Having continued contact with family, friends and loved ones in the future was highly valued by all groups. The PWD and carers discussed the nature of caring and not
172 wanting to become a burden to their families. However, whereas the burden discussed by carers was subjective and based upon their current experiences and from the recent negative media exposure of care homes (BBC 2009), PWD had no perception of the sense of burden they generated on their carers and talked about burden as something that may occur in the future with little perception of the current situation:
[Burden]...only if I were totally dependent upon them...
Person with dementia 01 (NG2)
...well that’s what you get [to be a burden]...not there now...
Person with dementia 02 (NG2)
The PWD spoke positively about their families and their relationships with them, seeing the value of continued family contact. This was felt across all types of relationship:
spousal, sibling, children etc. However, the carers in NG3 often spoke over the person with dementia, pointing out that they did not want their children to find themselves in a similar position:
I don’t want to leave my son with things like that [making decisions and providing intimate care].
Carer 01 (NG3)
Spousal carers appeared more accepting of their role, whereas siblings or adult children talked of the overwhelming difficulties of caring. One carer experienced such stress that should she also be affected by dementia, she had told her children that she wanted to go into a care home. She did not want her relationship with her children to be damaged by burden or responsibility:
173 ...being a carer is difficult...it leaves some nasty memories...
Carer 02 (NG3)
The carers challenged ‘the system’ arguing that if health and social care were effective in supporting PWD and their carers, ‘burden’ would not be an issue.
3.11 Discussion
The summary of the main findings from phase one were that:
PWD find it challenging to consider their preferences and wishes for end of life
care.
Carers’ own preferences are influenced by current experiences of caring.
In dyads, the carers’ views tended to override those of PWD.
Both PWD and carers had difficulty with some concepts, for example, dignity and respect, terms often used liberally by professionals in health and social care settings and ACP discussions. PWD tended to think in a ‘concrete way’ and struggled to think about their future, as seen in previous research, and often framed their views solely in their present context (de Boer et al., 2012). Thus, albeit that recent research demonstrates some success in introducing the utility of ACP soon after diagnosis (Poppe et al., 2013), in practice, even people with early dementia may have difficulty in participating fully in ACP as to do so requires them to imagine their ‘future self’.
However, discussing death and dying generally requires us to confront deeply held social taboos whatever the disease process is (Mason et al. 2011). Fazel et al. (1999)
174 and Gregory et al. (2007) reported that MMSE scores above a cut-off point of at least 18-20 were required to make an ACP. However, most PWD participating in the NGs experienced difficulty with the concept of ACP despite having been diagnosed with dementia with a ‘mild’ severity rating, MMSE scores of at least 20 [mean 24.2; range 20-29] and over half having had further or higher education.
Consistent with other research (Reamy et al., 2011), carers’ own preferences were articulated within the context of their caring experience, which was often negative and influenced by adverse media coverage of dementia and by the nature and quality of their relationship with the person with dementia. Carers reflected on what their own future might hold based upon their perception of what they felt it was like for their relative to have dementia: in a care system currently under much criticism, with inadequate carer support and a future that holds a degree of uncertainty when dementia presents itself (Robinson et al., 2013).
Whilst carers acknowledged some situations that may require specific decisions (e.g., care home admission, tube feeding, resuscitation), they felt such decisions would be made by healthcare professionals irrespective of ACP and were beyond their own influence. During the period of conducting the groups, there were various contextual aspects of end of life care that were receiving negative media attention. The Liverpool Care Pathway (LCP) was receiving considerable media coverage, under public scrutiny and criticism because of the potential for its mismanagement (Devlin 2009; Millard, 2009). Carers of NG1, in particular, expressed concerns that this was a ‘short count to death’ and expressed mistrust of medical decision making at end of life, doubting their best interests would be of prime concern. The LCP has since been the subject of an independent review (DH, 2013a), chaired by Baroness Julia Neuberger, with the
175 recommendation that it be phased out within a six to 12 month period. The UK government readily accepted this recommendation. Whilst this action has been challenged by many within the end of life care field (for example; Sykes, 2013; Currow and Abernathy, 2014), public unease had been mounting for some time.
Thus, carers in this study felt that an advance care plan might not be a document that was sufficiently robust enough to enable their own preferences for end of life care to be enacted when their decisional capacity was lost. Conversely, if no advance care plan was made they felt that they may equally be subjected to poor end of life care through being placed on the LCP which they perceived negatively. Carers therefore desired absolute autonomy for deciding their own care if debilitating illness ensued, expressing a possible wish for assisted dying or euthanasia.
Despite evidence that ACP can contribute to the quality of remaining years in life-limiting conditions (Molloy et al 2000a), guide family members (Seymour et al., 2004), and take the ‘burden’ out of making end of life decisions (Horne et al., 2007), it may still have limited potential for addressing future issues, either because of a desire to live in the present or because the prognosis is unclear (Barnes et al., 2011; Low et al., 2011).
This work suggests that impaired cognitive function may bring additional problems, as PWD find it difficult to conceive of their future self and possible burdens that their illness places on those around them. This situation is further complicated by the frequent co-occurrence of physical illness with dementia, thus making it even harder for the person to imagine what medical care decisions need to be made.
Making treatment decisions for older people is difficult when they lose the capacity to tell us what they want: a person needs to feel trust in a family carer’s ability to make
176 such decisions (Piers et al., 2011) and need to rely on their family members to indicate to others what their wishes and preferences might have been (Aw et al., 2012). Often family carers may be petitioned as to the wishes and preferences of a person with dementia at a time of crisis or care transition, for example admission to a care home or acute hospital. Seeking ACP discussions at these highly emotional points can be less than suitable and carers can be reluctant to engage (Sampson et al., 2011). Some studies have explored levels of agreement between people with long-term illness and their family carers and indicate varying levels of concordance (Ahluwalia et al., 2011).
In a qualitative study of dyads involving heart failure, Retrum et al. (2012) found that lack of agreement could impair the ACP process (Section 1.8.6). This may well occur in dementia too.
Carer burden and distress were consistent elements that were threaded through the NG data with a sense of foreboding when attempting to look into the future for the person with dementia and also for carers themselves. In their study of ACP in the acute hospital setting, Sampson et al. (2011) found that carers viewed planning ahead as an impossibility and took a ‘one day at a time’ approach to decision making.
When a person with dementia has lost the ability to make their own decisions in relation to end of life care and treatment it is often the close family members who are first to be consulted: ‘What would he/she have wanted in this situation’? To ensure that we can be as certain as possible in the midst of uncertainty about (Robinson et al., 2012) there are various aspects of proxy decision making that require further exploration. In Chapter four of my thesis I explore carer factors that may be influential in their decision making on behalf of the person with dementia, and a carers ability to agree or predict the treatment preferences of the person with dementia.
177 3.12 Strengths and limitations of phase one
The use of NGs allowed each participant equal opportunity to contribute, supporting and valuing individual views. One group solely consisted of PWD as I was keen to hear their opinions away from their carers’.
The NG process was piloted for its clarity with a group of Admiral Nurses; however, it may have been more appropriate to have done so with a small group of PWD and carers to also seek validity of both process and content.
NG3 included PWD and their carers together so I could examine whether their interaction affected the ability of PWD to express a view. However, as this was only one group, the ability to explore this was limited.
Although the sample size was small and restricted to one locality, it represented a range of ethnicities, types of carers, living situations and levels of education (Table 3.1).
Although not necessarily generalisable, data were obtained directly from PWD and their carers’.
Although discussions did not cause overt distress, interaction in a group setting was limited and a ‘one-to-one’ approach might be more supportive. Carers tended to prioritise their own opinions, so we should be cautious if families speak for their older relatives, for example, if English is not their first language. However, without funding for interpreters, we were unable to explore this further.
When reflecting on the NG process, to enable participant’s to understand what issues they might want to consider, I offered the example that a priority might be to continue to
178 go to church each Sunday. Whilst no participant’s raised concerns, this example would not have been appropriate to all participants’’ given the potential for a wide range of ethnicity, cultures and religions. In conducting such a study again an alternative example would be employed.
The conclusions to the nominal groups (as for the conclusions to Chapter 1 and 2) will be presented in Chapter 7 which draws together all the conclusions of all elements of the thesis.
179 CHAPTER 4: PHASE TWO – AGREEMENT: A CROSS SECTIONAL