Planning for deterioration and death
- Age at interview:
- Lesley has been married to David for 19 years. She has 2 adult children and 2 adult step-children. Lesley is a self-employed teacher. Ethnic background' White British.
- Age at interview:
- Julie is a part-time teacher. Ethnic background' Ashkenazi Jewish/ North West African.
We didn’t talk about the fact that it was terminally ill. He came with a diagnosis from the hospital and said, “Here, read that.” And that was all we discussed. Then, because it just read, ‘palliative care’, a nurse came along to see him and I was sitting in on the conversations and at first said, “Get along.” Because the nurse wanted to talk about after life and things like that, which my partner wasn’t interested in. So they found a common ground whereby they could talk so they had, you know, the odd chat and the palliative nurse kept on insisting, you know, “You are terminal. You must write your will. You must do this. Where do you want to die? Do you want to die in the hospital? Do you want to die at home? Do you wish to go into a hospice?” And he would say, “I want none of that. Just let’s proceed as normal.” And that was how it went and then after two years, he’d had some radiotherapy and chemo, which didn’t work and after two years he began to get weaker and couldn’t go outside. So from there it was just a short period of going downhill for about maybe two and a half, three months.
Okay. You said that it wasn’t discussed, was it kind of a knowing between you or was it that you just didn’t accept that?
It was a knowing it was a knowing between us but also for him, “Well, I can, you know, walk across the road and get killed.”
So in many ways, I think that was a good attitude because he wasn’t mournful, you know, sort of saying, “Oh, I wish that I’d done this.” Or there was no sentiment about it. It was just, you know, it’s a fact of life. We’re going to have to get on with it and that’s it and it was something which was understood between, between the two of us.
And how was that for you?
I felt it, I thought it was quite good because I, I don’t think I could have coped with someone who was becoming very sentimental.
- Age at interview:
- Sue is a special needs teacher. She is divorced with 2 adult children. Ethnic background' White British.
So Dad arrived home three weeks later and the physios had already been to the house to assess the house beforehand. They live in quite a large house. They do have outside toilets but it was down quite a few steep steps, which my dad wasn’t able to access. So for my mum it was a huge change. The physio said that he wouldn’t be able to go upstairs, so we organised to have a bed put downstairs. A commode arrived. In fact, for the whole week before he came home the whole house was upside down, which for my mum was quite distressing because she’d been there, well, they lived in that house 54 years now. But we had to explain to her, and this is where my sister and I came in, that, you know, if she really wanted dad home she just only had that choice or it would have meant a care home. And because he seemed to recover from the stroke fairly well, not so much mobility or the incontinence side, but he became a little bit of old dad again. He was smiling and he, he seemed very grateful if you did anything for him and helped. So I think from that aspect, for him to have gone in a home, he would have deteriorated quicker.
We got him home and he, he himself decided he didn’t want to sleep downstairs. He obviously recognised the home as soon as he got back and he actually, struggled and tried the stairs. So we called the physio in the following morning and she said that maybe we could get support rails up the stairs, which she did, and that someone would have to be behind my dad all the time. My dad was a very tall guy and slim, not particularly overweight, and I think he was quite wiry so he was able to manage the stairs, and he seemed happy to be sleeping upstairs in the room, the bedroom he recognised.
Well, again the Macmillan nurse was extremely helpful. It was she who made, no, I don’t mean made, who gradually, conveyed to Pat and got her to understand that it was end of life situation. And from, I can’t remember the how, how what, what time it arose but Pat did say to me then, “I don’t want any treatment.” And I said, “Well, let don’t say that without thinking about it. Let’s together see what you feel as and when it becomes nearer, if you like.”
It then really got to a stage where the doctor, our doctor was here and he talked with Pat, made clear to her that there were improvements that whatever she may have heard or like, like experienced maybe with other people’s situations, that there had been some quite good improvements in the prospects of longer life. But also talked with her about, and again not with me, but I was here but he, he talked direct to Pat, the, strain of treatment because it wouldn’t she wouldn’t get that from her local hospital but would have to go to a more central, larger hospital for, for the treatment and said to her that, even that can be really wearing, disturbing make people feel that it’s too much and, and the, the additional length of life that you get may not, may, may be considered disproportionate to the kind of treatment that you’d have to undergo. And she said, “Well, it’s not that. I just don’t want to, to go through with this. I realised that it that I’ve got a short time to go and if it’s unlikely, therefore, that it can be extended by a considerable period then, and it’s not weakness on my part. I’m not doing this because I am I am weak or can’t.” Because she again, she was stoical person and she said, “I just don’t want to go through that kind of treatment if it’s going to be a short period of time.” She said, “I’ve read and I know of people who have said, ‘if I can only get an extra month or six months I’m prepared to do it,’ and I.” She said, “I feel that now that’s for me.” And then she said, “I’ve thought very carefully and I just don’t want that kind of treatment.”
So I was, I did I wasn’t censorious about it. I didn’t in any way feel that she was letting me down, no, not at all. I was I just felt that I didn’t it didn’t even occur to me to try to talk to her out of it because I knew that that’s what she wanted and I don’t think any, as I say, I don’t think it was any character defect and if there are some people who want to fight for a day or, you know, whatever but there are others, and I’ve talked to one or two other people, who now some of them, older people who say, “Okay. I’ve had enough.” You know, and are quite cheerful about it. I mean they’re not, not making a, a big issue about it but there’s a whole mass of us, a whole raft of people out there aren’t there, who say, “No, life, life begins at eighty.” You know, and maybe that’s for a lot of people. It could be for me but I, as I say, it didn’t it, it wasn’t something I went to bed with in terms of, of, “Oh, this is, you know, I just can’t bear this.” It was just one of saying, “Okay. That’s Pat. She’s made her decision. I respect it.” So that’s how it was.
- Age at interview:
- Cassie is single. She works as a counsellor. Ethnic background' White British.
Were there any family discussions about a plan for the end with your mum?
Yeah, my mum and I and my dad all sat down one day and said, “So what I’d like.” I said to my mum, “So I’ve had a look at what Dad’s notes are and when he’s supposed to go back to hospital. Dad doesn’t want to go back so Dad, what do you want to do? Do you want to go and have another scan? Do you want to see or do you want to just leave it?” And my Dad, “Yeah, I’ll have one I’ll have one more scan.” And I remember it was the day, one of the days when there was loads of snow. It was January 2009 when there was loads of loads of snow and nobody could get out their house and I called the hospital and got through to voicemail and I thought, “Oh, nobody can get in probably.” And left a message saying, “I just want somebody to ring me and let me know whether my father can be seen.” And we didn’t hear anything back and so I went back to my dad a week later and said, “I’m still waiting, Dad. I’ve been trying to get hold of them.” And he just said, “Just, just let, just let me die.” And I spoke to my mum and said, “I can keep trying.” And she said, “No, he just wants to go.”
So that was when we spoke to the doctor.
And then it was all very sort of clinical. It was sort of like a clinical way of just saying, “This is how we’re going to let him die now. We won’t do this. We won’t do that but we’ll continue to give him like fifty, you know, millilitres of this and continue to give him this pain relief but we’ll stop these ones.” So it was there wasn’t a lot of emotion attached to it really.
How did you feel about that?
I wanted, I suppose I wanted there to be a bit more emotion actually.
I think without there being any made it a bit easier not to break down because it was right, “This is how we do it then.” But I think it disconnected me from the reality of actually, from now on it’s a ticking bomb. It’s going to end and it’s going to slowly start to get worse and worse and worse and he’s going to drift away more and more. And there was something about making it quite clinical that sort of disconnected me from any real or raw emotion or numbed me to it perhaps. And I think sometimes I think I did want to just scream and just say how I really felt and ask my mum how she felt and ask my dad and ask them what they wanted and I kept it all very well packaged and together and organised.
Advance Decision to Refuse Treatment (ADRT)
An Advance Decision allows a person to make a legally binding refusal of medical treatment in advance of a time when they lose the ability to make the decisions for themselves (Mental Capacity Act 2005). It can be used to set out the specific circumstances in which a person would not want a treatment to be given, or when a treatment should be stopped. It can be used to refuse any treatment, including life-sustaining treatment such as resuscitation, breathing machines, antibiotics or feeding tubes. An Advance Decision will only come into effect if a person loses the capacity to make the decisions for themselves. (See Compassion in Dying for more about advance decisions.)
There is no requirement to use a solicitor to make an advance decision. Many solicitors offer this service, although there is likely to be a fee. Advance Decisions do have to contain certain wording to be legally binding and therefore it is best to follow a template form. Compassion in Dying provides an advance decision form free on their website. (See Living with Dying- Information- Advance Decision section for more details about what is needed to make an advance decision legally binding.)
Another part of what people have referred to loosely in the past as a 'living will' is now called an Advance Statement. Though some people use the term Advance Statement interchangeably with that of Advance Decision they are NOT the same Advanced Decisions are used to refuse specific treatments in the future and are legally binding Advance Statements (see below) are a general statement of what a person wants and what is important to them. It is not legally binding like an Advance Decision but it should be taken into account by health care professionals when deciding what is in a person’s best interests.
Advance Statement (Statement of Wishes)
An Advance Statement can be a written document (such as a letter making their wishes known), a witnessed oral statement, a signed printed card or a note of a discussion recorded in your medical records. It is a general statement which contains information the person feels is important for others to know. It will help people involved in their care to understand what they want and what is important to them if they cannot speak or make decisions for themselves. It is not legally binding like an Advance Decision, but it should be taken into account by health and care professionals when deciding best interests.
As Compassion in Dying explains, an Advance Statement can cover any aspect of a person’s future health or social care such as:
• how you want any religious or spiritual beliefs you hold to be reflected in your care
• where you would like to be cared for, for example at home or in a hospital, a nursing home, or a hospice
• how you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on
• concerns about practical issues, for example who will look after your dog if you become ill (Compassion in Dying 2014)
Advance Statements can also be used to nominate someone who you would like to be consulted at the point at which a decision has to be made But if you wish someone else to make health decisions on your behalf you should appoint a Lasting Power of Attorney for Health and Welfare (see Compassion and Dying’s website for more information on Lasting Power of Attorney).
Advance Care Plans or Preferred Priorities for Care (PPC)
An Advance Care Plan is another optional document for people to use to help think about, talk about and write down their wishes and preferences during the last year or months of their life. It will normally be made in partnership with a person’s health team when they enter the end-of-life phase and not before, unlike Advance Decisions, Advance Statements and Lasting Powers of Attorney. Advance Care Plans are used to record care and treatment wishes and should be attached to medical notes and easily accessible to those involved in a person’s care. It aims to help them and their carers plan their care when they are dying. This means that everyone involved in their care knows how that person wishes to be cared for. The most commonly used type of end-of-life care plan is called the Preferred Priorities for Care (PPC) document. If a person has made an Advance Decision, Advance Statement or Lasting Power of Attorney this should also be noted in their Advance Care Plan.
Advance Care Plans are not legally binding, however, doctors and people involved in their care will know what is important to them and will try to follow their wishes and the document will be taken into account when deciding what is in their best interests. The kinds of wishes you can set out include:
• Where you want to receive care
• Where you want to die
• Who you want to be with you
• Values such as religious belief or dietary requirements
- Age at interview:
- Savita is married with two grown up children. She is a retired Project Analyst. Ethnic background' Indian.
You were talking about the future. Had you thought it through?
Yeah, first of all, first of all about his health. His personal health. We’ve discussed doctors keep asking us about, you know, if he was to arrest then what do you want done? And up to last year, the answer used to be, “Of course we want to revive him, you know, of course, we want to resuscitate him.” Because he had a quality of life but since he fell ill last year April/May, he had a bad attack of pneumonia so and then, since then, he has like gone downhill a bit more and now he’s, he’s not able to do what he was able to do before. So we’ve decided that if he arrests then we’re not going to resuscitate him. That is the idea but I’m sure, when it happens, it might be a different instinct at that time, so I don’t know. And then we’re assuming again that he’ll be the first one to go but I think the way he has recovered from last year, I’ll think he’ll go on forever.
- Age at interview:
- Maggie was married to Donald for 33 years. She has 2 step-children and 5 grandchildren. Maggie was a medical secretary. Ethnic background' White British.
We were still waiting for the biopsy. It was set for the Tuesday. When we got in Tuesday afternoon, it hadn’t happened. Donald was attached to a nebuliser. He had a very, very bad chest infection and there was some problem with his heart rhythms. In fact, they were so worried that they called us in to a side room, the family, my step son was there and I was and my sister-in-law, and they asked us whether or not, in the event of Donald deteriorating, did he want him to be resuscitated. So we said, we’d thought about it, and we said no, we didn’t in view of the brain tumour.
You, you mentioned about your joint decision with Donald not to resuscitate?
Had you discussed that previously? Was that something that you had talked about?
I knew what he, I knew what he would want. We were we were always great Holby City and Casualty watchers and we’d see items on the news and we’d always said that if either of us had anything terminal then we didn’t want to be, we didn’t want to linger.
You mentioned a trip to Switzerland. Had you actually, I know you mentioned it in passing, alluded to the assisted deaths in Switzerland, had there been thoughts about that at the time?
Well, Donald said that, we used to watch Holby City and there was a storyline there and, and he said to me he wanted to go to Switzerland and, in actual fact, if we’d had, if the prognosis hadn’t been so late, if they hadn’t misdiagnosed the tumour, yes, then we would have considered it. Donald probably would have wanted to and I wouldn’t had, well, I say I wouldn’t have had any objection. Obviously, I wanted him to live but if he wasn’t going to live I wanted him to die with dignity. So yes, if we could have done that I would have been prepared to do that and the, and the kids, definitely, were a hundred per cent with me in that. And, in fact, I’m going to make a will I’m going to make a living will so that the same thing doesn’t happen to me.
Maggie and Donald had organised power of attorney when updating their wills. Savita has power of attorney for her husband and finds it a strain looking after his finances as well as running the house and caring full-time. Lesley and David have not thought about advocacy as they tend to deal with things as they happen.
- Age at interview:
- Tricia is married with one grown up son. She is a retired clinical nurse specialist. Ethnic background' White British.
I mean we had to pay for all this, that’s the other thing isn’t it? My brother in [town name], he’s an accountant so he, there’s lots of forms to fill in and he got power, power of attorney, or whatever they call it nowadays, so he was sorting out her money.
Yes, that so that really shared the burden. I don’t know if I could have been able to manage the financial aspects of it as, as well as the practical everyday things I was doing for Mum. So he took that off my shoulders so I would go out and buy all the shopping for Mum and then send him the bills so that he could reimburse me, that sort of thing.
And I’d have to buy obviously things for Mum you know, underwear or whatever, you just, but he would just reimburse me for that. But the main thing was I didn’t have to worry about it. He could he could sort all that out for me and he was really good. I mean he’s an accountant. He works full time. He has to go to different companies so he couldn’t come down every weekend but he’d come down as much as he could and that was really helpful to have somebody else doing it.
- Age at interview:
- Dick is a local government officer, widowed, with 2 adult step-children. Ethnic background/nationality' White British.
And so Di and I decided to, to say goodbye you know, almost in a formal ritual way. So that there would be no sort of last minute you know sort of longings and clingings on between us. So we, we had a one evening when she was lying in the bed and I was sat down beside her. She was sitting up and I just talked a bit about how we first met. And then we said goodbye. And I gave her a last kiss, a last lover’s kiss, I kissed her again afterwards but that was the last time. And that was the most, of all the difficult moments that was the most difficult, but I am so, so glad we did it, so, so glad we did it. It was, it was, it just was moving and just very meaningful you know, it rounded off our relationship. And so we were able to then continue and look after her until her death without any kind of, that awkwardness that emotional difficulty, you know, with that a long drawn out goodbye might’ve, might’ve engendered.
Last reviewed September 2014.
Last updated September 2014.