Many patients experience physical symptoms from cancer, such as pain, shortness of breath, and constipation, and these change across the disease trajectory. Managing symptoms is especially important at the end of life, because these symptoms often worsen and are poorly managed [1
]. Standardized symptom assessment is increasingly being used to systematically identify symptom issues [4
]. Prior research in cancer outpatients has shown that a third of cancer patients report moderate–severe scores for several common cancer symptoms in the last month of life [6
]. However, this symptom research using standardized assessments are mainly available only in outpatient clinic settings. Thus, symptom data on cancer patients while they are being cared for at home is a major research gap. This gap is especially critical when addressing near end of life, because this is when many patients are too sick to attend outpatient clinics and care is at risk of being fragmented and uncoordinated.
To address this gap, we researched a population-based cohort of cancer decedents in Ontario, Canada, because it has universal health care coverage that includes publicly funded home care services. Prior research shows that nearly 70% of cancer patients in Ontario, Canada, used home care services in the last year of life [7
]. We also have comprehensive symptom data on these patients because all home care recipients complete a comprehensive standardized assessment, called the Resident Assessment Instrument for Home Care (RAI-HC) in Canada [8
], also known as the Minimum Data Set used in nursing homes in the USA [9
]. The RAI-HC includes dozens of items capturing physical symptom domains and, thus, it can uniquely address prior noted limitations in cancer symptom research at end of life [10
]. For instance, the presence of high pain at end of life has been reported, but it is not known whether the pain was then effectively managed [6
]. Other important physical symptoms unique to end-of-life care, such as delirium and ulcers, are often not measured but are captured on the RAI-HC [12
Our study’s objective was to describe the trajectory of common physical symptoms, such as pain and shortness of breath, among cancer home care patients. Specifically, we focused on the last six months before death among a cohort of cancer patients receiving home care services. This knowledge is important because more end-of-life care is being shifted away from hospitals to the home and community. Thus, understanding the changing symptom needs of cancer patients in the home will enable improvements in quality of end-of-life care and patient outcomes.
This population-based study examined the trajectory of average symptom scores in the last six months of life of cancer patients who were living at home and receiving home care services. The study is unique as it included over 30,000 in-depth home care assessments, allowing us to report five measures for pain and eight other physical symptoms. Like other research, the prevalence of all symptoms increased as one approached death, particularly in the last month of life.
Our results reveal several novel findings about cancer symptoms at end of life. For instance, prior research in cancer patients visiting ambulatory outpatient cancer clinics identified high prevalence of cancer pain at end of life, from 35% of the population reporting moderate–severe pain six months before death to 40% in the weeks before death [6
]. In our home care population, the prevalence of moderate–severe pain was higher throughout, peaking at 70% in the week before death. However, our study has unique data that shows that the proportion who reported having “moderate–severe pain that is not controlled” or “inadequate pain control” was significantly lower, peaking at 22% in the week before death. Notably, those who reported “excruciating pain that is not controlled” was even lower. This suggests that pain is actually managed well in the home care environment and asking about one’s pain frequency or intensity alone at end of life is insufficient to completely understand the person’s overall pain experience.
In contrast, other physical symptoms, such as loss of appetite, self-reported poor health, shortness of breath, and a history of falls, started at a prevalence of a third of the cohort, and increased steadily until death. To improve care quality, home care providers could use these symptoms as potential harbingers of death and could initiate palliative care earlier in the disease trajectory. For instance, high health instability has been used as a major predictor of mortality and markedly increases in the last two months of life, reaching a peak of identifying 50% of the cohort in the week before death. Initiating palliative care services earlier to manage complex symptoms might help to reduce the prevalence of these symptoms and improve patient quality of life. Moreover, addressing a prior research gap [12
], this research reports on delirium among those in the community, which was steady at below 5% until the final month of life and peaked at 18% in the week before death. Note that these rates may be underestimated, since those who have delirium and those who are more symptomatic might be admitted to hospital as they are sicker and may not have a repeat RAI-HC assessment conducted.
This study was limited to those who received publicly funded home care services in their final six months of life. We were not able to differentiate between cancer types, as this was not reported in the RAI-HC. Another limitation was that another RAI tool, the RAI Palliative Care tool, was also in existence during our study period and was not able to be linked to our dataset. However, the RAI Palliative Care tool had variable adoption and was used mainly for those who were clearly at end of life, which was often weeks before death. Therefore, our proportions may underreport the true prevalence of cancer symptoms in the final month of life. For instance, one study shows that shortness of breath among those using the RAI Palliative Care tool was 45% at first assessment [23
], whereas we report 39% three months before death. However, a strength is that the RAI-HC is widely used in many countries such as in the US, Japan, and countries in the European Union; therefore, these results can be compared directly to other jurisdictions.
In conclusion, this study described the trajectory of physical symptoms in a large population-based sample of cancer patients at end of life. Though the presence of high pain was commonly reported, it was also mostly controlled. While high health instability was a predictor of death, it was only evident in half of the cohort being assessed one week before death. Loss of appetite, self-reported poor health, a recent fall, and shortness of breath were also very common in the weeks before death and could be explored further as triggers for end-of-life care planning. Because at end of life, many cancer patients are too ill to receive treatment in a cancer center, initiating palliative home care services earlier to manage these complex symptoms is vital to improving quality of life and reducing symptom burden for cancer patients at end of life.