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Multiple Sclerosis: friends & family experiences

MS: talking about end of life

Most people who have Multiple Sclerosis (MS) are diagnosed in their 20s and 30s and, like people without MS, most will live for decades. This means that it is not right to think of MS as a terminal condition in the same way that – for example – certain aggressive cancers are considered terminal. But MS can cause serious disability over time and some of the symptoms associated with severe MS can be life threatening. Care and support can help minimise the risks of death from severe symptoms.

Progressive MS (primary and secondary) is often associated with more severe symptoms. Increasing immobility raises the risk of chest and urinary tract infections. Infections can be serious and some can be fatal*. But there are people with primary progressive MS who live a long and fulfilling life. Equally, there are a very small number of people who experience aggressive and severe relapsing remitting MS.

Living with the uncertainty of advanced or aggressive MS can be hard. People may feel torn between wanting to get on with everyday life, not thinking too far ahead, and preparing themselves for what might happen.

 

The doctor implied to Kay that her brother might die within 12 months. She appreciates that both the neurologist and the GP have been open about this. The conversations are upsetting but it helps to be a little prepared.

The doctor implied to Kay that her brother might die within 12 months. She appreciates that both the neurologist and the GP have been open about this. The conversations are upsetting but it helps to be a little prepared.

Age at interview: 38
Sex: Female
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I said to the home where my brother is quite recent, like at the beginning of the year that, you know, I want to go to any regular appointments that he has. And then he had an appointment with the neurologist, so they told me when the appointment was and it was at 2 o’clock on a particular day. So I’d arranged with work that I’d go straight from, I’d go straight from work and I’d meet my brother at the hospital. I got into the room where the waiting room just on 2, to be told that he’d been and gone from the appointment. 

Because, because he came in on a stretcher, they saw him as a priority at half past 1. And I was devastated because I wanted to speak to the neurologist because I wanted to find out like what the situation was and how he’d deteriorated. So I asked if I could speak to the neurologist and immediately I got, “Data protection, you know. Can’t speak when the patient’s not there,” and all that kind of thing. 

I mean I happened to have, and I said I’d go and get it if they really wanted it, a copy of power of attorney in the back of my car. Eventually she told me to wait, the nurse, and that she’d speak to the neurologist when he came out of his next appointment. Fortunately, the neurologist was quite happy to speak to me and that’s when I went in and was told that, you know, his condition had got a lot worse and that he’d given him some Botox. And, and then he said the words, “I’ve made an appointment to see him in twelve months’ time. If I see him in a year, great.” So I was basically thinking, “So you’re basically saying to me that my brother has about a year to live.” 

I don’t know which way you can deliver news like that that makes it any, any easier. But he did offer to, if there were situations where [name] was in hospital in the future, you know, I could contact him and get him to, you know, go and have a look at him. He also talked to me about if there’s a situation in the future where [name] might have to have, oh, what’s the word for the machines? The neurologist also talked to me about if [name] had, would have to go, if he had to go on a ventilator in the future and, and what his views were about whether or not that would be useful to [name]’s health. It was quite useful to have that conversation although it was quite upsetting, sort of understand the practicalities. Got a bit of time to prepare for it then. And even though, you know, it may be less than what, the time he’s given, or more, it makes you, I guess, be able to take stock of, of the situation and, and try and prepare yourself a bit more. So, so, yes, I found the neurologist that we’ve seen quite useful.

His GP, as well, is quite nice. We had an end of life care conversation as well this year. There’s been a lot of these sad conversations going on and I’m sure they hate it just as much as the relatives. So it’s quite, it’s horrible, but I think sometimes you need people to be honest with you as well. My mum was quite private about her illness and didn’t really let us know how bad it was. It’s a different situation with my brother because obviously you can see it more obviously what’s wrong with him. I think it helps to be a little prepared. I don’t think you’re ever prepared for losing somebody you love, but I think it helps to sort of know, and also feel that you’re making the right decisions. 
 

Alice tries to live from day to day, rather than dwelling on the past or the future. She doesn’t talk about dying in front of her friend, who is her former partner.

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Alice tries to live from day to day, rather than dwelling on the past or the future. She doesn’t talk about dying in front of her friend, who is her former partner.

Age at interview: 35
Sex: Female
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Really I try and not think about the future and not think about the past. It’s quite unusual for me to talk about the past because it’s really difficult and the future is really difficult. The present is kind of, kind of manage that, day to day, present tense, we can kind of do that, you know, get through the day, get through tomorrow, kind of manage that but I show him photos and reminisce a lot. I don’t know how much he likes that, to be honest. It’s very bitter sweet. So I don’t know if that’s such a good thing to do but I try and just tell him what a brilliant life he’s had, what fun we still have, you know. We’ve been on this amazing adventure together. Yes, it’s a pretty tragic one but there’s always been an awful lot of fun and laughs along the way and trying to just, you know, remind him how extraordinary he is.

And we certainly don’t talk about, no one’s ever said to him he’s got a terminal disease ever, no doctors, no one and we’ve just kind of gone along with it.

But do the doctors talk to you as though he’s got a terminal disease?

Yeah.

Yeah, yeah. [mm]

Yeah, we just don’t stand in the same room. So we always go out of the room to talk about that.

Yeah.

There’s just no point in, why would you tell someone whose life is so awful already.

Yeah, he can probably work some things out for himself can’t he?

Yeah, I think so but that’s always been one thing that he’s never quite accepted.

He’s always been in a bit of denial about that.

So we don’t say that he’s not. We don’t say that he’s going to live but we don’t say that he’s not going to. We just don’t talk about it. We talk about music and the radio and present tense stuff.
 

Alice’s friend, her former partner, has 24 hour care at home. Sometimes it has seemed that he is close to death but he keeps ‘fighting back’ from ‘various infections’.

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Alice’s friend, her former partner, has 24 hour care at home. Sometimes it has seemed that he is close to death but he keeps ‘fighting back’ from ‘various infections’.

Age at interview: 35
Sex: Female
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I fear that we’ve reached the point of, you know, people aren’t supposed to live in this stage of the disease. I think he’s only lived this long because he’s a young, strong man. The doctors predicted his death five years ago, when he was given three days to live and that’s happened on a couple of occasions.

So he’s not, strictly speaking, meant to be living in this phase of the disease, which is so bleak. So, yes, we’ve experienced so much, me and him, you know, like a little team but, you know, can’t believe we’re still battling it really. But I’ve kind of got to the point where, I’m kind of ready for it to end now, kind of, not quite because I can’t be confident that he’s okay anymore and for as long as he was okay with the condition, however awful it seemed to the rest of us, I could, you know, support everything he wanted to do in that limited world that he was in.

But now I just don’t know, if he was in hell. I can’t get a consistent answer. I say to him, “Are you finding life tolerable? Are you finding life intolerable? Are you coping? Are you not coping?” I’ll, you know, phrase every question every which way I can think of to get a consistent blink but I’m not and I don’t know if that’s because he can’t do it or if that’s because he’s saying, “It’s complicated, sometimes I’m okay, sometimes I’m not okay.”

You mentioned the palliative care team. What input do they have?

A couple of years ago they were quite involved. We saw a consultant from time to time and a couple of nurses would come round. Now, I’m not clear. His parents have a better idea. They don’t seem to be hugely involved because, although he’s end stage, because he’s been, because he keeps fighting back after all these various infections, I don’t think that he’s in that kind of very critical end stage that they would kind of get kind of get involved in. We were offered a room at the palliative residential unit and said no to that. We’re lucky that he can be at home. Much prefer him to be. I think if he went into a hospital or a residential care, I think he would die within weeks. I think he gains great comfort from being at home and if in his head he’s much more well than he actually is, which I partly think that is going on a little bit, then of course he’d be at home. It makes complete sense. So, you know, why wouldn’t he be?

So no, they have been involved to some degree. I thought there was a time when he was dying and I remember saying to the palliative nurse, “Is this it.” Because he had sort of, rattling, he was rattling. I was thinking, “This is the moment and this is all, it’s all, this is the time when it’s all starting.” And she said, “No, no, no. He’s not there yet.”

So, I’ve done a lot of reading about the signs to look out for and sometimes the doctors, the locum doctors in the middle of the night have said, “This is it. Get his parents round.” And at one o’clock in the morning, I’ve had to get his poor parents out to come and see him because they’ve said, “Right, his organs have gone into failure now.” And the rattle has started and you’re thinking, “Oh my God.” And then, you know, twelve hours later he’s fine again. So people get, this is what I’ve learnt is, that medics get things wrong all the time in complex neuro-degenerative diseases where there isn’t necessarily a template and he isn’t necessarily your average patient. So yes, I hope the palliative team will get involved in the future. 
Kay is her brother’s only sibling, and both their parents died a few years ago, so she does think about the practicalities of what to do when her brother dies:
 

Although she feels, ‘quite macabre’ thinking about funerals, Kay has to plan for the future, because she is her brother’s next-of-kin. She finds it hard to ‘engage him in thinking about it without depressing him’.

Although she feels, ‘quite macabre’ thinking about funerals, Kay has to plan for the future, because she is her brother’s next-of-kin. She finds it hard to ‘engage him in thinking about it without depressing him’.

Age at interview: 38
Sex: Female
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But I mean sometimes I think about funerals and things because, because we live away from where we are and I think about the practicalities and, you know, “Would we have a funeral in London? Would we have a funeral in the Midlands?” And, and then I feel quite macabre thinking about funerals. But, you know, I had to plan my father’s funeral. I kind of helped with my mother’s, though my father was trying to do it all by himself. I’m quite glad he let me in a little bit so I knew what to do a bit when he died. So, I suppose I have an understanding of things that have to happen. 

But then I found out the other day at a home meeting at my brother’s that if you’re moving someone out of a borough, then there’s different procedures that have to happen if you’re moving a body out of a borough and different things that have to happen, and if you are having a burial or a cremation like about the number of doctors that have to sign off the death certificate. Then obviously my brother has a relationship with some of the carers at the home and then I think about, you know, “If they wanted to pay their respects to him, how would I do that?” And thinking, start thinking about me bussing them all up to the Midlands or doing something down here and, I don’t know, my mind wonders sometimes. 

And it has, I’ve had to think about it as well recently because the home that my brother lives in has changed management and they’ve brought a waft of forms that, that need filling in, and obviously I’ve had to fill in most of them because my brother can’t. And some of them were about end of life care, some were about what kind of funeral you’d like, things that, you know, most people don’t talk about to anybody. So having to kind of try and engage him about thinking about it but without trying to depress him, I suppose, is quite a hard thing. 

Because like, you know, when people, you know, some people will make off the cuff remarks to you about, you know, “When I go I’d like this song playing.” My mum did that. My, my dad said to me years ago about having a, a jazz band at his funeral and I arranged for that to happen. But I don’t really have any clue about my brother and what his wishes are, and he doesn’t really want to talk about it. And then you worry that you might not do the right thing. So I do, I think about, I suppose, that side. 
Alice doesn’t talk about dying to her friend, though all the professionals involved in his care regard him as being what she calls ‘end-stage.’ But she has tried in various ways to prepare him, and herself, for his death. She organised a party for him a couple of years ago, a big celebration which she talks about as a ‘living funeral’ which she says was ‘therapeutic for everybody.’ She sometimes tells him (he can’t talk now, but she thinks he can still hear her) that if he ‘is exhausted, don’t be strong just for me’.

Sometimes the expectation or the experience of profound disability leads people to thinking about ending their life. Some people talked about the option of assisted dying at the Dignitas clinic in Switzerland. John S thought his wife would be more likely to go into a hospice if ‘her situation gets worse,’ than want to end her own life. Alice said her friend had a ‘short-lived phase’ of wanting to end his life. Ian and his wife had talked, even before she had MS, about considering this in a future where either of them might be incapacitated. Kay thinks she ‘would have wanted to go to that clinic in Switzerland a long time ago, because I don’t think I would want to be like that,’ (disabled as much as her brother).
 

Ian and his wife are hopeful that her recent treatment for CCSVI will improve her condition. All the discussions and thoughts they’ve had about assisted dying are on ‘the back burner’ at this stage.

Ian and his wife are hopeful that her recent treatment for CCSVI will improve her condition. All the discussions and thoughts they’ve had about assisted dying are on ‘the back burner’ at this stage.

Age at interview: 57
Sex: Male
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We’ve actually said that if, I mean this was way before any of this came on board, that if either of us were in the situation where basically we needed, we needed care all the time, then we would consider this place in Switzerland and we should do that for each other. But of course you never think that this kind of thing is going to come on board.

That’s right. And you do have to activate that in some way.

Yes, absolutely, absolutely. But there’ll be a point that she reaches that she’s going to say, “I’m not doing this anymore.” Because she’s, she’s quite a, a strong-willed person. And she will, if she gets to the particular point where she said, “I’m not doing this anymore,” then we will do that, most definitely. Who knows? It’s a consideration. I know we say, we, do say it in a flippant manner, but there is an underlying theme there that should that particular position arise then it will have to be given serious consideration.

In terms of advance directives or..?

Well, put it this way, we haven’t even looked into that particular aspect yet. I mean there may well be, there, there, will be a point in the future. And certainly we don’t want to consider it at this particular stage. May-, maybe we’re just putting that to the, on the back burner. We want to try and get her mobility back to some sort of ordinary state. And if the, the operation that, that she’s had, you know, last year, not, not last year, this year is going to work, we don’t know if it’s going to. I don’t know what our expectations were of that, maybe that she’d miraculously get up and walk, you know, two days after the operation, but clearly it doesn’t work in that particular format. But we’ll see.
 

John is sympathetic to the idea that a person’s life might become a burden to them, but his religious background makes him wonder if it can be right to take your own life.

John is sympathetic to the idea that a person’s life might become a burden to them, but his religious background makes him wonder if it can be right to take your own life.

Age at interview: 63
Sex: Male
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We sat and watched a television programme the other night with Terry Pratchett and where one of the people he was talking, interviewing went over to Switzerland to Dignitas, a 42 year old suffering from MS. And my wife’s attitude was, far too young. I don’t, well I certainly aren’t in a position where that would be a possibility because there’s nothing that much wrong with me that can’t be controlled with tablets. If my wife’s situation gets worse and worse I would be very surprised indeed if she went down that line. She would be more likely to go into a local hospice for, if it was because of the pain or whatever and you know, that route. 

I think, we’re both baptised Catholics. Obviously this is a dreadful sin is to take your own life. Now I don’t think we think along those lines particularly. I think in terms of when is it right to do this? And it may be right… it may stop the particular person feeling pain at that moment. My wife has said the same, she said, “When, if you do that with the aid of Dignitas and you suddenly find yourself outside the Pearly Gates and St Peter’s standing there, and he says, “Oh, you’ve had that mate, you’ll have to go back down and do it all again. Only worse this time.” If you do sort of think there’s an afterlife, perhaps it isn’t really the right thing to do. There are better ways of dealing with it. 
 

Kay highlights a dilemma in the timing of decision-making for people who choose assisted dying. Her brother would now be incapable of making the decision.

Kay highlights a dilemma in the timing of decision-making for people who choose assisted dying. Her brother would now be incapable of making the decision.

Age at interview: 38
Sex: Female
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Obviously I’d miss my brother terribly. But at the same time I’d probably th-, I know what I’m going to hear a lot of already, I know a lot of people are going to say, you know, “He’s at peace now. He’s resting. He’s not in pain anymore and, you know, he’s, he...” almost like he’s better off dead. 

And maybe part of me would agree because I don’t, as I said, I wouldn’t want to be bedbound in bed with the way he is. I just wouldn’t want that. I watched a programme a little while ago, Terry Pratchett, where he was looking at Dignitas and the clinics. And there was a young man who wasn’t as disabled as my brother who had MS who, who went there and decided to, to end his life there. And part of me was like, “Well, you’re not, you’re not as bad as my brother. Why are you going yet? Why are you going now?” But if he got to the point where he was like my brother and then couldn’t make that decision, and so obviously he was trying to, you know, nip it in the bud. But whether he went too soon, I guess no one will ever know.
 

Alice’s friend was ‘very clear’ about wanting to end his life at one point but, she says, ‘he read the leaflets, then put them away.’ And, two years later, he is ‘content’.

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Alice’s friend was ‘very clear’ about wanting to end his life at one point but, she says, ‘he read the leaflets, then put them away.’ And, two years later, he is ‘content’.

Age at interview: 35
Sex: Female
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Some years ago we got leaflets on Dignitas and we talked about going to Switzerland and he did go through a phase of wanting to commit suicide but it was very short lived. He read the leaflets and that was it. The leaflets were put away. But the trouble is, this whole other issue, also he lost the use of his hands very quickly after that. So it would have been impossible anyway, or very, very difficult and certainly implicate other people much more. But yeah, that’s a strange thing that you can be very, very clear in wanting to end your life and then two years later, being very content. So imagine if he had gone for it but, you know, it’s clearly something to think about very early on.

Yeah.

If you lose the use of your limbs.

But is that right off the agenda for you both now?

Oh, completely. This is what’s so awful. I think that we’ve kind of, he’s lived almost too long. It’s like we’re into this stage now, which we didn’t kind of imagine would happen. 
Other people talked about whether the person with MS might want to commit suicide independently, and one carer talked about his own suicidal thoughts and feelings.
 

Dave has felt suicidal but has always decided against killing himself because apart from being, he says, a ‘coward. You don’t want to, because you’ve got somebody depending on you.’

Dave has felt suicidal but has always decided against killing himself because apart from being, he says, a ‘coward. You don’t want to, because you’ve got somebody depending on you.’

Age at interview: 73
Sex: Male
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Is there anything else that you think health and social care workers could supply by way of a service to you that they don’t?

Oh, how do you know you want something? They ought to stop saying we are going to help you and what they do is hand out leaflets or brochures and you have to get on with it yourself, that’s it. Maybe it’s good to do it but sometimes you don’t have time to do it, maybe they could assist you with doing some of these things, put themselves in. If one was an unmarried mother, even better an unmarried lesbian mother, maybe I’d get more help, but I’m not and therefore I’m seen, get on with it, he’s coping and that’s it, you know. And they ask you a question, one of the questions on the carer’s assessment, ‘Do you ever feel suicidal?’ You say, ‘Yes.’ ‘Oh, dear.’ That’s the end of it, ‘Oh, dear.’ On one occasion we were on a cruise and I thought, ‘Shall I jump overboard?’ And I thought, ‘No, no, no, no it’s cold.’ [laughter] I’m a coward! You don’t want to because you’ve got somebody depending on you and they depend on that, that you won’t harm yourself because you’re caring for somebody. So, they get away with it.
 

Mike is worried that his wife might be tempted to kill herself and they have agreed that he should look after her medicines to prevent her from taking an overdose.

Mike is worried that his wife might be tempted to kill herself and they have agreed that he should look after her medicines to prevent her from taking an overdose.

Age at interview: 51
Sex: Male
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Again, if this isn’t too painful, we’ve had a conversation together off camera about people choosing to end their lives because their experience of living with MS is more than they can bear. When you think about that, how does that have an impact on you?

It’s quite frightening. Yes, Jenny has had moments recently where she’s been up and down like a yo-yo. She has had moments, we’ve actually got to the stage now where most of Jennifer’s medication is not in the house. It’s up at my mother’s house and I tend to, I go up there once a week and make up her medication for all the week and basically I’m administering Jenny’s medication for her. I make it all up and I administer it on a daily, on a daily basis because you know knowing the way that Jenny has been feeling just, just recently it’s quite frightening. And, you know, I can’t fully understand it but I can understand where she’s coming from, you know, what she’s actually been through especially more recently you know with one relapse after another after another it, you know, I can understand that, you know, obviously she’s had some very, very down moments when she’s thought you know, “I don’t want this anymore”. It’s quite frightening.
 

Christine asked her friend directly if he ever thought about committing suicide, because he seems to be ‘on the depressive side.’ He said that he ‘wouldn’t want to do that,’ but she is not so sure that he wouldn’t.

Christine asked her friend directly if he ever thought about committing suicide, because he seems to be ‘on the depressive side.’ He said that he ‘wouldn’t want to do that,’ but she is not so sure that he wouldn’t.

Age at interview: 50
Sex: Female
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And when I’ve been with him, when we’ve actually been listening to music, the music has been on the morbid side, I would say, and I have asked him, when he was at his lowest moments whether he whether he would actually consider suicide and he said, “No, I don’t think I’d, you know, want to do that.” But there are times when I sort of seriously wonder because he’s, he’s sort of always sort of been on the depressive side anyway really. And I do understand about that myself because I used to be on the depressive side myself. I mean I have had, not exactly clinical depression, but I have had I’ve had one breakdown myself. It was ten years ago but I’ve had one.
*We are grateful to the MS Society for permission to use extracts from an internal document on ‘end of life terminology’ in writing this section.

(Also see ‘MS: dealing with emotions’ and ‘MS: feelings of loss, grief and bereavement’).

Last reviewed March 2020.

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