Do advanced cancer patients and their caregivers agree on preferred place of patient’s death?—a prospective cohort study of patient-caregiver dyads

Introduction

Where would you prefer to die—at home, in a hospital, in a hospice or elsewhere? It is an important preference that may be disregarded and unaddressed in the face of impending death. Globally, home death is preferred by many terminally ill cancer patients, motivated by presence of family and loved ones, and also a sense of normalcy (1-4). As a result, home deaths are regarded as a “gold standard” and a quality marker for end-of-life (EOL) care in many countries (5,6). However, a home death can be difficult to achieve, especially for patients who lack specialized home care and equipment (4,7). Uncertainties at EOL can also impose additional burden for family caregivers who enter their caregiving role underprepared for the challenges they may encounter (4,8,9). Even though caregiving for loved ones evokes values of filial piety, especially in many Asian cultures, it can inflict physical, financial and psychological burden on caregivers (8,10-12), and caregivers may prefer institutional death for patients to gain access to continuous professional help and symptomatic relief (13) even if their patient prefers to be at home.

Achieving patient-caregiver concordance can reduce distressing family conflicts and increase the likelihood of patients dying at their preferred place (14,15). Yet, few studies have investigated patient-caregiver concordance regarding preferred place of death (PPoD) (4,5,16-20). Patient characteristics, illness severity, effect of caregiving on family caregiver’s life and perception of caregiving burden have been reported to influence patient-caregiver concordance on PPoD (17,19,21-23). However, previous studies show that patients’ and caregivers’ preferences for EOL care change over time (21,23-25), as their illness progresses and caregiver burden evolves. Most studies assessing patient-caregiver concordance in preferences have, however, been cross-sectional (4,5,16-20,22,26,27); thus, it remains unclear on how changes in patients’ and caregivers’ preferences influence the concordance on their PPoD and if dyad concordance in PPoD could predict the actual place of death (PoD) (28-30).

Using data from a prospective cohort study, we first aimed to examine changes in patients’ and caregivers’ preference for home death and concordance in their preference for home death over the last 3 years of patients’ life. We hypothesized that majority of patient-caregiver dyads will be concordant in their preference for home death and this proportion will increase closer to patients’ death. Based on prior literature (17-19,21-23), we hypothesized that patient-caregiver concordance in preference for home death will be associated with patients’ symptom burden, history of hospitalization, financial difficulty; and caregivers’ competency, family support, psychological distress and spiritual wellbeing. Secondly, we aimed to examine whether concordance in preference for home death among patient-caregiver dyads was associated with their actual PoD. We hypothesized that patients will be more likely to die at home if the dyads are concordant in their preference for a home death. We present this article in accordance with the STROBE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-23-496/rc).

Methods

Design

We used data from Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS), a prospective cohort study of 600 patients with stage IV solid cancer (trial registration: NCT02850640) (31).

Sample and setting

Between July 2016 and March 2018, participants were recruited from outpatient medical oncology at two major public hospitals in Singapore. Eligible patients were aged ≥21 years, Singapore citizens or permanent residents, and cognitively able to consent, Eastern Cooperative Oncology Group (ECOG) status ≤2. Eligible caregivers were ≥21 years, providing or ensuring care, and legally acceptable representative of the patient (e.g., spouse/adult child). The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the SingHealth Centralized Institutional Review Board (2015/2781) and informed consent was obtained from all the participants.

Study variables

Patients and caregiver participants were administered a follow-up survey questionnaire every 3 months. The survey was administered either face-to-face or via telephone or via web survey link shared with the participants based on their individual preference. The survey questionnaire assessed a wide range of topics in their preferred language (English/Mandarin/Malay). The following measures were assessed:

Outcome

PoD

Patients’ preferences were assessed by asking “If you had a choice, where would you like to be during the last days of your life?” Similarly, caregivers’ preferences were assessed by asking “Where would you like (patient) to be during the last days of his/her life?” Responses were categorized as home and non-home death (institution (includes hospital, hospice, or nursing home) and unsure/others). We categorized hospital, hospice, and nursing homes together under institution because the proportion of participants preferring hospice and nursing homes was quite low to create a separate category. Concordance in patient-caregiver preference for home death was categorized as both patient and caregiver preferred a home death, neither preferred a home death, and only one of them preferred a home death. Actual PoD [home, or institution (hospital, hospice, nursing home, others)] was determined from medical records and caregivers’ reports.

Independent variables

Patients and caregiver characteristics

At baseline, patients and caregivers self-reported their sociodemographic (age, gender, relationship to patient/caregiver).

Financial difficulty

Financial difficulty was assessed by asking patients how well the amount of money they had enabled them to cover the cost of treatment, take care of their daily needs, and buy those little “extras” (32). A higher total score (range, 3–9) reflected higher financial difficulty.

Symptom burden

Patients reported severity of commonly reported symptoms (pain, shortness of breath, constipation, loss of weight, nausea, swelling, dryness of mouth and throat, fatigue, any other) on a Likert scale from 0 to 4 (not at all, a little bit, somewhat, quite a bit, very much). The list of symptoms was adapted from the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) and the total score from all items (range, 0–40) reflected the total symptom burden score (31,33).

Healthcare utilization

Patients’ number of inpatient admissions and length of hospital stay in the last 6 months of life were assessed using medical billing records.

Caregiver competency

Using the 4-item Caregiver Competence Scale validated for use among caregivers of palliative patients (34), caregivers’ rated each item on a Likert scale from 0 to 4 (not at all, a little bit, somewhat, quite a bit, very much). A higher total score (range, 0–12) indicated greater competence.

Psychological distress

Caregivers psychological suffering was assessed using the 14-item Hospital Anxiety and Depression Scale validated for use in cancer patients in Singapore. A higher total score (range, 0–42) represented greater psychological distress (31,35).

Lack of family support

Caregivers’ family support was assessed using a subscale of the modified Caregiver Reaction Assessment Scale (range, 1–5) validated for use in Singapore (31,36).

Spiritual outcomes

Caregivers’ spiritual wellbeing was assessed using a subscale of 12-item Functional Assessment of Cancer Therapy-Spiritual (37)—meaning and faith. It was rated on a Likert scale from 0 to 4 (not at all, a little bit, somewhat, quite a bit, very much). A higher total score (range, 0–42) represented better spiritual well-being.

Statistical analysis

We analysed data of patient-caregiver dyads who died between November 2016 and March 2022 and who had answered at least one survey during the last 3 years of (patients’) life. We described the baseline characteristics of patients and their caregivers and their PPoD (home and non-home death) was charted across time prior to death. This was repeated for patient-caregiver dyads who both preferred home death, did not prefer home death, and where either patient or caregiver preferred home death.

We conducted multivariable multinomial logistic regression models to assess association between preference for home death (both patient and caregiver preferred a home death, both did not prefer a home death, and either one of them preferred a home death) and the above listed independent variables. Mixed-effects regression models utilise all available data with repeated measurements overtime and uses maximum likelihood estimation to handle data missing at random (38). Lastly, we conducted a chi-square test to determine any association between actual PoD and PPoD assessed at the last survey closest to patient’s death.

Results

Out of the 1,042 eligible patients approached, 600 consented to records review and survey administration, and 311 had informal caregivers that consented to survey administration. Among the 311 patient-caregiver dyads, 82 patients were alive at the end of the study period and 2 patients did not answer the survey in the last 3 years of life, thus forming the analysis cohort of 227 dyads. Figure 1 illustrates the study recruitment process.

Figure 1 Patient-caregiver dyads recruitment flow.

The average number of times [mean (standard deviation)] study participants responded to their PPoD in the last 3 years was 2 (0.8) (range, 1–4). The average time to death per patient was 11.8 (6.8) months (range, 0.2–35.4 months) for survey responses included in the analysis.

Table 1 describes patient and caregiver baseline characteristics at the beginning of last 3 years before patient’s death. Average age of patients was 62.6 years, 51.1% were male while 48.9% were female. Most of the patients died at an institution (64.8%) followed by home (32.6%). Average age of caregivers was 49.8 years and 63.0% were female. Nearly half of the caregivers (48.9%) were spouses of the patients.

Dyads’ preference for PoD in the last 3 years of patients’ life

Overall, in the last 3 years of life, 67% of the patients and 75% of the caregivers preferred a home death for patients. Proportion of caregivers who preferred home death decreased in the last year of patients’ life (77.5% to 62.9%) while preference for non-home death increased (22.5% to 37.1%) (Figure 2).

Figure 2 Changes in patients and caregivers preferred place of death (for patient) (in the last 3 years of life).

Concordance in dyads preference for home death in the last 3 years of patients’ life

Overall, more than half of the total observations from patient-caregiver dyads (54%) in the last 3 years of patient’s life were concordant in their preferences for home death. Twelve percent of the total observations were concordant in not preferring home death and 34% were discordant with either patient or caregiver preferring home death. Concordance in preference for home death decreased closer to death (68.0% to 43.8%). Conversely, discordance in preference for home death (either patient or caregiver preferred home death) increased as death approached (20.0% to 41.6%) (Figure 3).

Figure 3 Concordance in patient-caregiver dyads preference for home death in the last 3 years of patients’ life. PT, patient; CG, caregiver.

Results from our multivariable logistic regression (Table 2) showed that dyads who preferred home death were less likely to involve older patients [relative risk ratio (RRR), 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing homes, unsure or others) were more likely to involve patients with greater symptom burden (RRR, 1.08; P=0.007) and spousal caregivers (RRR, 2.59; P=0.050) and less likely to involve caregivers with greater psychological distress (RRR, 0.90; P=0.003) and spiritual wellbeing (RRR, 0.92; P=0.007).

Contrary to hypothesis, we did not find any association between dyads’ concordance for a home death and patient’s financial difficulties, symptom burden, inpatient usage in the last 6 months of life and caregiver’s competency, psychosocial distress, perceived lack of family support and spiritual wellbeing (all P>0.05). Dyads’ concordance for a non-home death was not associated with patients’ age, financial difficulties, inpatient usage in the last 6 months of life; and caregiver self-perceived competency and lack of family support (all P>0.05).

Association between patient-caregiver dyads PPoD prior to death and patients’ actual PoD

Summary statistics (Table 3) showed that dyads who did not prefer a home death were the most likely group to have their preferences met (76.9%). Among dyads where both patients and caregivers preferred a home death at final survey assessment, 36.1% of patients died at home; where both patients and caregivers did not prefer a home death, 23.1% of patients died at home; where dyads were discordant in PPoD, 33.3% of patients died at home. Contrary to hypothesis, we did not find an association between actual PoD and patient-caregiver concordance in PPoD (P>0.05).

Discussion

This study used longitudinal data over last 3 years of patients’ life to assess changes in preference for home death among patients and caregivers, the extent of concordance between the dyads and investigated the patient and caregiver factors associated with dyad concordance over time. Lastly, we explored if concordance in dyads’ PPoD was associated with actual PoD.

We observed longitudinally that most patients and their caregivers preferred a home death, confirming previous cross-sectional studies (4,5,20,26,39). Dying at home is associated with physical and emotional comfort, and a safe place in contact with familiar people and environment (1-3). Cancer patients who die at home are also reported to have better quality of life at EOL than patients who die in hospitals (40).

We also showed that more than half of the total observations (54%) were concordant for home death. This is higher than Western literature where reportedly proportion of patients and caregivers preferring home death, ranges between 35% (21) and 32.6% (26). The differences may be attributed to the sociocultural context. In Asian societies under the influence of Confucian idea of filial piety, caregiving is seen as a repayment to parents or family members and caregivers may feel obliged to uphold the patients’ wishes (to die at home) (19,41). In Singapore, national healthcare policies are in place to encourage caring for family members in a home environment (30).

Our longitudinal analysis revealed and confirmed the dynamic nature of preferences for PoD (21,23-25). The proportion of caregivers who preferred a home death decreased as patients’ death approached, especially in the last year of life. This change may reflect the tumultuous challenges of the caregiving role. Despite emotional, physical and financial hardships, caregivers’ concerns for patients are likely to be more pragmatic, prioritizing quality of healthcare over their self-availability and ability to care for patients (8,42,43). In parallel, the extent of concordance for home death between patients and caregivers decreased as death approached, which is conflicting to the expectation that impending death fosters consensus (44).

What then influences patient-caregiver dyads’ concordance on preference for home death? We identified that dyads who preferred home death were less likely to involve older patients, consistent with previous studies (16,45). However, this is contrary to other Asian studies that suggest that death at home allows “fallen leaves to return to their roots” (18,41,46). The reasons for this contradiction require further exploration but it is possible that elderly patients may want to spare the family the burden of caring for them (22,47), or may feel relatively unsupported from the family, or there may have been a consensus decision that home cannot provide better care than institution.

On the other hand, dyads who did not prefer a home death were more likely to have patients with greater symptom burden. Severe symptoms may be difficult to control at home, requiring the need for more medical care (21) and thus discouraging dyads to be at home especially if they had already tried home care and suffered a negative experience (4,14).

Dyads who did not prefer home death were more likely to involve caregivers who were spouses. This was contrary to previous studies (16,19). Compared to non-spousal caregivers, spousal caregivers were more vulnerable to caregiving burden and depression as they need to simultaneously fulfil their supportive caregiving roles while facing ambiguity and potential loss of a partner (48-51).

However, concordant dyads who did not prefer home death (versus discordant dyads) involved caregivers with lower psychological distress and higher spiritual well-being. Association between caregiving and psychological distress has been widely established where caregivers caring for EOL patients are more likely to suffer from anxiety disorders and poorer mental health outcomes (48,52,53). Caregivers with lower distress may experience fewer conflicts with patients, better able to understand what patients prefer and thus have preferences concordant with those of their patients. On the other hand, higher spiritual well-being among caregivers can be a source of spiritual conflict with patients, which may negatively affect their relationship (51) and lead to discordance in preferences.

Does concordant dyads’ preference influence the actual PoD? Despite most of our dyads preferring a home death, we found that only 32.6% of patients ended up dying at home. We did not find any association between patient-caregiver concordance in PPoD and actual PoD. However, our results showed that among dyads that did not prefer to die at home, 77% of their patients actually died at an institution. This finding further emphasizes the need to identify factors that prevent the dyads who want a home death from achieving their desired PoD.

The main strength of the study is that findings are based on a prospective longitudinal design to capture the dynamic changes in PPoD in the setting of worsening illness and diminishing family resources as death approaches (4,5,16-20,22,26,27). However, there are few limitations, first, the associations observed could be biased by the self-reporting behaviours of patients and caregivers. Second, it is not possible to determine the causal inference due to non-experimental study-design. Third, PPoD for hospice and nursing homes could not be separated as their proportions were low in the dataset (for all available observations, patient’s preference for hospice—2.8% and nursing home—1.3% and caregiver’s preference for hospice—1.8% and nursing home—0.3%). Lastly, the findings are representative of the patients in specific geographic setting and may not be generalizable to all patients with advanced cancer. Future research should confirm the generalizability of our results in different clinical illnesses and cultural settings.

Despite these limitations, these results are informative. We longitudinally confirmed the discrepancy in PPoD between patients and their caregivers (18,20). While home death is regarded as a “gold standard” of EOL care, it is not possible for all deaths to be managed at home. It also reflects the challenges and practicality of balancing patients’ autonomy of choice and caregivers’ wellbeing. Our data suggest a greater need for effective interventions that not only revolve around understanding patients’ EOL needs and ensuring home-based symptom control but also a systematic approach to support caregivers and reduce their distress. Lastly, future research should seek to identify factors that prevent the dyads who want a home death from achieving their desired PoD.

Conclusions

In conclusion, this study shows that dyads concordance for preference for home death decreases closer to death. Given the association between dyad concordance for preference for home death and patient age, symptom burden and caregivers’ distress, efforts need to be made to understanding the needs of older patients and optimizing home-based symptom control as well as provide resources to better support caregivers. Lastly, future research should identify factors that prevent the dyads who want a home death from achieving their desired PoD.

Acknowledgments

We thank the COMPASS study group for their contributions. The findings from this study have been previously presented in the MASCC/JASCC/ISOO Annual Meeting 2023, on 17 June 2023 (https://doi.org/10.1007/s00520-023-07933-x).

Funding: This work was supported by funding from Singapore Millennium Foundation (2015-SMF-0003) and Lien Centre for Palliative Care (LCPC-IN14-0003). The funders did not have any role in interpretation of study results. The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the study.

Footnote

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-496/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-496/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-496/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-496/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the SingHealth Centralized Institutional Review Board (2015/2781) and the current study involves human subjects who provided their signed consent.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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