Planning for deterioration and death

Receiving a terminal diagnosis can allow patients and their families to think about how they want to use their time. David (Interview 08) feels the family coped day to day, trying to make the most of his father’s remaining time. Una finds it difficult to plan anything in case her husband is unwell and she has to cancel the arrangements. A few made plans to do things they had always wanted to do. Some organised holidays or visited favourite places. Henry’s partner Jane was determined to be at her eldest son’s wedding.

Lesley and David recognise that their time together is limited so they are currently doing all…

Age at interview 66

Gender Female

View profile

And whether we like it or not, we both know he
has a limited future. We both know that. We both know that he’s going to run
out of drugs and you can’t die from having multiple myeloma but you can catch
something that you can’t throw off because it has eaten your immune system and
you don’t have the ability to get rid of it. And we know that, at some stage,
that is going to happen and we don’t know how long that is so we like to spend
time together, which is, I guess, why people get together in the first place. So
the fact that the house is spick and span and I’ve been out and done something
frees us up then to go somewhere and we load the two dogs in the car and off we
go. And that’s lovely, when we’re together doing that and I’ve had to,
probably, educate myself to that more than David has because David’s in the
four walls, whereas I’m out and about and his need to get out and about has to
be fulfilled because we don’t know how long that’s going to be.

So do
you think there’s, there’s more of a focus, really, on time?

Yes, there is. There’s more of a focus in
fulfilling things that you have always wanted to do and have never had time to
do and now we make time to do them together and if somebody says, Actually,
we’re thinking of going to Egypt next year. Would you like to come The answer
is, Yes And we will move heaven and three earths to make sure that that
happens because David’s always wanted to go to Egypt and our friends suggested
we should go together. So we will go and previously, we’d probably have said,
Oh, well. We’ll think about it There’s none of that now. It is, Yes, we
will do it and we will make it happen

Embed Print Transcript

Julie’s partner wanted to carry on as normal for as long as possible which Julie felt was a good…

Age at interview 58

Gender Female

View profile

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.

Embed Print Transcript

Many patients want to be cared for at home, which can sometimes mean making adaptations or moving home. Lesley and David had to come to terms with selling their house and moving to something smaller and easier to manage. Anne and Jim moved nearer to their daughter, who could support them. Jane had equipment delivered to support her husband’s care at home. Dick and Di obtained a social services grant to modify their home for wheelchair use. They moved out for three months while the alterations were made. In hindsight Dick thinks the disruption had not been worth it as Di only used it for a short time. Roger (Interview 32) decided against having a lift installed; instead he moved the bedroom downstairs and created a wet room. Savita and her husband built a suite of facilities in preparation for when his condition deteriorated. Depending on the extent of alterations, planning permission may be required.

Sue describes how moving the furniture ready for her dad to come home from hospital meant the…

Age at interview 63

Gender Female

View profile

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.

Embed Print Transcript

Patients sometimes talked to their carer about their future wishes. Some involved a health professional in these discussions and some carers talked to a professional on their own, or talked with other family members. Patients may choose to discontinue life prolonging treatments in favour of symptom control. Val knew her husband was struggling with his dialysis, so was not surprised when the doctor suggested stopping it. Heather asked her husband’s GP if unnecessary tablets could be stopped. Dick and Di felt it was important that she could die freely without intrusive medical interventions. Roger (Interview 30)’s wife Teresa told him that she would not want invasive ventilation.

Keith respected Pats decision that she didnt want further treatment. She felt it was too much…

Age at interview 49

View profile

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.

Embed Print Transcript

Cassie discussed what her dad wanted in terms of future care. She found the doctor very clinical,…

Age at interview 26

Gender Female

View profile

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.

Embed Print Transcript

There are several ways that people can plan in advance how they would like to be cared for at the end of their life:

Advance Statement (Statement of Wishes or ‘living will’)

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, but it should be taken into account by health and care professionals when deciding best interests.

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.

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. 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.

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.

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 Living with Dying- Information- Advance Decision section for more details about what is needed to make an advance decision legally binding.)
More information on all these options can be found at Compassion in Dying.
A decision not to be resuscitated can be included in an advance statement (‘ living will’). Theadora’s mother always wanted to be resuscitated. She would ‘have had an intervention for two more hours of life’. Georgina feels grateful that her mother’s hospice had a non-resuscitation policy. The ‘message in a bottle’ scheme is widely used to record medical information and contact details for vulnerable people who are being cared for at home. A sticker on the front door alerts the emergency services to the bottle which is kept in the fridge. Bottles can be obtained from GP surgeries, pharmacies, council offices and many other places (also see ‘The death itself‘). Una’s husband and Emma’s mother included their living will in this bottle. Carers may not always agree with the patient’s advance decisions’ Susan thought it was wrong that the doctors couldn’t help her mother because she had signed a ‘do not resuscitate’ order.

Savita and her husband have decided that they do not want him to be resuscitated, but Savita…

Age at interview 60

Gender Female

View profile

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.

Embed Print Transcript

Although Dick’s wife had an advance statement (‘living will’) it was not needed. Many years ago Anne and Jim made living wills. Jim has refused to have a PEG tube for feeding, which would prolong his life. After seeing a TV program together about assisted dying at the Dignitas clinic in Switzerland, Anne asked him whether he would like to go there; after some thought he decided he wouldn’t want to.

Maggie and Donald had discussed assisted deaths in Switzerland before his illness and agreed that…

Age at interview 57

Gender Female

View profile

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?

Yeah.

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.

Embed Print Transcript

Some people applied for a Lasting Power of Attorney which enables an appointed person to make decisions about the welfare, money or property of another person when they lose the capacity to make decisions themselves. Some people never needed this because their sick friend or relative was able to deal with their affairs right up to their death. The forms can be downloaded from the internet but Roger (Interview 30) wanted to ensure that his wife’s application was authorised by a solicitor because of her speech difficulties. However, it had been difficult at first to find a solicitor who would do it under the legal aid scheme.

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.

Tricia finds it helpful that her brother has power of attorney for their mother so she doesnt…

Age at interview 59

Gender Female

View profile

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.

Embed Print Transcript

Several patients decided to make or update their will after learning their diagnosis. Heather and Bill updated their wills free of charge in exchange for a bequest to a charity. Several couples had arranged ‘mirror’ wills leaving everything to the surviving spouse. When Henry’s sick partner made a will Henry decided to revise his own will and they discussed their bequests together. Ruth was able to write a will for her mother on the internet. Tricia is comforted to know that her mother wrote her will when she was well, so it is one less thing to worry about now. Although John (Interview 12)’s son Tim didn’t have many possessions, he wrote a letter detailing a few bequests, but it was mainly a letter of love, which gave John and his family tremendous comfort when they found it after Tim’s death.
Some patients expressed wishes about where they wanted to die (see ‘Thoughts about the place of death‘). Many patients also expressed wishes regarding aspects of their funeral. Some planned and pre-paid for their funeral. Others made their funeral wishes known in their will. (For more about funerals see ‘Practical things after death‘).
Some carers said it had been difficult to initiate conversations with their sick friend or relative about their impending death and its implications for the family. Many of those who did discuss it wanted to know how or when the death would happen, and some asked a professional. It is impossible for even experienced health professionals to accurately predict when death will occur (see also ‘The death itself‘). Some people spoke to us about how they had said goodbye to their dying friend or relative. Jane had told her children to tell their father they loved him; Fiona said goodbye to her mother gradually over time.

Dick and Di planned a formal, ritual goodbye, so they would not have any last minute awkwardness…

Age at interview 55

Gender Male

View profile

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.

Embed Print Transcript

Thoughts about the place of death

Research shows that most people would like to die at home if they had a terminal illness, with a sizeable minority opting for hospice care....