Caregivers’ End-of-Life Care Goals for Persons with Severe Dementia Change Over Time

INTRODUCTION

Dementia is a major cause of death worldwide [1]. It is estimated that there were 1.62 million deaths due to dementia globally in 2019 [2]. To provide patient-centered care, it is recommended that end-of-life (EOL) care should be aligned with patients’ wishes [3]. However, this is difficult to achieve in the context of dementia as persons with severe dementia (PWSDs) are unable to make or verbalize their own EOL care decisions [4–6]. Their EOL care decisions are thus made by their family caregivers, who may be unaware of PWSDs’ EOL care goals for themselves [7, 8]. It is thus relevant to understand caregivers’ EOL care goals for PWSDs and the factors associated with these goals.

Our previous work with patients with advanced cancer and heart failure has shown that patients’ goals and preferences for EOL care change over time based on what they are experiencing at that point in time, e.g., their quality of life, mood, and current understanding of prognosis [9–11]. If caregivers’ EOL care goals too change over time, then it suggests that these goals may not be well-formulated, potentially leading to decisional regret [6, 7], depression, and anxiety [6, 13] among caregivers after the EOL decisions are made. However, there is a dearth of literature assessing caregivers’ EOL care goals [14] as well as change in their EOL care goals [15].

Therefore, in this study, we first aimed to assess caregivers’ EOL care goals for PWSDs and the factors associated with these goals. As health care cost is a major concern for seriously ill patients in many countries [16], we assessed the trade-off between caregiver’s goals for life-extending treatments versus healthcare cost for these treatments. Our measure captures caregivers’ goal of extending PWSDs’ life even if it comes at a high cost.

Second, we aimed to assess the extent to which caregivers’ EOL care goals for PWSDs change over time. Based on previous literature among PWSDs, other seriously ill patients, older adults and their caregivers, we hypothesized that caregivers who had participated in an advance care planning (ACP) discussion [17, 18], with greater financial burden [19, 20], whose PWSDs’ quality of life was poorer [21, 22], who spent more time in caregiving [23, 24] and adult child caregivers [25] will be less likely to want maximal life extension for PWSDs. On the other hand, caregivers who are more satisfied with PWSDs’ quality of care [26], experiencing anticipatory grief [27, 28] and those who believe PWSDs have a better prognosis [10, 30] will be more likely to want maximal life extension for PWSDs. We also hypothesized that the change in time-varying factors, including change in PWSDs’ quality of life, caregiver financial burden, caregiver satisfaction with PWSDs’ quality of care and caregiver anticipatory grief will be associated with a change in caregivers’ EOL care goal for PWSDs.

METHODS

RESULTS

At baseline, we surveyed 215 caregivers of PWSDs. Their median age was 58 years [IQR: 52–63] and were mostly females (69%), Chinese (79%), and spouse (13%)/child (75%) (Table 1). Out of these, 181, 149, 143, and 124 caregivers answered follow-up surveys at 4, 8, 12 and 16 months respectively (Supplementary Figure 1). Of the 215 caregivers, 191 (89%) answered at least two surveys.

At baseline, moderate life extension was the most preferred option among caregivers (40%), and maximal life extension was the least preferred option (20%). The proportion of caregivers opting for maximal life extension reduced with time (Supplementary Figure 2). By one year, 51.6% of the caregivers had changed their EOL care goal at least one time since baseline and by 16 months (end of study duration), 58.6% of the caregivers had changed their EOL care goal at least one time since baseline (Supplementary Table 2). Of the latter, 31.9% changed their EOL care goal once, 15.2% twice, 9.4% thrice and 2.1% four times. At each time point, around 29 to 36% changed their EOL care goal from the previous time point (Fig. 1).

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Fig. 1

Proportion of caregivers who changed end-of-life care goal for persons with severe dementia from previous time point. ^*n is the number of people who answered survey n and n-1 (Supplementary Table 1/column 2).

DISCUSSION

The study results highlighted the variation in caregivers’ EOL care goals for PWSDs and that 59% of the caregivers changed their EOL care goal over time during a study duration of 16 months. Results suggest that most caregivers’ EOL care goals for PWSDs may not be well-formulated, and may vary with their experiences with PWSDs’ illness and their reaction to it at that point in time. This has implications for caregivers’ EOL decision making for PWSDs.

Our results showed that several factors are associated with caregivers’ EOL care goals for PWSDs. Caregivers of PWSDs with lower quality of life, caregivers whose expected life expectancy of PWSDs was lower and caregivers who had an ACP discussion favoured minimal life extension for PWSD. Previous studies among other caregivers of PWSDs and of patients with other illnesses have also shown that caregivers and physicians who perceive patients’ quality of life and prognosis to be poor were less likely to prefer aggressive life extending treatments for patients [21, 45]. Caregivers may feel that life-extending treatments may reduce PWSDs’ quality of life even further, enhancing their suffering. Past evidence also suggests that optimism about patient’s prognosis is associated with greater preference for life extension [10, 30] and that caregivers who participate in ACP and EOL discussions have a more accurate understanding of patient’s prognosis and preferences [17, 18]. Despite the plausible benefits of these discussions, caregivers’ participation in ACP remains low with only 15% of caregivers in our sample having participated in ACP.

Caregivers who were satisfied with care received were more likely to favour maximal life extension for the PWSD. Past evidence shows that EOL care goals are associated with both good and bad care experiences, and satisfaction with care [26]. Similarly, caregivers who experienced higher anticipatory grief were more likely to favour maximal life extension for the PWSD. As caregivers’ intensity of grief increases, caregivers threatened with the impending loss of PWSDs may intensify their attachment behaviours [27, 28], and thus be more willing to use life extending treatments for PWSDs. Our previous work has also shown that many caregivers prefer to use life extending treatments due to fear of losing the PWSD [46].

During the study duration of 16 months, about 59% of the caregivers changed their EOL care goal for the PWSD at least once since baseline. This is consistent with our previous work reporting that patients’ preferences change over time and that these preferences vary with patients’ experiences, e.g., quality of life and mood at that point in time [9–11]. The current study highlights, that caregivers too experience the same phenomenon, and that change in caregivers’ EOL goals is associated with change in PWSDs’ quality of life and change in their own anticipatory grief.

Our results have clinical implications. In the context of severe dementia, the burden of making decisions for PWSDs falls on their family caregiver. However, this has been shown to be an emotionally challenging task [6], made even more burdensome due to caregivers not being aware of PWSDs’ own preferences and goals for themselves. As a result, caregivers’ decisions for PWSDs are guided by their own goals [47], often resulting in aggressive EOL treatments for PWSDs [4, 48] and decisional regret [6, 7], depression and anxiety [6, 13] among caregivers. Our findings can guide health care providers during ACP and EOL discussions in helping caregivers make informed decisions for PWSDs.

First, as caregivers’ EOL goals change over time, ACP discussions should be a continuous process rather than a one-time intervention. Second, we found that caregivers’ goals for PWSDs and change in these goals are associated with PWSDs’ quality of life as well as their own emotions at that point in time (e.g., anticipatory grief). Evidence show that many patients also want their caregivers to adjust their care goals for them based on changing circumstances [49]. However, when caregivers experience heightened emotions, this can impede their rational decision making. Thus, health care providers should first support the caregivers by helping them cope and come to terms with the impending loss of their loved one. Effectively managing these emotions can make it easier for health care providers to engage in EOL discussions with caregivers. Lastly, about 25% of caregivers in our sample, expected the PWSD to live more than 5 years. Studies show that median survival after a diagnosis of dementia is 3.7 years, though it varies by sex and age at diagnosis [50]. Similar optimism in predicting patients’ life expectancy has previously been reported among caregivers, physicians, and patients themselves [51–53]. Our results show that, caregivers whose expected life expectancy for the PWSD is lower have a lower preference for life extension. This highlights the importance of discussing prognosis so that caregivers can have a more realistic understanding of PWSDs’ life-expectancy, and thus make more informed decisions.

The main strength of our study is our longitudinal dataset enabling us to capture caregivers’ EOL goals for PWSDs every four months over a period of 16 months. We used validated scales to measure variables such as quality of life, anticipatory grief, and satisfaction with care. Our study also has limitations. First, there was attrition in our sample over time due to death of PWSDs and loss to follow up of their caregivers. Second, the question assessing caregivers’ EOL care goal for PWSD may not exactly mirror the conversations between caregivers and health care providers, and thus the generalizability of our study results to these conversations needs to be explored. Third, caregiving duration may be an important factor affecting caregivers’ EOL care goals for PWSDs but we did not have access to this data. Lastly, our results may not generalize to settings where treatment costs are not a major concern.

In conclusion, our results showed that caregivers’ EOL goals for PWSDs changed over time with change in PWSDs’ quality of life and caregivers’ own anticipatory grief, expected life expectancy of PWSD and satisfaction with PWSDs’ care. Our findings suggest that ACP and EOL discussions with caregivers should be a continuous process rather than a one-time intervention, and that managing caregivers’ emotions and optimism regarding PWSDs’ prognosis, can enable health care providers to help caregivers make more informed decisions for PWSDs.