Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs

We conducted a mixed-method study, using a deductive sequential strategy [24]. Firstly, we conducted a cross-sectional nationwide quantitative survey among GPs and family carers in the Netherlands in 2011. Secondly, we held qualitative interviews among a selection of carers in order to explore the answers given in the quantitative survey in more depth.

The mean age of family carers (n = 74) was 62, with a range from 40 to 86. About two thirds of them were female and 41% were employed. The relationship to the patient was that of partner (70%), daughter/son (19%), sibling (4%) or other (7%). The mean age of the GPs (n = 194) was 50, with a range from 31 to 64; 57% were male and 68% had been trained in palliative care. In the qualitative part of the study the mean age of family caregivers (n = 18) was 59, with a range from 44 to 82. Furthermore, 83% were female and the relationship to the patient was that of partner for 72% of them and daughter/son for 22%. Of the18 interviewed family carers six (33%) experienced a fairly heavy to severe burden in the second and third months before death and twelve (66%) one week before death.

The percentage of family carers who experienced a fairly heavy to severe burden increased significantly from 32% (in the second and third months before death) (CI: 22%-45%) to 66% (one week before death) (CI: 54%-77%) (not in tables). The increasing proportion of carers who felt a fairly heavy or severe burden as the patient came closer to death was often explained in the interviews as due to an accumulation of symptoms and physical deterioration as the patient’s death approached; therefore the patient needed more care (Table 1, quote 1).

The overall degree of burden many family carers mentioned could on the one hand be perceived as severe while on the other hand they found it rewarding to be doing something for their loved one; giving good care was the last contribution they could make (Table 1, quote 2). Because of this rewarding feeling, some carers did not describe the burden as fairly heavy or severe in the questionnaire even though they said that they were putting a great deal of effort into caring for their relative.

Of the family carers who felt at least some burden, most experienced emotional burden during the three time periods (85%, 92% and 95%, see Table 2). In the interviews, many carers said that knowing the relative was going to die made it an emotionally burdensome period. They felt the loss that was approaching when they looked at their loved one (Table 1, quote 3). Some of the carers did not feel a severe emotional burden because their relative had become very old with deteriorating health; in the carer’s opinion their time had come to pass away (Table 1, quote 4). Also, many family carers mentioned that they felt an emotional burden from watching the patient’s suffering. This was not only due to the accumulation of symptoms in the patient, but also due to feeling powerless when seeing the social, mental and physical identity fade away (Table 1, quote 5).

A significantly smaller proportion of family carers experienced a physical burden in the three time periods (25%, 27% and 29%, see Table 2). Care was mostly felt to be a physical burden when the patient was bedbound and needed care in the form of bathing, dressing and toileting. Carers also mentioned the burden of interrupted sleep, communicating with professionals and family, monitoring the patient and being available 24 hours a day.

Across the three time periods, burden was not perceived to be a problem for 75% of family carers, although one third felt a fairly heavy to severe burden in the second and third months before death and two thirds of them felt a fairly heavy to severe burden in the last month before death (not in Table). In the interviews, many family carers said that it was normal to care for and support their partner or parent because previously the loved one had cared a lot for them, and therefore the burden did not feel like a problem (Table 1, quotes 6 and 7). This principle of reciprocity was a view held by many family carers but not all of them. The burden was perceived to be a problem when the caring and interrupted sleep continued for a long time without there being a clear idea when it would end.

For family carers’ age, gender, relation to the patient, employment of family carers, number of family caregivers, number of GP visits and received nursing care no significant association was found between family carers with a high level of burden and a low level of burden during the second to fourth weeks before the patient’s death (Table 3). For the other two time periods, one week before death and second and third months before death we found no significant associations (not in table).

GPs were more likely to assess family carers as having a fairly heavy or severe burden than the family carers’ self-assessment (Figure 1). In the three periods, the assessment of the burden by GPs agreed with that by family carers in 32%, 35% and 30% of cases respectively (Table 4). A large proportion of GPs estimated family carers’ burden to be higher during the three periods (35%, 41% and 47%); the opposite of this, a lower estimation of family carers’ burden, was found for 30%, 24% and 24% of the dyads respectively. The level of agreement was poor at two to three months before death (Kappa = 0.19) and poor at two to four weeks before death (Kappa = 0.13). No weighted Kappa coefficient could be calculated for the final week because observed concordance was smaller than mean-chance concordance.

In a multivariate analysis of patients who spent most of the time at home, after correcting for age and living alone, no significant association was found between the GPs’ assessment of the degree of family carers’ burden during the second to fourth weeks before the patient’s death, and patient hospitalisation in the final week (Table 5).

In the interviews, some family carers said that the burden was one of the reasons for hospitalisation. Although the physical burden was reduced for many family carers due to the patient receiving 24-hour professional care in the hospital, sometimes they continued to care for the patient. In addition, hospitalisation could also give rise to other burdens, for example feeling responsible for checking the professional care such as the provision of medication or dealing with inattentive professionals (Table 1, quotes 8, 9). The shift from one type of burden to another type was also mentioned when more care was arranged at home. Other family carers, community nurses and night-time care could often relieve the family carers’ physical burden. But sometimes this help was perceived more as an extra emotional burden than as relief (Table 1, quote 10).

In this study we looked at the unique combination of family carers’ and GPs’ perspectives on family carers’ degree, type and change of burden in the last three months of the patient’s life and whether this is associated with hospitalisation. The proportion of family carers experiencing a fairly heavy to severe burden increased from one third during the second and third months before death to two thirds in the final week. Most carers felt an emotional burden and a smaller proportion experienced a physical burden. Three-quarters of carers did not perceive their burden as a problem. The interviews showed that this was explained by the fact that caring for and supporting their relative often felt rewarding and it was the final thing they could do for their loved one. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also there was no significant evidence that patients of family carers of whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.

A strength of this study is the new insights provided in how the burden for family carers changes as patients come closer to death, from the perspective of both carers and GPs, and the association with hospitalisation. The generalisability of the findings may be limited because of the low response rate of GPs and carers. The reason for the low GP response rate may be the complex procedure of asking the GPs to invite carers to participate in the research. However there is little difference between the mean age and gender breakdown in our GP sample and the general population of Dutch GPs, for whom the mean age is 48 and where 59% are male [26]. Half of the GPs did not invite the carers to participate in the study; 31% of these GPs did not do so because they thought it would be too burdensome for the carers. Because of this, there may be an underestimation of the family carer burden. A further limitation is the retrospective design of the study. In assessing the burden of family carers, recall bias cannot be excluded from both the family carer him/herself as from the GP. However, because both GPs and carers filled in the questionnaire retrospectively, we don’t know in which direction this might have affected the outcome. Our results should be interpreted with caution because no validated questionnaire is used. However, our one item question about degree of burden is comparable with the one item overall question about burden in the ‘Zarit Burden Interview’ which was tested as a useful screening instrument [7].

Many family carers perceived the burden not to be a problem. Many carers said in the interviews that caring felt rewarding and important to do because it was the final thing they could do for their loved one. These positive feelings of reward and the perceived value of the care they provide help carers to cope with the situation were confirmed in in-depth studies with a cross sectional design [4, 8, 27]. The importance of coping with the situation may explain why many carers did not feel their burden to be heavy even when they spent a great deal of effort on caring for their relative in objective terms. In addition to this, our research shows that although a proportion of 66% family carers experienced a fairly heavy to severe burden in the last week of life, only a proportion of 25% perceive burden as a problem. Therefore it is recommended to GPs not only asking about the degree of burden, but also to ask whether the burden is perceived as a problem for the family caregiver.

An important result of this study is that GPs tended to assess the burden to be higher than family carers did in their self-assessment. In more than one third of the cases, the GPs estimated the burden to be higher, although in more than one fifth of the cases they estimated the burden to be lower. Given the above-mentioned results that carers do not always perceive their burden to be as high as one would expect on the basis of care activities, it is debatable whether these higher GP estimations are an overestimate rather than the lower family carer assessment being an underestimate. Overestimation by GPs might be a problem if GPs’ assessment of family burden is a reason for hospitalisation. However, in this study no evidence was found that the likelihood of hospitalisation was higher for patients for whom the GP had assessed fairly heavy or severe family caregiver burden. However, in some interviews it was explained that hospitalisation was chosen as a solution to give respite to the carers, especially for those who had cared for a long time. But then other kinds of burden could arise.