Marital status and family caregiver age predicted inpatient hospice as the final place of care while gender determined end-of-life care in the hospital. Functional status, pain score and patient’s place of death preference were associated with both inpatient hospice and hospital as the final place of care. Goal-concordance with patients’ preferences was fair to moderate while patients and families’ wishes were moderately congruent. However, unlike other studies, socioeconomic status(10, 42) was not independently predictive of the final place of care. In Singapore’s healthcare financing system, home-based palliative care and inpatient services are heavily subsidized. Hence, coupled with the national healthcare insurance and savings scheme, the amount of out-of-pocket payment(43) among the different settings might not vary substantially. Acute healthcare utilization(13, 32, 44) was also not an independent predictor, possibly due to the home-based team’s regular contact and prompt response to patients’ needs throughout the illness trajectory.(26)
In the Asian context, children and spouses are bound by values and societal norms to care for their immediate relatives when they are ill.(13) Marital status predicted inpatient hospice as the final place of care likely because single or divorced patients lacked the social support accorded through marriage(8) compared to married or widowed patients. Other studies found living arrangement to be predictive of the place of death(8, 11, 13, 24) but not this study, possibly because marital status could be a more direct indicator of patients’ level of social support instead. Additionally, many families depend on paid help to provide direct hands-on care,(13) hence differences in place of residence may not be an issue in a small and well-connected nation like Singapore. Due to the vital role that family caregivers play, their age determined inpatient hospice as the final place of care. Family caregivers supplemented the professional care provided by the home-based team and informal care provided by paid help.(45) For older caregivers, caring for functionally dependent patients with cancer for a long duration can be particularly demanding physically and psychologically.(22) Their ability to sustain and provide care at home safely may be compromised, necessitating inpatient hospice admission for terminal care.(45) Consistent with other studies’ findings,(13, 44) male patients were more likely to be hospitalized for terminal care due to their higher inclination for aggressive treatment in the hospital at the end-of-life.(46)
Patients with higher functional status were more likely to be in inpatient hospice or hospital as the final place of care compared to bed-bound and fully assisted patients, echoing findings from systematic reviews.(8, 11) Functionally better and more alert patients may hope to maintain their status through hospital interventions,(4) while patients with PPSv2 scores between 40% and 60% and who are not as drowsy may require a level of supervision and physical assistance beyond caregivers’ coping capacity, predisposing them to inpatient hospice for terminal care. Qualitative analysis of the reasons for admission may provide more insight into this finding. Given their better function, a hospice day care may be incorporated into the integrated model to supplement care for patients who prefer to remain at home. Pain severity also determined inpatient hospice and hospital as the final place of care. Complex pain and its associated psychological implications could overwhelm caregivers, affecting care quality.(11, 14, 16–19) To ensure comfort at the end-of-life, patients and families may prefer an institutional setting where professional care and intervention are readily available.(45)
Patients’ preference for non-home death was the strongest determinant of inpatient hospice and hospital as the final place of care, consistent with findings from other studies.(8, 10, 11, 24, 44) The home-based team initiated care planning discussions early with patients and families and revised them as circumstances changed along the illness trajectory. These discussions were documented in the electronic medical records so that all healthcare professionals involved were aware and could work collaboratively to support patients and families at their preferred location as much as possible.(26) This was reflected in the moderate congruence between patients and families’ preferences and the substantial level of goal-concordance with families’ preferences. However, it stood in contrast to the suboptimal level of goal-concordance with patients’ preferences and has implications for policy and practice.
Implications of findings
Although close to 60% of our patients died at home which is above the national average of 28%,(44) the suboptimal level of concordance with patients’ preferences revealed gaps within the integrated model that required addressing at the macro, meso and micro level.(25) More comprehensive social networks in the community could be established to support single or divorced patients who wish to remain at home.(44, 47) The influence of family-related factors on patients’ final place of care and the disparity in goal-concordance between patients and families’ preferences highlighted the instrumental role families play in the end-of-life care of advanced cancer patients. Hence, more practical and emotional support could be provided to better equip families for the care and death of patients who prefer to be at home,(4, 13, 21, 29) mitigating potential psychosocial sequelae. Patients whose final place of care were in institutions had lower mood and well-being while more of their families required professional bereavement support. As home was not the preferred place of care and death for a substantial minority of patients (~ 20%), the integrated model could also be enhanced with more funding and capacity given the vital role it plays in catering to the diverse preferences and needs of patients and families.(24, 26)
Although pain was not the most severe symptom, a score of 2 was sufficient to predict institutionalization. In order for patients to remain comfortably at home for terminal care according to their preference, analgesia can be pre-emptively prescribed to optimize pain control after due deliberation has been given regarding the propensity for misuse.(48) Caregivers should also be adequately trained regarding its complex administration. Additionally, being cognizant of the determinants of the final place of care allows care planning discussions to be personalized, improving communication and care satisfaction when preferences are met.(11, 32, 49) Realistic goals can be set and transitions between care settings can be arranged in a timely manner to prevent traumatic changes at the end-of-life, minimizing the risk of complicated grief.(4, 50) The high rates of care plans discussed with patients (~ 70%) and families (~ 90%) suggests that these important conversations were taking place in practice and efforts should continue to initiate them early.(3, 4) When faced with non-modifiable factors, the wishes of functionally better male patients for hospital interventions should be respected, although the short hospitalization stay is sobering.
Strengths and limitations
This is one of the few studies examining factors associated with home, inpatient hospice and hospital as the final place of care among advanced cancer patients receiving home-based palliative care within an integrated model. As care planning is dynamic, the last discussion prior to death was obtained to capture the eventual wishes of patients. Symptoms and functional status assessed within two weeks before death or admission to the final place of care were also collected instead of on enrolment to reflect patients’ condition at the end-of-life, overcoming the limitations of previous studies.(10, 24)
However, this study has its own limitations. Causal links could not be established from associations identified and coding independent variables as binary indicators could result in a loss of power. Intensity of home-based palliative care service was associated with the place of death in some studies(8, 13, 24) but it was not evaluated in this study. Not all patients discussed their care preferences, hence the goal-concordance and congruence outcomes should be interpreted with this in mind. Due to the retrospective study design, inferences made about preferences could not be confirmed but the documentation of all healthcare professionals involved were reviewed for corroboration. Even though the findings may be limited in its transferability to societies with vastly different cultural norms, values and healthcare systems, it may potentially still be generalizable to similar patient population and setting. Due to different care needs and disease trajectories,(51) findings from advanced cancer patients in this study cannot be extrapolated to non-cancer. Hence, future research in non-cancer patients is required so that end-of-life care can be tailored to meet the needs and preferences of specific patient populations.