Themes relating to the research question (‘what matters to patients and their carers when planning for the future, with a focus on eating and drinking?’) emerged in two groups: those relating to the extent to which patients and carers appeared to know about the condition and its treatment (health literacy), and those relating to the extent to which they appeared to value involvement in advance care-planning (planning style). These are presented in more detail below, with illustrative excerpts from the dataset.
Theme one: Health literacy
Most participants characterised themselves as sufficiently informed about what may lie ahead for them:
Are there any issues that you would like, or would have liked, more information on?
P: No, because at the time they told us there was nothing. So they were quite up front about that, weren’t they [laughs] and so everything plus has been a bonus ever since, hasn’t it? [Carer of HD patient. R622].
P: No, I think everyone’s been honest. Yes, even in terms of the timeframes you’ve got, I think everyone has been very honest, yes [MS patient. P412]
However, this satisfaction was not universal. Some wanted more information on their condition and its likely progression, or about options for managing eating difficulties, particularly information about percutaneous endoscopic gastrostomy (PEG):
P: If we’d have had more information then, we would have been more prepared for things as time goes on [Carer of PD patient. R223].
P: They could do a bit more to be progressive in trying to explain to people what they’re about to experience. It’s quite shocking if you, you know, you’re looking at it for the first time [Carer of MND patient. R322].
P: Well I think I would have probably gone for the PEG earlier, if I’d have known. Obviously when the PEG was going in I weren’t that sure because I didn’t really know about it then, but actually having it done has made my job a lot easier. I mean, it was difficult feeding him/her before that, you know [Carer of HD patient. R622].
Participants’ ability to speak about their condition and potential future progression varied by disease group. Knowledge of prognosis appeared greatest in the HD, MND and PSP/CBD groups, with those in the Dementia and PD groups seemingly less able to articulate what lay in store.
Experts by experience
The HD group felt they had good knowledge of the condition because they had seen how it affected family members. They characterised this experience, rather than anything they had been told by healthcare professionals, as the source of their health literacy:
And at that point did they explain to you how the illness would progress?
Well I already knew that from his/her mother and his/her aunties and uncles and it was, you know, family members really.
So they didn’t need to explain anything...
Did they talk about issues with eating and drinking or is that something that you...?
Well no, because you didn’t really see that bit, you know, you didn’t really see that part of the relatives, you used to go and visit them but you didn’t really consider that and his/her aunty didn’t want a PEG, s/he stipulated that s/he didn’t want a PEG and obviously s/he had swallowing problems and died.
Yeah. So his/her aunty knew early on but s/he just didn’t want...?
P: Yeah, s/he didn’t want nothing like that, no, s/he didn’t want to be messed about [Carer of HD patient. R622].
So, at the time s/he was first diagnosed, did anyone talk to you about how the condition would progress?
P: We were quite aware of that … no, we haven’t really been told by anyone [Carer of HD patient. R621].
Well informed from the outset
Participants in the MND and PSP/CBD groups spoke confidently and fluently about prognosis, often using medical vocabulary. They identified the information provided by health professionals as the source of their health literacy:
…and did they speak to you about how the condition would progress?
P: Yeah. I mean that’s obviously part of the condition and that was always one of the things that [Consultant] and [Consultant 2] talked about in terms of the ability to swallow through the deterioration with the muscles. That was one of their biggest concerns about, obviously which would cause aspirational pneumonia, so they were very adamant about, you know, making sure that we did everything possible to ensure that we didn’t cause that. And they spoke obviously about the PEG and, you know, the benefits of the PEG [Carer of CBD patient. R523].
I: So when you saw the doctors at [Clinic] did they outline for you how the disease would progress?
P: Yeah. Yeah, I mean you get the kind of assessment that you would expect from a Consultant, and of course they have a Care Team there which you may be familiar with, so the moment they begin to think about something as serious as Motor Neurone, or whatever else it is, the Care Team are involved and they of course, they’re made up of a dietician, a speech therapist … there’s three of them, and you know, they go through the whole business in great detail. So, you know, you can’t fail to understand what’s going on and the support was very good at [Hospital] seen very regularly [Carer of MND patient. R322].
At that time, were you told about the progression of his/her condition?
P: Yeah, yeah, straight away he told us how, how it does progress but this seems to be progressing in a lot of ways different to the other people we see at the meetings, yeah? S/he still walks, most of the people we know are in wheelchairs and that, and s/he gets on quite well [Carer of PSP patient. R521].
However, being ‘well informed’ by clinicians did not predict the participants’ choices. For example, within the group of four participants diagnosed with MND, all four had discussed PEG with their care team but: one chose PEG feeding; one was strongly considering PEG feeding but died unexpectedly during the course of the study, and two were early stage and undecided.
In MS clusters, responses were more mixed. Some, much like the MND and PSP/CBD groups, appeared to have been kept fully informed by healthcare professionals:
At that point, did they explain to you how the disease would progress?
P: Yes, it was, progressing was quite rapidly, and, but they did explain the care needs for the future, and what would be needed. Yes, yes, they did explain it quite harshly, and that’s what I want, you know, they did explain it fully [MS patient. P412].
Others reported receiving little information from healthcare professionals, but were able to use other sources to develop their health literacy:
So who first told you that you may or may not get, swallowing disorders in the first place?
Well, it’s part of the progression of the disease.
And when did they first raise that with you? Was that at the time of your diagnosis or was that later on?
P: Nothing was given to me at the time of diagnosis, it’s all been picked up as it’s gone along. Various online chat rooms about MS, talking to other people with MS, common sense on these things and also I always have to treat my MS as something I’m going to look forward in the future dealing with, rather than leaving it, how you deal with it on a catch-up basis so it’s best to be informed [MS patient. P411].
However, others in the MS group described an apparent choice to remain uninformed, although information was available:
And at that point did any healthcare professionals talk to you about how the disease would progress?
P: The information was there, [Patient] chose not to want to know really, s/he... I think it took her/him ten years to take it in, and that was her/him. I obviously looked up what was going to happen and had much more of an idea but s/he chose to not know [Carer of MS patient. R423].
In contrast, participants in the dementia and PD clusters were less able to articulate their prognosis, rarely used technical language, and were sometimes hesitant in speaking. Unlike those in the MS group, who described choosing not to find out what lay in store; these participants appeared to have been offered less information than those in the other groups:
I: And Dr [Consultant] has explained how the condition will evolve in the future?
P: Um, not really, I haven’t really asked. At least I did ask, you know, I know that s/he’s on the lower scale of dementia, sort of, you know, not up here but down here. I’ve no idea, I think it’s different for... I don’t think they can say. I think that’s why I haven’t been told, they can’t really say … Because, you know, I’m not sure if s/he will lose his mobility or if s/he will become rigid or shaky or you know, like Parkinson’s or something like that, I don’t know [Carer of dementia patient. R121].
I: So when you were there [Clinic], did they talk about how the dementia would progress? Or the eating and drinking would either?
P: No. Nothing [Lay carer dementia patient. R122].
So has he talked to you about how the condition will progress in the future? Has the doctor explained……?
P: No. As far as he is concerned he doesn’t have an appointment with me for another six months [PD patient. P211].
And when they told you about that, did they tell you how about it might develop in the future?
P: No, not, it might not, it might just stay like it, so you know, I just carry on, and luckily it’s me left hand, me left arm, so I’m right-handed so it doesn’t affect me, it doesn’t keep me awake at night or nothing [PD patient. P212].
Theme two: Planning style
The extent to which participants expressed a wish to be involved in advance care-planning varied within and between the condition groups. Two main themes emerged: those who wanted to plan ahead and make their own decisions about care and treatment in advance, and those who preferred to live in the present, deferring decisions about future care. Some participants described using a mixture of those two approaches (with some switching preference as the condition progressed). For a small group of participants, the concept of care planning held little meaning as they did not perceive that there were any decisions to make.
Advance planning was used by some participants as a way of extending the zone of personal autonomy and involvement in decision-making beyond the stage when their ability to make decisions or communicate their wishes would be lost:
P: In the early days of the diagnosis we obviously discussed his/her thoughts, his/her wishes going forward, s/he made her end of life wishes well known, they’re documented. I think I understand everything that [Name] wants and I totally agree with some of the things that s/he wants but yes, we have discussed that [Carer of CBD patient. R523].
This group described a need for information about the kinds of interventions to support nutritional intake that might be considered as the condition progressed:
P: We needed it [information on PEG] as far as I’m concerned, I mean it’s all bad news….you can mope around but there is the practical side to the whole business, even if it’s your wife or husband, you need to know what, what’s about to happen and what can be done [Carer of MND patient. R322].
Some participants expressed a desire to be more engaged in the planning of care and were frustrated by the lack of information on offer:
P: That’s where it becomes quite frustrating ‘cos I’m doing my utmost to do the best for the wife, naturally, and there doesn’t seem to be that outside help to guide you and put you on a little bit further and with a bit more help [Carer of PD patient. R223].
However, the relationship between adoption of an ‘advance planning’ strategy and the need and desire for information was not straightforward. Some participants acknowledged a need for information but nonetheless did not want to be told everything:
P: We got information mainly at [Hospital] but it was very sort of top level and; ‘Here’s some information but we don’t have to talk about it yet, you know, we’ll talk about it when you’re ready and unless we have to talk about it before’. So it was handed to me, for me to decide when I wanted to talk about it….. I think we needed to know what lay ahead, but only at top level, and not to go into too much detail about anything that didn’t have an immediate or a near impact on me, certainly in the earlier days when you’re taking everything on board [MND patient. P313].
Furthermore, information from health professionals did not always seem to be an important factor in the advance planning process. Some participants made all their own care decisions in advance, in keeping with their personality and based on long-term values:
P: I mean that’s the way [Name] was, it may not be everybody’s way of doing things, but you know, as I said to you, s/he was very independent and s/he made his/her own decisions … so you know, s/he’s not the sort of person that’s going to, s/he’s going to rely on specialists to help him/her but s/he will be making his/her own decisions [Carer of MND patient. R322].
These decisions were not always consistent with the advice and information offered by healthcare professionals. One participant planned to seek assisted suicide. Despite receiving information about options to alleviate their concerns about a distressing death, they chose to end their own life before the condition’s natural conclusion:
So is there something particular that you’re frightened of in the progression, that makes you think you would like to end your life sooner? Or is there another reason you decided that you wanted to make the visit to Dignitas?
P: I don’t know because I spoke to [Consultant] last time about it. I was frightened of drowning in my own secretions, of choking to death. And he said it wasn’t like that, people usually slip away but, so, but I’m quite pragmatic about it because of this condition isn’t going to get any better. So I can’t see why prolonging it.
[Patient identity withheld for reasons of confidentiality].
For this participant, reassurance that the dysphagia that they feared most would not arise did not have any impact upon the decision to seek assisted suicide. The provision of additional information to correct a possible misunderstanding did not change the decision. The inference that the decision was actually grounded in deep-seated values, rather than anxiety based on a potentially mistaken belief about the way the condition would progress, was expressed by their relative:
P: S/he’s very practical, s/he’ll see it as the best thing all round for everybody, including her/himself; s/he said ‘I’m fed up with being like this’. S/he’s always sort of had her/his independence, s/he’s always worked, you know, had a good job [Carer of patient who chose assisted dying; identity withheld for reasons of confidentiality].
‘Take each day as it comes’
Some participants were hesitant to engage with, or discuss, decisions concerning their future care. Particularly in the early stages of illness they preferred to focus on the ‘here and now’, rather than thinking about problems that might lie ahead. Decisions about future care were deferred to a later date, sometimes in the apparent hope that the eventualities that they could plan for may never arise:
I: Did they discuss about how it [PD] might develop in the future?
P: No, not, it might not, it might just stay like it, so you know, I just carry on [PD patient. P212].
P: So, I mean, that’s going to be an ongoing problem now I suppose? Unless something happens in... I don’t know. I don’t know if that happens in the brain, that things stop functioning and they start up again? [Carer of Dementia patient. R121].
Some participants appeared to be aware of their prognosis, and of their developing problems with eating and drinking, but preferred not to focus on them. Sometimes this coping strategy was characterised as an active decision:
P: I work out how to cope with it; don’t go thinking too much in the future. But of course we all have people like Stephen Hawking in our minds, and think, ‘is that where we’re going to end up, looking like him?’…. ‘And if that’s what people visualise us as, where we’re going to end up, it’s a bit of a daunting prospect’ [MND patient. P314].
Others discussed their swallowing difficulties in a way that suggested they were aware of the problem but, perhaps unconsciously minimising or attempting to ignore it:
P: When I’m very tired I have to be more careful about my swallowing, and make sure that I chew my food thoroughly, but at the moment it doesn’t really affect me greatly … I do have episodes of choking when I’m drinking but other than that, no, it’s not a problem [MS patient. P411].
Finally, some participants characterised their reluctance to be involved in future care planning as normal or expected for people of an older generation:
So…. a will, but no plans about his/her care?
P: No, s/he said s/he knew I’d look after him/her, so I just left it at that. I don’t think people of that age like to talk about that, you know, it wasn’t done then, was it? It just happened [Carer of Dementia patient. R122].
For participants who did not wish to engage in planning for the future, information about prognosis was not always welcome. Some wished that the information about diagnosis and prognosis had never been given:
P: I would have rather they hadn’t told [patient] he had MND … If nobody told s/he’d got MND because s/he’d have just carried on thinking well, I’m getting old, I’ve got rheumatism, I can’t lift my arm, I can’t do this, can’t do that and s/he wouldn’t be stressed out and upset like s/he is, so [Carer of MND patient. R321].
However, the relationship between this strategy and satisfaction with the amount of information provided was not straightforward. For some, it was information about prognosis that prompted them to choose this strategy:
Did they talk to you then about how the illness would develop, or did they just sort of…….?
P: Well they did, a little bit, but in those days with Alzheimer’s Society, you know they don’t do it the same nowadays, there was a lovely lady … and she just said to me, she says [Name], “I’m going to be brutal”, and I said “Right, go on”, she said “[Patient]‘s fine now”, she says “Enjoy your time that you’ve got with him/her now because it will get worse and worse and worse” [Carer of Dementia patient. R123].
For others, awareness of the complex and uncertain future lay behind their reluctance to engage in advance care planning. They expressed a preference for delaying important decisions until they had to be made, because it would be too difficult to make them without contextual information:
P: I’d have to think about it at the time, because that means I wouldn’t want someone to cure me of pneumonia during a visit to A&E, if it’s just one of a succession of weekly visits to A&E, no, I wouldn’t want to be cured of pneumonia. But again, a person’s wishes should be taken into account [PD patient. P211].
P: No, I was asked about that [making advance care decisions] and I didn’t want to do it. I really don’t know how you can decide something like that [MS patient. P411].
Participants did not always use a single coping strategy. As their disease progressed, some moved between ‘taking each day as it comes’ and ‘advance planning’.
P: Well I did contact the MND Association up in [Place], I said, “Look, send me your pack and I’ll have a read,” and it was page after page, and as I explained to a doctor at [Hospital], it can be quite overwhelming, and he said, “Well that’s typical of charitable organisations, that they sort of paint a blacker picture, or tell you everything and you have to stand back and say, well is that relevant to me today, if that’s in the future we’ll worry about it in the future,” and this is how I think my wife and I have sort of come to terms with it, let’s live a day at a time, and we’ll navigate through sticky patches when we come to them [MND patient. P314].
An added complexity was that patients and their carers sometimes adopted different strategies:
P: I’ve started the Power of Attorney process but it’s with my husband now to finish it off, he’s a little bit of an ostrich, I think that’s fair to say [MND patient. R313].
P: Ah, me personally, yes, I would have done [made advance care plans], if that had happened to me I would have definitely chosen to do that, I don’t think [Name] is the type of person that would have done unfortunately [Carer of MS patient. R423].
Some participants expressed regret that they had not engaged with care planning earlier in the course of their condition. For decisions concerning PEG feeding, this lack of advance planning appeared to be connected with a lack of information about the options. Two participants had PEGs fitted at a late, or crisis stage, and both of their carers wished they had made decisions earlier:
I: So do you wish you’d had yours [PEG tube] fitted a bit earlier to stop those?
P: Yeah, it’s still a frightening thing but it could have been done in an easier time for his/her body [Carer of PSP patient. R521].
P: It was in the hospital, yeah, we made the decision. S/he went in, s/he had an abscess on his/her lung where s/he’d been swallowing food down the wrong hole … well basically s/he nearly died but the antibiotics kicked in and s/he was okay and then we had the PEG fitted in there, we had a lot of swallow tests and that done and then it was decided that the only way really was a PEG…. If I’d have known and s/he would have known I think we’d have had it a lot earlier [Carer of HD patient. R622].
No decision to be made
For some participants the concept of care planning did not make any sense, as they viewed the progression of their condition, and the need to accept increasingly invasive treatment in order to stay alive, as part of an inexorable process. Consequently, there was no sense that they were choosing between planning in advance, or living in the present and delaying making decisions about care until they could be put off no longer. These participants described just doing what it took to survive:
So is thickening your food and drink something that you would consider, despite the horrible taste?
Well, I’ll do that when I’ve got no choice really.
And what about PEG feeding?
P: It might be the only way to feed me [MS patient. P411].