Human Rights and ask for help in that way. I thought that was disgraceful, really, that she couldn't be reassured that she would die a painless death. I thought that was very upsetting. But I don't really look ahead to that. I try to enjoy the way I'm feeling at the moment and stick to the positive kind of thing.
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.
His Living Will (ADRT), states that he does not want any ventilation. He wants those caring for him to let him go slowly and naturally. He does not want to be a burden.
I've done that.
Oh, you have?
Oh, yes. I'm very, very free and relaxed on that. Because I, I've done the Living Will (ADRT),and there's a copy with my GP, there's a copy here with us. And I've done it in the sense that I've said I don't want any problems if we reach the final point. And the reason I've given to my GP and other people it's very simple. Suppose we talk about the breathing problem. If I was living in Africa in the condition where I have no access to devices like Nippy [non-invasive ventilator] or other things like that, I will die naturally, because my, my breath, my lung would not be able to, to cope at the point, so I would die. So why would we continue here to give me a Nippy or to put me under therapeutic harassment, and things like that, if the body is finished? So in this case just let me go. And it's natural. So that's the, the way I feel about it. So I'm very, very relaxed on that. I said, 'Before we reach this point, I want to let you know that there's a lot of energy in the body. It's not easy to die. So I will still continue to, to fight until I can't.' The main point is that I've made a Living Will because I don't want to be a burden to anybody. So if I'm just a, a piece of, a body in the bed cannot even any, unable to do anything, it's better to let me go slowly because it means that we're reaching the point.
Her Living Will (ADRT), protects her children from difficult decisions. You can set out what treatments you want, as well as what you don't want. Press coverage of MND makes her angry.
What do you feel about the, the debate about whether people should be given the, the choice of euthanasia?
I feel that it's not, I don't think there's any black or white, where - I think it's, everybody has a human right to die with dignity, but the only concern with it is that it could be abused by people. Obviously you don't want people bumping off their granny because they can't care for them any more. That would be wrong. And I think if they're not, so long as the individual, if I can still blink and I can say, 'No, I won't, I'm, I don't want my life ending' then. But I think if it, the time is right, then I think it's silly to keep somebody in that state for the sake of another month's life, or another two months' life. Because at the end of the day if it was an animal you would go straight to the vet's. But because it's human it seems barbaric that we can allow humans to continue. Then at the same time I do get very annoyed, whenever euthanasia hits the press, it's always in association with motor neurone disease. And that angers me because I know there are other illnesses out there - cancer, my step-parents both died of cancer and I know in my heart of hearts that they were helped on their way, gently and quickly, but you wouldn't dream of making a fuss, so. And I know that people, I just get annoyed that, when it hits the headlines. I mean, I'm living with MND, not dying from it, that's my philosophy, and why should that be the only illness that euthanasia covers? To me if someone has just been diagnosed, they must think that’s the only answer. And it isn’t. There’s a lot of life to live with motor neurone disease. And although I have made a Living Will, and I have made precautions, I do think that we get a bad press that euthanasia’s always associated. I mean, even when it’s covered on TV, they often go down that route, and it’s, I just think that it’s not fair. But if they did make it legal, that would probably get rid of that publicity and the bad --.
And then it would just all go away?
But I think to, I mean it’s got to be highly regulated and it’s got, you can’t just end somebody’s life.
A Living Will (ADRT) and advanced care planning makes her wishes clear even if she can no longer express them. She wants the best quality of life she can without invasive intervention, and would consider a hospice.
Setting up a Living Will (ADRT), how do you do that?
I spoke to the Macmillan nurse at the clinic, because when I brought it up to the consultant he said, 'Oh, the Macmillan nurse will talk to you about that.' Bless her, apparently it was the first time she had to talk to anybody about it, she confessed afterwards. But she was very good and she gave me the format that the MND Association recommend. So we looked through that carefully and it seemed to be fine as far as my wishes were concerned. So I then took it to my GP, discussed it with him and signed it in front of him and a witness. So he has a copy of it, the consultant has a copy of it and we have one here. And I'm becoming aware that with the introduction of the Mental Capacity Act, I think it's next year, that it won't actually be clear-cut enough and I'm going to have to go back and revise it. But that's something I can do quite easily now I've gone through the process of what I want and what I don't want. And basically I'm saying I don't want any invasive intervention. I want the best quality of life I can have naturally, but I don't want anything invasive.
Have you, while we're talking about that, have you thought about, any other thoughts about the future in terms of care in a hospice?
Yes. I've been going regularly to the hospice for the last couple of years since the district nurse who came out initially recommended that I might be interested in going for massage there. And there's this very small hospice in our town that does day care and also has about four beds, I think. And most weeks I go for an aromatherapy massage, which is lovely. It just keeps the stiffness at bay a bit and is very soothing and relaxing. And having been there, I would feel quite happy to spend time at the hospice for short periods of time to give my husband some relief if it's necessary. And also if I can't die in my own home, I would be second happy to die at the hospice. I feel very strongly I don't want to go to hospital, and I want to avoid that at all costs. Yes... yes the hospice would be fine. And home would be best.
Footnote' As a result of changes to the law in this area under the Mental Health Capacity Act 2005, available documentation is being reviewed both within the MND Assocation and across specialist palliative care services.
Her husband's Living Will (ADRT), is stored in a special bottle in the fridge. A sticker on the front...
That's the first time I've heard that. That does sound like a good'
I'll show you the bottle [laughs].
It does sound good.
It's a Lions scheme, it operates countrywide apparently, and I think it's brilliant, because one thing on the carers' course we were told were, you know, that the emergency services their job is to, you know, keep you going. Well, that may not be what you want.
So and how did you found out, you found that?
Through the hospice. Oh, and that's another thing, because other people we have known with MND have died in the district hospital and that is a definitely a place Bill doesn't want to be taken to or die. I mean, we hope we have it, you know, everything, you can't anticipate too much, can you, what will come down, but we hope it will be here and if not here, then the hospice where he, where he, where he dies, yes.
Footnote' The 'Message in a Bottle' scheme is supported by many local Lions clubs.
She felt vulnerable till her mother's Living Will (ADRT) was finalised. Staff should raise it as a...
It was a really tortuous process. I wasn't clear whether the practice had much experience of Advance Decision. Up until that moment the practice hadn't actually had a relationship with the MND clinic. It was me who co-ordinated getting hold of the draft documents from the MND clinic. In fact I typed them up and e-mailed them to the practice. We were given completely wrong information from the MND clinic about what needed to happen to an Advance Decision. We were told that it had to be signed off by the consultant, which in fact is not true, it has to be signed off by a GP. And I looked at it and it didn't seem to me actually to be very difficult. It seemed to me actually a process that we could have had done and dusted very quickly, and the main bit in it really was, 'If you become unconscious, what level of sustenance would you like? Or would you like just to be left alone to die?' And once somebody explains to you what process the body's actually going through at the point, that you lose consciousness, then actually it's a very clear decision. You know, you don't want to hydrate the body; it's completely the wrong thing to do. So this seemed to take about two weeks to go through that. And it was people coming and people going, and it all felt very tense to me. And then Mum's answers went up to the care co-ordinator, and nothing happened, and having thought that going through this really difficult process one actually would get the signed and sealed document back within twenty four hours, two weeks later I was really getting very irritated about it, and I was also feeling very unprotected. My biggest fear was that if there was a drama and I had to call 999, I had no choice but for Mum to go in an ambulance, and everything that that means - the care is out of control. And it felt very unsafe not having that directive backing us up. I mean, my recommendation is that Advance Decision is talked about actually quite early on, no matter how difficult it is to introduce it early because at least you can do it and forget about it. To do it at a time where death is imminent and thinking through these things is tricky. And not having your carer involved at that time because perhaps you feel it's too sensitive or whatever, leaving it so late that the carer feels unsupported, is not the right thing to be doing. It's something that should just be tackled as a piece of business early on, and then put away, reviewed if necessary at some other stage, but not left until the last minute.
And who should that come from? That initiative, do you think?
I suppose it really depends on who is the closest to you in your treatment, which person in the medical world. For us it was a district nurse who happened to be somebody who had worked in a hospice and so was actually entirely capable of introducing the subject without difficulty. But I think if a relative feels capable of doing it, then they should be helped with some level of medical expertise to talk that through with the relative. Because I think it promotes a decision of where somebody is going to die. And on the business of dying at home, I think it’s interesting. I think that there is a focus towards dying in a hospice. For me the idea that you would move a body at a point where somebody is very ill and take them to some place to be managed, to me that seemed completely inappropriate.
Footnote: A doctor does not need to sign and Advanced decision, but it can be used to show that he or she fully understands the person’s wishes about treatment. It is important to ensure that a copy of the Advanced Decision is placed in the person’s medical records, and that the relevant people know that it is there.
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.