Death Preparation and Quality of Life amongst Family Caregivers of Terminal Cancer Patients: A Multicentre Cross-sectional Study

INTRODUCTION

Caring for ill cancer patients imposes a considerable burden on families, significantly reducing quality of life (QoL).^[1-3] Based on the close linkage of family QoL with caregiving activities and patient QoL,^[4,5] the importance of QoL, not only for patients but also for their families, has been highlighted as a goal of palliative care in clinical guidelines.^[6] The QoL of family caregivers (FCs) varies according to the disease trajectory;^[7] However, overall, palliative care rather than curative settings affects QoL more.^[8] In hospice settings, several factors have been identified as associated with FC QoL, such as caregiving burden, economic burden and caregiver mental health.^[8,9]

Preparedness for death is defined as caregivers’ perception of their readiness for a patient’s death.^[10] It involves how accurately a caregiver knows the patient’s prognosis and how he/she prepares emotionally for the patient’s death. Preparedness can be assessed in terms of emotional and practical aspects,^[11] which indicates that readiness for a patient’s death consists of emotions related to the death itself and challenges in daily living, such as new household responsibilities and funeral arrangements. The preparation stage has been reportedly associated with caregivers’ coping strategies, perception of financial adequacy, bereavement response and mental health, such as depression and anxiety.^[10] Thus, a lack of preparedness for death can be linked to poor FC QoL, as unprepared FCs might experience a higher care burden and more emotional distress than well-prepared FCs. Although several studies have reported associations between FC preparedness and caregiving outcomes, such as bereavement response or emotional distress, studies regarding the association of preparedness with caregivers’ QoL are relatively scarce.^[12] In a Swedish study of widowers, a low degree of preparedness increased the risk of low or moderate QoL 4–5 years after the loss (relative risk, 1.18; 95% confidence interval [CI], 1.3– 2.6).^[13] However, to our knowledge, no study has examined preparedness for death and QoL amongst FCs of patients with cancer in Korea. As end-of-life care should be considered under diverse sociocultural circumstances,^[14] tailored research on different cultures or countries is needed. Therefore, we aimed to assess the preparedness state of FCs of patients with terminal cancer and examine the association between FC preparedness and their QoL.

MATERIALS AND METHODS

RESULTS

FC’s QoL by preparedness level

Figure 1 presents the estimated total CQOLC-K scores and each subdomain according to the preparedness level. The preparedness level was categorised as low or high based on the median preparedness score. There were no significant differences in the CQOLC-K scores according to emotional preparedness level, except for the burdensome subdomain (12.3 vs. 18.5; P < 0.001). However, the CQOLC-K scores were significantly higher in the high practical preparedness group than in the low practical preparedness group in the total (62.0 vs. 73.4; P = 0.001) and burdensome subdomain (12.3 vs. 18.3; P < 0.001), but no differences were observed in the scores for the other three subdomains.

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Figure 1:

(a) Emotional preparedness. (b) Practical preparedness. Estimated QoL scores in total and subdomains by preparedness level. Adjusted for all variables in Table 1; By median value of preparedness. **P < 0.01 and ***P < 0.001.

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DISCUSSION

In this study, practically well-prepared FCs showed higher QoL than poorly prepared FCs, which remained significant in groups with poor psychosocial states. Previous studies have reported several contributing factors associated with FC QoL;^[16,20,21] however, studies on preparedness as a factor in FC QoL are relatively rare. A few previous studies have investigated the association between preparedness and FC’s QoL,^[22,23] but they were conducted in Taiwan with different measures for preparedness than ours. To the best of our knowledge, this is the first study to evaluate the association between preparedness level and QoL in the FCs of patients with terminal cancer in South Korea. We comprehensively evaluated caregiver and caregiving attributes associated with FC’s QoL, such as religion, family function, social support and resilience and ultimately investigated emotional and practical preparedness as aspects of FC’s QoL.

Preparing for a family member’s death is considered an important component of end-of-life care, not only for family members but also for patients and healthcare providers. Amongst the 26 attributes rated as important at the end of life, four items related to a patient’s death were identified.^[24] Regular and transparent communication among patients, family members and healthcare providers enables families to better prepare for death.^[25] However, despite the fact that communication with health-care providers about death and dying is one of the most crucial aspects of end-of-life care,^[26] the lack of discussion of the patient’s approaching death frequently frustrates family members.^[27] In particular, truth-telling has been uncommon in East Asian countries, including Korea, because of traditional Confucianism, which emphasises social ethics rather than spiritual issues and regards death as a taboo. Even unawareness of death has been considered a good death in Korea.^[28] The association between preparedness and FC’s QoL observed in our study implies that end-of-life discussions, which contribute to FC’s preparedness for death, can improve FC’s QoL.

The level of preparedness observed in our study was relatively low compared with that in previous studies. In an American study using the same method as ours,^[10] the mean scores of emotional and practical preparedness were 3.42 ± 1.5 and 3.67 ± 1.5, respectively. These scores are comparable to those of our high-QoL group (3.4 ± 0.9 for emotional preparedness and 3.6 ± 0.7 for practical preparedness). Since preparedness is linked to cultural beliefs and pre-loss caregiver attributes such as depression, anxiety or financial status,^[10] cultural differences and unmeasured caregiver attributes may affect the differences in preparedness levels. In addition, according to a cross-cultural study conducted amongst palliative care physicians in East Asian countries,^[29] 59% of Korean FCs are reluctant to engage in end-of-life discussions with physicians. We believe that the reluctance to engage in end-of-life conversations originating from death as a taboo is one of the most plausible reasons for low preparedness in Korea.

In our study, the FC’s overall QoL was significantly related to practical preparedness, not to emotional preparedness, which was consistent with a previous finding.^[23] Practical adaptation to the loss could be as vital as an emotional one, according to the ‘dual process model’ proposed by Stroebe and Schut.^[30] During the pre-loss phase as well, to some FCs, practical uncertainty could be more distressing than the psychosocial aspects.^[31] In addition, significant differences were observed only in the burdensome domain, but the explanation for these remains unclear. Further studies are needed to elucidate the mechanisms by which different QoL domains are associated with preparedness.

Our subgroup analyses revealed that the association between practical preparedness and QoL was prominent in FCs with lower education, low resilience, low social support and dysfunctional families. This suggests that the relative contribution of practical preparedness to QoL is greater in the psychosocially poor group. These results increase the robustness of understanding of the intricacy of the process of preparing for death and the importance of preparedness assessment according to FC’s attributes and caregiving environment.

Caregiver preparedness for death can be assessed using a multidimensional approach. Carr suggested that preparedness can be approached as emotional and practical dimensions,^[11] which we used to assess preparedness for death in this study. Previous studies have assessed emotional and practical preparedness with each single question, ‘How prepared do you think you are for the death of the patient emotionally (or practically)’?^[10] Other research groups have suggested the multidimensional nature of preparedness as medical, psychosocial, spiritual and practical dimensions^[32] or as cognitive, affective and behavioural aspects.^[31] In a recent study,^[33] researchers suggested a preliminary framework for FC preparedness based on establishing both present and future certainties. However, a consensus regarding the best preparedness assessment has not been reached.^[33]

In the current study, besides practical preparedness for death, other factors associated with FCs’ QoL were identified (i.e., FC’s age and objective care burden), which were consistent with previous results.^[34] Increased daily time spent on caregiving was a significant predictor of QoL,^[35] and caregiving duration also showed a significant impact on the QoL and supportive care needs.^[36] Caregivers who devote the majority of their time to the patient may struggle to find time for themselves, making it challenging to manage other obligations, including financial burden, which negatively affects their overall QoL.^[35] Therefore, it is important for family members to share and divide caregiving time, and further, supporting programmes or services are needed to lessen the time spent on patient care.

This study had several limitations. First, we could not establish a causal relationship between preparedness level and QoL because of the cross-sectional study design. In addition, preparedness can change and vary at different caregiving points.^[31] Longitudinal and interventional studies are required to confirm the relationship between preparedness and QoL. Second, since preparedness can be affected by various factors such as caregivers’ emotional symptoms, daily living competencies or financial status,^[10] these unmeasured covariates might have influenced the results. Third, the results observed in this study cannot be generalised to other populations because it was conducted with Korean FCs of patients with terminal cancer in inpatient palliative care units. Finally, the validity of the Korean version of death preparedness was not formally tested. To address this, we conducted a brief translating process: Two bilingual doctors first translated the questionnaire and reached a consensus and then a pilot test was performed with 13 samples (i.e., doctor, nurse, social worker, patient and caregiver), who provided feedback.

CONCLUSION

Amongst Korean FCs of patients with terminal cancer, QoL was significantly linked to practical preparedness for death, not to emotional preparedness. Our findings warrant the personalised assessment to evaluate each FC’s needs and preparedness levels. Moreover, to enhance FCs’ QoL during the end of life, specific palliative care services to help FCs prepare the death practically are needed through developing programmes and intervention studies.