We used pooled data from two mortality follow-back surveys to examine the aggressiveness of EOL care received by 681 deceased cancer patients. We found statistically and clinically significant variations based on patients’ underlying cancer type and their contact with community health care services.
Supporting previously published studies, we found that patients with haematological cancers were more likely to experience aggressive EOL care compared to those with lung cancer [16, 34]. Features related to both the disease process and the discipline of haemato-oncology are likely to contribute to this effect, for example, chemotherapy remains the main and often only form of therapy available, clinical trial involvement is particularly high and haemato-oncology clinical services have historically remained distinct from those of solid tumours with less collaboration between disciplines, including with palliative care . Our finding that patients with prostate cancer also have an increased risk of experiencing aggressive EOL care is interesting, and additional research exploring patterns of acute care towards the EOL by cancer sub-groups is warranted. In our sample, although the proportion of prostate cancer patients who spent ≥30 days in hospital during the last 3 months of life was similar to patients with other cancer types, we found that prostate cancer patients were more likely to have greater than or equal to two ED visits in the last 3 months of life and/or die in hospital (Table 4 Appendix). Metastatic bone disease is commonly seen in patients with advanced prostate cancer, and complications from this pattern of disease spread, in particular pathological fractures, typically result in ED visits. This may explain some of the higher rates of ED use that we found in our sub-group of prostate cancer patients; however, further research exploring this finding is required. Our finding of lower odds of aggressive EOL care associated with GP home visits supports Almaawiy and colleagues . In their study of 9467 cancer decedents in Canada, increased family physician visits were associated with reduced odds for both hospital death and an ED visit in the last 2 weeks of life . However, Almaawiy et al. found that patients with greater than four visits per week had increased odds of hospitalisations and hospital death, the opposite of our study which found that care was less aggressive for patients who had greater than five GP home visits than for those who had one to five or no GP visits.
Our data support growing observational and experimental evidence that community palliative care is associated with lower odds of aggressive EOL care [9, 24, 36, 37]. Expansion of palliative care services may therefore be one approach towards helping address the current capacity crises faced by many acute health care systems. Of note, the effect size found in our study (AOR 0.27, 95 % CI 0.15–0.49) was greater than those previously reported which may be related to our study time period (the last 3 months of life) as this is longer than those reported by several similar studies [20, 37]. This is particularly relevant given the small but emerging body of evidence indicating a greater reduction in risk of patients receiving aggressive EOL care with earlier palliative care involvement [9, 37, 38]. Further investigation of the effect according to timing of palliative care interventions is necessary.
Several previously published studies have reported that men and patients of lower financial status have an increased risk of experiencing aggressive EOL care [15, 16, 20–22, 25, 26, 34]. In our study, although we found a similar pattern, our results for these factors did not reach statistical significance. This may be related to our study sample size which when compared to similar studies reporting significant findings is much smaller, with the later mostly analysing population-based routinely collected data. We also used a subjective measure of financial hardship which in health research in less common than objective socio-economic status measures . Subjective assessments of financial status are valid alternatives to objective measures and are particularly valuable when objective measures, which require responses to multiple questions and are prone to having high levels of missing data, are felt to be inappropriate [40, 41]. The lack of association found between patient age and aggressive EOL care is inconsistent with the wider scientific literature where a decrease in aggressiveness with increasing patient age has generally been reported [15, 17, 20, 42, 43]. This requires further investigation but may reflect a specific change in UK policy towards cancer treatment for older people, with equality legislation in 2012 .
We also found no association between aggressive EOL care and cancer patients’ health status (mobility, ability to self-care, activity level, pain/discomfort and anxiety/depression) 3 months prior to death, suggesting that socio-demographic and/or environmental factors may be of greater importance when determining the type of care that patients are likely to receive towards the EOL. In a systematic review of place of death by Gomes and Higginson in 2006, environmental factors were also found to be more influential than factors relating to the underlying illness . These findings have important policy implications when considering how future acute health care services are delivered, especially given the ageing population and anticipated rise in cancer cases .
Mortality follow-back surveys have recognised limitations primarily relating to the validity of bereaved caregivers’ responses as proxies for the decedents. For objective measures, caregiver responses have been shown to have moderate to good agreement with patients’; however, for subjective experiences, such as pain or anxiety, less overall agreement has been reported and it is therefore possible that the responses received in our study may not be truly representative of the patients’ experiences at that time [47, 48].
As is the case with all secondary analysis, our choice of variables was limited by the data collected for the purposes of the primary studies. For our dependent variable, this meant that two of the three EOL care indicators that we used to calculate our composite outcome measure have not themselves been validated (greater than or equal to two ED visits in the last 3 months of life and ≥30 days in hospital in the last 3 months). However, both indicators were considered to be clinically relevant and were based on well-established validated markers [5, 33]. The third indicator, death in hospital, is commonly used as a marker of potentially aggressive EOL care arising from consistent evidence that the majority of cancer patients would prefer to die at home . With regard to the independent variables investigated, we explored socio-demographic factors, clinical characteristics and patient receipt of GP home visits, district nursing and community palliative care. Further information regarding the local availability of health and social care services was not available. As our study included patients from across London, it is therefore possible that regional variations in care provision, for example, bed availability and/or community hospice services, may have influenced the parameters that we used to define our primary outcome of aggressive EOL care. Finally, because of the different sampling approaches used by each of the primary studies, the prevalence of aggressive EOL care in our pooled sample may not be representative of, and therefore generalisable to, the wider cancer population. However, these different sampling approaches were not expected to impact the factors associated with aggressive EOL care which was the primary focus of our study, and benefits to pooling the datasets included being able to explore the EOL care experiences of patients receiving a range of different health care packages including various levels of palliative care input. Furthermore, the QUALYCARE study sampled participants according to place of death, with deaths in hospital undersampled. It is therefore likely that our estimation of aggressive EOL care, which included death in hospital as one of its indicators, is actually lower than that of the true population.