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.
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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.
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’.
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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.
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.
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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.
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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.
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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.
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.’
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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.
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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.
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(Also see ‘MS: dealing with emotions’ and ‘MS: feelings of loss, grief and bereavement’).
Last reviewed March 2020.
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