We interviewed 24 family members. Demographic information and relevant patient data is presented in table 2.
Table 2: characteristics of family members (participants) and the patients
Characteristics of family members (participants) n=24
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Mean age in years (range)
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62 (32-75)
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Gender
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8 male, 16 female
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Relationship to the patient
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3 partners, 19 children, 2 others (cousin, sister)
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Ethnicity
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All British white
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Occupation
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13 retired from work, 11 still working
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Characteristics of patients (n=24)
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Mean age in years (range)
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85 (55-101)
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Gender
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7 male, 17 female
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Occupation
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22 retired, 2 working
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Functional status prior to the stroke
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11 independent, 13 required care (either a package of care at home or in a care home)
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First stroke
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23
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Had community do not resuscitate order (DNAR)
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7
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Had pre-existing major comorbidities including dementia, heart failure and renal failure
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11
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Family members’ decision-making regarding treatments on behalf of the patient admitted with major stroke lay on a spectrum. At one extreme, family members (the majority) described deciding not to initiate treatments from the outset. In the middle of the treatment decision-making spectrum, were family members who initially asked for all treatments to continue but later decided that life-extending treatments were no longer appropriate. At the other end of the spectrum were family members who wanted all treatments to continue at all costs.
Below, we will consider the factors determining these different decision-making approaches. We will then explore how the different approaches adopted by family members seemed to influence their early experiences in hospital, and their accompanying information and support needs. Where possible, we will report our findings based on where family members were on the treatment decision-making spectrum we have identified.
Reflecting on patients’ health pre-stroke, and preferences for life-extending treatments
Family members who had decided not to initiate life-extending treatments
Family members at one end of the treatment decision-making spectrum described how the patient who had been admitted to hospital, many of whom in their eighties or nineties, already had chronic progressive conditions (e.g., dementia and arthritis) prior to their stroke. They described how, over the years, these conditions had resulted in gradual decline in their health and quality of life. Hence, family members noted how these patients had not been fully independent prior to stroke and how some had either lived in a care home or had been reliant on others for aspects of their care, such as washing and dressing. Family members further noted how this dependence on others had been a source of frustration and distress to the patient.
For example, FM01, the family member of P01 noted how P01 had various chronic medical conditions including arthritis and heart disease, and although had lived at home, had needed carers to come in four times a day. FM01 also described how P01’s dependency on others had led to P01 being unhappy with life and extremely low in mood:
‘P01’s depressed… every time I go up P01’ll say to me I don’t want to be here, [name removed]. I seem to get it every week In fact...... P01 had said to me I love you but I want you to put the pillow over my head...’ (FM01)
According to these family members, which included FM01 and FM02 (who is quoted below), patients’ increasing frailty and dependence on others had meant that, in many cases, they had indicated their preference, either to their family or their doctor, for not wanting their already poor quality of life to be extended:
‘Well, P02 has been very unwell for the last nine months now. P02 had caecal carcinoma, so we have been involved with the hospital for a long time. So, we have had all the discussion about, what interventions P02 would want, so...I was in no doubt about what P02 wanted, which is not much.’ (FM02)
Many of these family members also reported how the patient had thought ahead to a circumstance where a decision might need to be taken regarding resuscitation:
‘P03 already has a DNR in place. PO3’s a very strong [gender removed].. P03 knew...well told us this is what...if it comes to a point where all the numbers stack up against P03, and finds requiring a DNR, which P03 wants, that would be the line to take. Do not resuscitate’. (FM03)
Family members who had decided to withdraw life-extending treatments over time
Family members who were in the middle of the treatment decision-making spectrum described how, although the patient had generally been quite old (late seventies or early eighties), they had been determined and able to maintain moderately independent lives. This included FM04 who described how P04, in [gender removed] eighties, had continued to lead a busy and active life right up to P04’s stroke:
‘When we got to 80, and [name removed] retired; well, P04 continued to work whenever P04 got the chance – P04 couldn’t retire – and what P04’s done since P04 was 80 is chopped wood and split logs…and even on Sunday, the day before this, P04 was working splitting logs. So P04 was very, very active and very strong’. (FM04)
FM05, likewise, described how P05 had been very determined and, despite having had multiple health problems and hospital admissions, had only needed minimal help to live independently:
‘Well, P05’s physically very strong, mentally very strong and P05’s had things before which P05’s come back from, in the hospital, heart attacks and quadruple bypass surgery and so on and P05’s quite tenacious about life in general. We just do some shopping and cleaning for P05.’ (FM05)
In keeping with their relative independence, family members noted how they felt that the patient had not generally thought about a circumstance where they may be left significantly disabled in any meaningful way. Hence, as FM06, the family member of P06 in [gender removed] eighties noted, any comments the patient had previously made which had alluded to treatment preferences could not necessarily be interpreted as their true preferences, because they felt that these individuals had not properly considered a future situation of critical illness and/or significant disability:
‘P06’s friend had a stroke and went into a home…and that allowed me to introduce the subject of what would you like to do in the long term if you weren't able to live in your own home? And P06’s response was, oh, I've never really thought about it. But well, if I couldn't stay in my own home I'd probably want to come and live with you. But I said that won’t be possible as I work full time, and P06 says ‘oh well, I’d go to a home then.’(FM06)
Family members who had asked for all treatments to continue at all costs
The minority of family members at the other end of the treatment decision-making spectrum reported how the patient had been relatively young and independent prior to their admission. Hence, family members reported that they did not feel that these individuals had considered a situation of critical illness and, therefore, they were not aware of them having articulated their own wishes for treatments in a situation where they might be left significantly disabled. This included FM07 the family member of P07 in [gender removed] 50s:
’Not really something that P07 would speak about; like, we like to get away every now and again, sort of, just we go camping and stuff like this; we’ll walk at weekends. It’s not really something that …I don’t think P07’s thought about the, sort of, long term’. (FM07)
Early hospital experiences and accompanying needs
Family members who had decided not to initiate life-extending treatments
Family members of patients who had already been physically dependent before the stroke, described how these patients had had multiple previous hospital admissions and therefore, how these previous experiences had made it easier for them to understand and accept that the patients’ prognosis might be very poor. For instance, FM08, the family member of P08 in [gender removed] nineties who had had a previous stroke, described how FM08 was familiar with being in hospital and was accepting of the fact that P08 was very unwell and might not survive:
‘I mean, we kind of predicted that this was maybe the way it was going to go with this second stroke P08’s had, the second time P08’s been here; so there’s a bit of history, so it’s easier for all of us to understand the predicament we’re in’. (FM08)
Given these experiences, and their confidence in knowing what the patient would have wanted with respect to life-extending treatments, these family members reported how they had determined that initiating such treatments would not be in the patient’s best interests. This included FM09 who described how he had considered P09’s preferences and had concluded that the situation P09 was now in (significantly disabled and requiring 24 hour care) would not be the kind of life P09 would want to endure:
‘P09 said P09 did not want people looking after [gender removed] and I think the point with P09’s situation is that massive stroke – it’s unlikely P09 will recover from it. If P09 does recover …P09’s going to need full-time care, so that’s…for P09 that’s not an option; P09 wouldn’t want that.’ (FM09)
These family members thus described how they had already decided not to initiate life-extending treatments even before the doctor had provided their opinion on the patient’s prognosis. Hence, as FM10, the family member of P10 in [gender removed] eighties, described, a discussion with the doctor was often used to justify a decision that had already been made, rather than to arrive at a decision:
‘So, we've (referring to FM10, P10 and family) been very open about it and feel very strongly that no prolonging of life, given the quality of life that P10 has. So, that was the conversation I had with the consultant and it was rather nice and refreshing that the consultant was very open to listening and in total agreement with that, and also being quite honest as to the implications of the stroke, in terms of swallowing and the options, and things like that’. (FM10)
Family members who had decided to withdraw life-extending treatments over time
Family members of patients who had been moderately independent and had not formally expressed their preferences for life-extending treatments, described having been shocked and distressed by the diagnosis of a major stroke with poor prognosis. This included FM11 who shared [gender removed] astonishment at how, on the same day as the stroke, P11 had been leading a group tour of a historical site:
‘Especially since P11 was, you know, completely fit and healthy one day, and, well, the same day, just suddenly, wallop. It was completely…changed P11, you know. So, yeah, it was a bit of a shock to the system’. (FM11)
These family members discussed how, because of their shock and distress, and not really knowing what the patient’s preferences were, they had initially felt that they could not withhold any treatments that might have given them a chance of survival:
‘So after two days of deterioration, so Doctor [name removed] said, what is your position on treatment and antibiotics; and I didn’t really have…I didn’t feel that I was in a…couldn’t not doing treatment. So I was trying to think about what would P12 say. P12’s really committed to life; so I said, well, I think if you felt it was okay I think P12 would want, wants to get better, P12’s not ready to die’. (FM12)
Having initially asked for all treatments to be given, these family members reported how, over the days which followed this decision and as they got over their initial shock, they had reassessed the situation the patient was in and gathered evidence to make further decisions about (withdrawing) treatments. This included having discussions with family and friends about what the patient might have wanted with respect to treatments and future quality of life:
‘And…initially my view was that because I didn’t have enough medical knowledge, I thought that feeding P11 and giving the antibiotics and the other medication, we would start to see an improvement. And, you know, I had a hope…whether it was a forlorn hope or not that the treatment would have an effect. But P11’s condition got worse- I’d spoken to various relatives and various friends of P11 and explained the situation and all of them said, oh P11 wouldn’t want to carry on living like that.’ (FM11)
They also described how such discussions had jogged their memory about situations where the patient had previously made informal comments about life-extending treatments or surviving with disability. They then reported how these remarks had led them to conclude that the patient would not have wanted to have been kept alive by tube feeding or if they needed full-time care. For example, FM13 described how P13 had been the main carer for [gender of partner removed] who had had a stroke, and had asked that no life-extending treatments be given to [name and gender of partner removed]:
‘I don't think P13 would be very happy to be constantly fed and kept alive with tubes. My parent [gender removed] died with a stroke and P13 said the same thing, [gender of partner removed] wouldn't want this, wouldn't want that, wouldn't be happy if couldn't do XY and Z. So P13 was probably the most calm out of the whole family when [partner of P13] died.’ (FM13)
Many also described how, when they were visiting the patient in hospital, they had observed them making gestures, such as removing oxygen masks and feeding tubes, which they interpreted as them wanting to reject these treatments:
‘I think a lot of it was informed by the fact that P11 kept taking the feeding tubes out … And…just other signs. I mean, as P11’s family member [gender removed], I know P11’s facial expressions. And I just got the impression looking at P11 that P11 really wasn’t happy in the situation that P11 was in. P11’d had enough and wanted it come to an end. P11 wouldn’t want to be in a care home lying there, you know, effectively unable to do anything. And I think P11 was telling us that by removing the feeding tube and… telling us again by removing the oxygen’. (FM11)
While reflecting on the situation, and realising that the patient might not survive the stroke, many of these family members described how they had moved away from their initial hope that the patient would recover to a more pragmatic approach of looking for potentially realistic information from the doctor on the patient’s likely (poor) prognosis. They then described how they used this information to decide on the appropriateness of (withdrawing) various life-extending treatments:
‘Well each time a decision came along, I sat down with either Dr [name removed] or Dr [name removed] in the main and the main decision was on feeding and whether they should persist with it. So…yeah, I was given information. I asked them questions. We came to a judgment...’ (FM11)
Although these family members described how, having reflected on the situation, they had decided that withdrawing treatments had been appropriate, they also noted how this process of decision-making (and treatment withdrawal) had been very upsetting for them. Some expressed how formal psychological support from hospital staff might have been helpful to them during this distressing time:
‘You know, this is hard, very tough… some, kind of, counselling service available, preferably with people with some medical knowledge’. (FM11)
Family members who had asked for all treatments to continue at all costs
The minority of family members, where patients had been young and independent before the stroke, described how they had felt shocked, overwhelmed and emotionally unprepared for the situation they now found themselves in. For example, FM14, the family member of a previously independent [patient gender removed] in [patient gender removed] sixties, described how FM14 and [FM14’s parent- gender removed] had felt helpless and extremely distressed seeing P14 in hospital in a physically dependent and agitated state:
‘I saw P14, my [parent- gender removed] was in shock basically. It was quite upsetting to see P14 being sick and looked like P14 was not comfortable. It just felt yesterday nobody was helping P14 to try and get this bleed under control and trying to get P14 back. So it’s, kind of, upsetting [sounding upset].’ (FM14)
These family members expressed how, while feeling extremely distressed, they had looked for ways to maintain hope that the patient would survive. For example, FM14 described how FM14 thought back to instances in the past where P14, based on P14’s determination to improve, had recovered well from minor illnesses. FM14 expressed how FM14 felt that, based on these previous situations, the current situation P14 was in would be one from which P14 would be able to pull through:
‘I think P14 would cope with a lot. P14 can cope with a lot. P14 did have an operation on P14’s arm and had to get a plate put in and they did say to P14 that P14 would only get…likely 45/50 per cent usage. But P14 pushed on and pushed on and got 90 per cent usage in P14’s arm. They say P14 would only manage to get arm to here [lifting arm up from the table]. P14 can actually get arm to there [extending arm to 60 degrees]. And, you know, P14’s a determined [patient gender removed].’(FM14)
In a related example, FM15 described how FM15 had looked for information from the doctor that gave FM15 hope that P15 would survive:
‘To have heard from the doctor when [doctor gender removed] had said to us, you know, some people will survive, kind of, gave us a bit of hope; like, well, there is hope.’ (FM15)
In their situation of extreme anguish, they expressed how they thought that all treatments should be given to the patient to promote the possibility (however small) of them surviving the major stroke:
‘When it’s a family member like you don’t want them to withdraw treatment, you want them to give a 100 per cent and keep going no matter what. If a patient needs to be fed through a tube then they need to be fed through a tube and I don’t think that’s a decision that should be given to the family. It should just be...it should just happen’. (FM15)
These family members also expressed how they felt isolated at this difficult time and reported that emotional support would have been helpful:
‘[FM14’s parent- gender removed]’s not coping, we were just left, left like that. There’s no one…Some sort of support would have been helpful, you know…but there was nothing..’ (FM14)