Background
Cancer is the second leading cause of death globally, accounted for 8.8 million deaths in 2015 or nearly 1 in 6 of all global deaths [
1]. Adjusting for country-specific changes in population growth and population ageing, GLOBOCAN estimated that global cancer deaths would rise 72% from 7.6 million in 2008 to 13.2 million deaths by 2030 [
2]. Cancer is the leading cause of death in China, with the mortality rate for urban residents 164.35/100 thousand and 154.98/100 thousand for rural residents [
3]. Population aging and growth saw the number of cancer deaths increase by 73.8% during ten years from 2000 to 2011 [
4].
Cancer imposes a substantial economic burden on cancer suffers, their families and the health system. The global annual costs of cancer were estimated to be US$1.16 trillion in 2010 [
1]. In the United States, direct medical costs for cancer care was US$77.4 billion in 2008 [
5], increasing to US$124.57 billion in 2010 [
6]. In England, colorectal, breast, prostate, and lung cancer cost were estimated to be US$2.34 billion annually for hospital care alone in 2010 [
7]. For the European Union (EU), cancer costs were estimated to be €51 billion in 2009, with 40% accounted for by direct health care costs [
8]. Typically, the cancer care cost curve has a distinctive U-shape distribution, with the most resource-intensive stage of health care at the end-of-life (EOL) [
7,
9‐
11]. Previous studies in United States estimated that one third of all direct medical costs of cancer treatment occur in the final year of the disease, with approximately 80% of the final year amount spent in the last month of care [
12]. Compared with non-cancer patients, cancer patients incur substantially higher EOL costs [
13].
Previous research on EOL medical costs has focused on developed countries, such as United States [
13‐
18], England [
19‐
23], Australia [
10,
24] and Canada [
16,
25], with few studies of EOL medical costs in emerging and developing countries. Also, previous research on the medical costs of EOL care identified socioeconomic disparities, such as racial [
15] and geographic disparities [
14,
15], and different EOL treatment regimes [
26], including inpatient care [
10,
15,
17,
20,
23], outpatient care [
14,
26] and hospice care [
16,
22,
25]. Previous studies also found that patients’ age [
24], place of residence [
14], nationality [
15] and treatment [
27] were associated with end-of-life resource use and costs. Besides a developed country bias, previous EOL cancer cost studies have frequently used data not collected to answer specific EOL cost questions [
20] and heavily relied on publicly available data sets [
16,
19,
25‐
29]. We address both these short-comings, utilizing a specific EOL cancer survey for industrializing China.
For developing countries, China provides an important case study of EOL medical costs for cancer care. Besides being the largest developing country in the world, China presents a significant dual urban-rural economic structure [
30] and also disparities in regional economic structure, with a persistent income gap between urban and rural residents and industrialized versus agricultural provinces. There is a large urban-rural and regional medical consumption gap reflected in a suppressed demand for medical consumption in rural areas, with per capita health cost in rural areas about half of that in urban areas [
31]. Not surprisingly, there are large inequalities between rural and urban residents and residents in poor versus rich provinces in health care level, access and utilization of health services, health financing and the utilization of health resources [
32,
33]. These urban-rural and regional disparities impact the cost, access and utilization of EOL health services [
34‐
36].
In spite of these rural-urban and regional disparities in medical expenditures and access and utilization of health services, previous Chinese studies have not specifically examined the rural-urban and regional differences in the costs of EOL care for patients with cancer. This paper examines geographical disparities in cancer health care costs during the last 3 months of life for deceased cancer patients who died between July 2013 and June 2016 in China.
Discussion
This study revealed substantial urban-rural and regional disparities in various types of cancer treatments and cancer health care costs in the last three months of life of cancer patients between dying between June 2013 and June 2016 in China. Generally, urban patients and western region patients were significantly more likely to receive life-extending treatment, hospitalization and hospice care than those from rural areas or the eastern and western region. Previous studies of cancer patients showed that mean monthly health care costs increased as death approached [
16] especially EOL hospital costs [
20]. Our study revealed that about 40% of the health care expenses occur in the last three months of life, except for the western region with EOL costs just over 50% of total care costs. Patients who received life-extending treatment and inpatient care were more likely to incur higher EOL costs, which is consistent with previous studies that found most health care costs resulted from life-sustaining acute care in the last month of life [
29,
44,
45]. Hospitalization tended to be the main driver of EOL health care costs in China, accounting for roughly 70% of EOL charges, which is consistent with research results in western countries [
14‐
16,
24,
28].
The significant EOL differences in types of treatment, hospitalization and total care costs across regions, reflecting different regional levels of economic development, income and health care provision and social security provision [
35,
46,
47]. The proportion hospitalized, the average per capita hospital admissions, per capita hospital days and medical expenditures were higher in the eastern region than that in the central region. Since medical resources were concentrated in the economically developed eastern region in China, these results were consistent with the difference between eastern and central region. Surprisingly, we found that health care utilization and health care expenditures were highest in western region. There are three possible reasons to explain this result. The cancer patients in western regions were more likely to be minorities and younger, than eastern patients, which is consistent with the previous studies showing that younger age was associated with higher medical costs in cancer patients [
24]. Also, in the western region there were more married, and fewer widowed, patients than in the eastern region,and spouses may have been more likely to choose treatments to extend their partner’s life than non-partner carers [
48]. In addition, the western region had many observations from Shaanxi and Yunnan provinces, with higher GDP and health provision than in other western region provinces,,such as Xingjiang,Inner Mongolia and Qinghai, which may have biased upwards the western region results. Finally, different sociocultural systems across regions, with different commitments to family care for cancer patients, likely impacted on treatment types and hospitalization rates [
46,
48].
Although reimbursement of basic medical insurance helped reduce some of the economic burden imposed by health care expenses, we found that cancer patients still needed to self-pay about half their total EOL health care costs. Urban cancer patients had higher incomes, and their social networks were likely to have higher incomes, than rural cancer patients, which allowed them to access life-extending treatments and hospitalization costs more easily. Also, urban cancer patients had a higher capacity to pay-back borrowed funds than rural patients. We posit that the more limited capacity to borrow by rural cancer patients may have constrained their choice of treatment regime and hospital care. High borrowing requirements for central region patients may also have similarly restricted their treatment regime.
However, the lower EOL health care expenditure for rural cancer patients, and patients from the central and eastern regions, does not mean a more efficient use of medical resources. Rather, it points to the inequities in access to medical services, differences in incomes and disparities in health facilities, which constrained urban-rural and regional patients’ choice of treatment [
14]. As shown in Table
1, most urban patients accessed municipal level or above hospitals, while village clinics were the nearest health facility for many rural patients. Over 50% of Western region patients accessed county hospitals and municipal or above hospitals, while more central region patients accessed private clinics and more eastern region patients accessed village health facilities.
The costs of EOL cancer care has increased dramatically [
49], imposing increased burdens on China’s health care system. American studies reported that about 25% of all United States Medicare spending was for 5% patients who were in the last year of life [
11]. Our study found that about half of the total cancer health care costs in the last three months of cancer patients’ life were covered by medical insurance. While some form of medical insurance is nearly universal in China [
50], basic medical insurance did not cover all cancer treatments. Patients were forced to pay out-of-pocket expenses (including borrowing from family and friends) or go without treatment [
4]. The out-of-pocket expenses accounted for about half of the total care costs, imposing a heavy economic burden on patients and their families.
In China, a hospital deposit is an out-of-pocket-expense required when patients are admitted to hospital, a proportion of which may be returned after cost settlement within 3–5 business days of discharge. We found that about one third of inpatients need to borrow money from others to cover inpatient fees. We recommend that policies and measures should be implemented by the national health insurance agency to help reduce the health care cost disparities between urban and rural locations and across regions. Further, clear clinical guidelines for the EOL care [
14] and good EOL conversations between patients and their health care professionals [
44] would improve EOL cancer patients’ decisions about health care options, especially for rural patients and patients from poor regions.
The use of hospital services for EOL care for cancer patients was higher in China than in the Canada [
51] and the United States [
15] where palliative care was more widespread. Palliative care was relatively underutilized in China, and EOL cancer patients received much less professional hospice services by medical staff than cancer patients in the United States [
14,
15,
52] or England [
22]. Since palliative cancer care services were associated with lower expenditures than hospital-based care [
40], China needs to invest in palliative care facilities to improve the quality of life of cancer patients and their families and avoid over-treatment, which will attenuate medical costs and improve the quality of end-of-life care. Access to palliative care varied by urban-rural location and province. Consistent with previous studies in United States [
14,
15], rural cancer patients in China were less likely to choose hospice care and to use inpatient hospital care at the end of life. There are several reasons for the under-utilization of palliative care. There are relatively few palliative care facilities. Since hospice care is still at the early development stage in China [
28], patients (and many health professionals) lack an awareness of palliative care options. We recommend strengthening through education and publicity activities the benefits of hospice services to improve patients, doctors and health administrators’ awareness of the availability and benefits of hospice care.
Different from the “patient-oriented” culture in western countries, there is a“family-oriented” culture in China. In Chinese traditional culture, family members play an important role in making decisions about treatments to extend cancer patients’ lives [
48]. Improving patients and carers’ knowledge about treatment options, especially hospice care, may decrease the use of hospital facilities [
22]. However, cultural taboos about terminal illness and death are barriers to communication at the end of life [
53]. Therefore, there is a lack of EOL conversations between patients and their professional doctors to guide appropriate cancer treatment decision-making at the end of life [
44]. This requires better medical training and clear protocols to inform cancer patients and their families about treatment options.
Finally, we recommend a review of relevant government policies and practices to both provide both more palliative care and better information to cancer patients to choose appropriate cancer treatments. For individuals, it would be helpful to improve the quality of life during end -of-life care, lower medical costs and ease the financial burden of medical expenses for patients and their families. A better mix of health treatments and service facilities, such as palliative care, would ensure not only a more equitable access to health care for rural cancer patients, and those from disadvantages provinces, but a more efficient allocation of health resources, such as between hospital and hospice care.
We acknowledge a number of limitations in this study. First, we obtained the output variable by retrospective data reported by the family caregivers, raising the possibility of recall bias. Although we tried several methods to reduce the recall bias on the payments, we acknowledge that some data of payments might be missing or inaccurate. But, the health cost expenditure was a significant call on family resources and had to be paid before reimbursement claims from insurance provides confidence on the data. The average per capita health care expenditure was about $19,758 and the average out-of-pocket expenditure is about $11,287 in our study. This compares favorably with the average per capita health care expenditure was about $22,582 for cancer patients from a patients in Jilin province [
54] and a RDPDC report that the average per capita out-of-pocket expenditure was about $9900 for lung and stomach cancer and about $10,000 for Colorectal cancer and esophageal cancer [
55].
Second, although the study examined the total health care costs in the last three months of life, we did not break down the costs of hospice care, drugs, and other treatment types. Future work needs to calculate the cost differential between EOL hospice expenditures versus hospital costs. Third, we started to explore regional differences across three broad geographical regions. This preliminary work revealed the need for more detailed regional investigations of cancer costs and treatments, adjusting for level of development, medical expenditures, types of treatment and health care facilities.
Finally, our conclusions based on the snowball sampling might be biased. Snowball sampling is a non-probabilistic sampling technique, where the elements are not randomly drawn, but are dependent on the subjective choices of respondents. We might have oversampled a particular social network of peers, if the sample included an over-representation of individuals with social connections who share similar characteristics [
56]. While we implemented various measures to attenuate any selection bias, we call for further studies of deceased cancer patients in other parts of China. These limitations need to be taken into consideration in further studies.