Abstract
Background:
The impact of palliative home care programs on in-patient admissions and deaths has not been appropriately established.
Aim:
The main objectives of this study have been to evaluate the frequency of in-patient hospital deaths and the use of hospital resources among cancer patients in two areas of the Madrid Region, as well as to assess differences between one area with and one without a palliative home care team (PHCT) in those variables.
Design and setting:
We conducted a population-based study comparing two adjacent metropolitan areas of approximately 200,000 inhabitants each in the Madrid Region, Spain, measuring in-patient deaths, emergency room admissions and in-patient days among cancer patients who died in 2005. Only one of the two areas had a fully established PHCT.
Results:
524/549 cancer patients (95%) had an identified place of death: 74% died in hospital, 17% at home, 6% in an in-patient hospice and 3% in a nursing home. The frequency of hospital deaths was significantly lower among patients of the PHCT area (61% versus 77%, p < 0.001), as well as the number of patients using emergency and in-patient services (68% versus 79%, p = 0.004, and 66 versus 76%, p = 0.012, respectively). After adjusting for other factors, the risk of hospital death was lower among patients older than 80 (OR, 95% CI, 0.3, 0.1–0.5), higher among patients with hematological malignancies (OR 6.1, 2.0–18.9) and lower among patients of the PHCT area (OR 0.4, 0.2–0.6).
Conclusions:
Our findings suggest that a PHCT is associated with reduced in-patient deaths and overall hospitalization over the last two months of life.
Keywords
Introduction
Most patients with advanced cancer prefer to receive care and die at home.1,2 However, most patients die in hospital.2–8 During the last months of life, cancer patients undergo frequent in-patient admissions.9,10 In the USA, the structure and availability of healthcare resources appear to influence place of death more than the actual preference of patients and families.11–13 Some studies have suggested that home care teams decrease the number and duration of in-patient admissions and increase the rate of home deaths.14–22 However, the number of studies is small, there is quite a variable level of physician participation and the role of these home-based programs in reducing the rate of hospital deaths among cancer patients has not been completely established. 23 Health regions around the world have attempted to establish palliative care programs as a way of improving the quality of life of terminally ill patients and their families and also as a way of reducing utilization of expensive acute care hospital resources.24,25
The percentage of patients dying in hospital as compared to those dying at home, and the possibility of spending most of the last weeks of life at home, have been utilized as quality indicators of palliative care programs. 26 Although there are several limitations, these measures can be used to evaluate programs over time, as well as to compare the impact of different programs on care at the end of life.3,6,7,14–22,27,28 The World Health Organization (WHO) and a number of other international organizations have focused on the importance of research in factors associated with place of death in different regions of the world. 29
In this population-based study, we sought to investigate the frequency of in-patient hospital death and the use of hospital resources (measured as emergency room admissions, in-patient admissions and in-patient days) in two metropolitan areas of the Madrid Region. We hypothesized that a palliative home care team (PHCT) established in one of these areas could influence those variables.
Methods
Study location
The Madrid Region has a population of approximately 6 million, essentially of an urban nature (94%). All residents of the Region have access to universal healthcare provided by the National Health System.
In 2006 the Madrid Region activated an integrated palliative care program aimed at providing universal access to all levels of palliative care services for the community. Until that year, resource distribution was highly irregular among the different regional healthcare areas. Six of the eleven health areas established a PHCT in 1998. Patients living in an area without a PHCT could not use the PHCT from the other areas. Each team provided care to 300,000–700,000 inhabitants. The team was composed of two physicians, two nurses, an assistant nurse and an administrative clerk. The PHCTs conducted regular follow-up of patients referred by acute care hospitals, medical oncologists or family physicians when these patients were perceived by the referring physician as having a progressive incurable disease and high symptom distress.
We compared two adjacent areas of approximately 200,000 inhabitants each. Area 1 [named Alcobendas-San-Sebastian de Los Reyes] had access to a PHCT and from now on will referred to as the PHCT Area. Area 2 [named Alcala de Henares] had no access to a PHCT in 2005 and from now on will be referred to as the Non-PHCT Area. Both health areas had full access to major university hospitals, oncology services, family physicians and in-patient hospice beds.
Average income per capita in the Non-PHCT Area was similar to the average Spanish income, while in the PHCT Area, one of the sub-areas [San-Sebastian de Los Reyes] had approximately 20% above-mean income, and the other sub-area [Alcobendas] approximately 50% above the Spanish mean income. 30 The PHCT Area also had a higher availability of acute hospital beds (2.2 versus 1.6 beds per 1000 people).
Study design
We reviewed cancer deaths for 2005 for all adult cancer patients over 18, in both health regions. The Madrid Regional Statistics Institute (IECM) provided the individual data of deceased patients.
This study was approved by the Institutional Review Board of the Primary Care Program of each of the two health areas. Appropriate authorization was obtained from the Madrid Regional Government and the Data Protection Agency. 31
In Spain the death certificate has two components: one of them is called the Medical Death Certificate (MDC), which includes the address where the death took place. The other component is the Statistic Death Bulletin (SDB) which is used for statistical purposes and includes the patient’s main diagnosis and other demographic characteristics. Since 2009, a new document has been implemented, containing both MDC and SDB information in a single form and including a new place-of-death checklist. In order to double-check the appropriate place of death, we cross-linked the information from the MDC regarding address with the Tanatos Registry kept by funeral directors. This registry determines the exact address where a body has been collected for funerary purposes.
In-patient care data were obtained from the register of the public and private hospitals of the Madrid Region, and emergency room visit data were obtained from the register of the major public hospitals available in the health regions. All the institutions kept electronic activity records. We only considered the last two months before death [62 days] for the purpose of this study. We used the PHCT Register to check the patients who had been followed up by this Team.
Variables
We classified the cause of death according to International Classification of Diseases (ICD)-10 and, for the purpose of this study, we used all the codes corresponding to neoplastic diseases. These include, according to anatomic location, digestive tract codes, C00–C26, C48, C451; respiratory codes, C30–C34, C37–C39, C45.0, C45.2; breast code, C50; genitourinary codes, C51–C58, C60–C68; hematological codes, C81–C85, C88–C96, D46; and other codes, C40, C41, C43, C44, C49, C69–C80, C97, C457–C479, D00–D45, D47, D48.
Other variables include demographic characteristics, such as age, gender, marital status and place of residence.
For the purpose of socioeconomic level we used a deprivation index based on residence census information. This index has been elaborated for small areas (census tracts with a median of 1000 inhabitants) of the Madrid Region based on several census (2001) indicators, 32 and the areas have been categorized into quintiles in which the fifth is the most unfavorable one.
With regard to healthcare utilization, we determined in-patient hospital care within the last two months before death, access to a PHCT, number of times the patient was seen by an emergency room and total number of days the patient remained admitted during the study period. Visiting the emergency room did not mean being admitted to the hospital, so we collect data about both variables.
Data analysis
We analyzed the probability of dying in hospital in accordance with different sociodemographic and clinical variables and in accordance with the assistance of a PHCT using bi-variate and multi-variate analysis by logistic regression. We calculated the odds ratio and 95% confidence interval (CI) using the statistical package for the social sciences (SPSS V15).
Results
There were a total of 549 adult cancer deaths in the two areas during 2005. The age-adjusted population mortality rate according to the Standard European Population was 2.23 cancer deaths per 1000 inhabitants. The rate was the same in the two areas.
In the vast majority of cases the place of death was obtained from the MDC and/or the Tanatos Registry. There were 10 cases of disagreement between Tanatos and the MDC and, in such cases, the Tanatos-registered place of death was used as the appropriate location. In 21 cases where this information was not available, the information was ultimately available from hospital medical records. In 25 [4.6%] cases the exact place of death could not be determined.
Overall, 524 patients were studied for place of death. A total of 387 (74%) patients died in hospital, 90 (17%) died at home, 29 (6%) died in an in-patient hospice and 18 (3%) died in a nursing home.
Table 1 summarizes the differences by place of death and other sociodemographic and clinical variables in each of the two different areas. Hospital death frequency was significantly lower among patients in the PHCT Area (61% versus 77%, p < 0.001). The PHCT Area patients used emergency services and in-patient services less frequently than those in the Non-PHCT Area (68% versus 79%, p = 0.004, and 66 versus 76%, p = 0.012, respectively).
Patient clinical and demographic characteristics in the palliative home care team (PHCT) and Non-PHCT Areas.
Last 62 days before death
Table 2 summarizes the probability of hospital death and differences in both bi-variant and multi-variant analyses. After adjusting for other factors, patients in the PHCT Area and patients aged over 80 had a significantly lower risk of hospital death, whereas the risk among patients with hematological malignancies was significantly higher. In the bi-variant analysis, the risk of hospital deaths was significantly higher among patients with lower socioeconomic levels. There was no difference by gender or marital status.
Risk of in-patient hospital death according to clinical and demographic characteristics.
Adjusted Odds Ratio (OR) and 95% confidence interval (CI) from a multiple logistic regression model with all variables listed in the table.
PHCT: palliative home care team
The probability of a hospital death increased in direct relationship with the number of visits to the emergency center and/or the in-patient hospital and with the number of in-patient days. The mean of in-patient days during the last two months of life among patients who died at home, having been admitted at least once, was 7, versus 17 among patients who died in hospital [p < 0.001].
Table 3 summarizes the differences according to place of death and hospital utilization between patients followed up by a PHCT and those who did not receive this kind of assistance at home (in the PHCT Area and in the Non-PHCT Area). PHCT patients had a higher percentage of home deaths compared with the rest of the patients (67.6% versus 12.5%, OR after adjusting for other factors [95% CI] 23.4, 9.1–60.0).
Differences according to place of death and hospital utilization between patients followed up by a palliative home care team (PHCT) and those who did not receive this kind of assistance at home (in the PHCT Area and in Non-PHCT Area).
Last 62 days before death.
Statistically significant (p < 0.05) between patients in the Non-PHCT Area and patients in the PHCT Area who did not receive assistance from the PHCT.
Statistically significant (p < 0.05) between patients followed up by the PHCT and patients in the PHCT Area who did not receive assistance from the PHCT.
Discussion
To our knowledge this is one of the first population-based studies addressing the association between hospital mortality and presence of a PHCT in two areas within the same healthcare system, and one of the first population-based studies to analyze place of death in Spain. A study has been published recently about place of death in Andalusia (Spain) in 2009 using the Death Certificate, but the authors could only find less than 50% of the patients’ places of death. 33
Our study found that the frequency of in-patient hospital deaths and use of hospital resources during the last two months of life was significantly lower in the PHCT Area. The risk of a hospital death was significantly lower when patients had access to a PHCT, after adjusting for other factors [OR 0.4, 95% 0.2–0.6]. The two healthcare areas belong to the urban part of the Madrid Region and they are part of the same healthcare system. Patients have access to the same level of family physician coverage, medical oncology specialists and tertiary hospital in-patient admissions. Clinical and demographic characteristics of patients in both areas were quite similar. In spite of everything, the differences we found between the PHCT and the Non-PHCT Areas may not necessarily have been due to the presence of the PHCT, but to other regional differences we did not measure. However, when comparing both regions for only those patients who did not make use of the PHCT, there were no large differences. Therefore, the observed differences seem to suggest that the PHCT allowed patients to remain out of the in-patient hospital facilities and to die more commonly in a non-hospital setting. Our findings regarding patients followed up by the PHCT are similar to those reported recently by our group in an observational cohort study. 34 The PHCT seems to be the strongest factor to explain differences between the PHCT Area and the Non-PHCT Area regarding place of death and hospital utilization by cancer patients who died in the study areas. In Canada, similar findings have been reported when comparing hospital deaths and total in-patient days of the last admission before and after the inception of a regional palliative care program. 35 A study in Belgium strongly relates place of death with involvement of palliative care services. 22
A number of studies have attempted to establish the relationship between home palliative care programs and in-patient deaths. Grande et al. 15 randomized 229 palliative care patients to hospital-at-home versus standard care. Patients admitted to hospital-at-home were more likely to die at home than controls. However, the findings were limited, since a number of patients allocated to one of the treatment groups did not receive such treatment. Jordhøy et al. 20 conducted a cluster randomized control trial of a palliative care intervention versus conventional care. They enrolled 434 patients who had incurable malignant disease and an expected survival of 2–9 months. More patients receiving palliative care were able to die at home, although time spent at home was not significantly increased and overall hospital utilization was similar in both groups. Brumley et al. 21 randomized 298 terminally ill patients to usual care versus in-home palliative care plus usual care delivered by an interdisciplinary team. They found that patients randomized to home palliative care were more likely to die at home and less likely to visit the emergency department or be admitted to the hospital than those receiving usual care. The authors suggested that this resulted in a significant decrease in care cost.
Our findings are consistent with those of the randomized controlled trials. One of the limitations of clinical trials is the relatively artificial environment created by eligibility criteria and settings where these studies are conducted. It is encouraging that our population-based study supports the fact that a relatively simple physician- and nurse-based palliative home care intervention is capable of significantly reducing the number of in-patient deaths. Since the vast majority of the cost of end-of-life care is related to in-patient care, our findings could be encouraging as a potential for substantial cost savings. However, cost savings are predominantly linked with the number of days of in-patient care during the last months of life, rather than the actual location of death. More research is required to better determine if PHCTs are capable of reducing not only the number of in-patient deaths, but also the overall duration of in-patient days during the last months of life.
Our findings regarding in-patient admissions and total number of in-patient days during the last two months of life are consistent with those of studies conducted in Canada and Belgium.9,10 These findings emphasize the very large cost of caring for advanced cancer patients in the last months of life. Unfortunately, this high cost of acute care institution admissions does not seem to correlate with better symptom control and overall family distress, particularly for those patients who die in hospital.36,37
Our study found that patients with lower socioeconomic status had a higher risk of an in-patient death. A number of studies have made similar findings.34,38,39 A Swedish study observed no significant association between income and in-patient deaths. 40 These findings might reflect the outstanding level of Swedish social services, including intensive home support and paid leave of absence for relatives. Some authors suggest that level of social support is one of the most important factors that influence place of death.41–43 These findings could be important for the planning of palliative home care programs. Programs in areas where there is higher socioeconomic level and social support should be expected to be able to achieve higher rates of home death. Programs should pay specific attention to patients with lower socioeconomic status in order to develop appropriate policies addressing their needs.
Regarding the remaining demographic variables (including age, gender and marital status), only age had significant association with place of death. People over 80 had the highest proportion of home deaths. Our findings are similar to those found in Italy, but opposite to other European countries. This could be a characteristic common to Mediterranean countries and exemplifies how cultural differences determine patterns in place of death.13,38
Our findings regarding a significantly higher risk of in-patient death among patients with hematological malignancy are consistent with those of our group and others showing a higher in-patient mortality rate, higher numbers of intensive care unit (ICU) deaths and later referral to palliative care teams in patients with hematological malignancies.3,5,7,8,13,41,44,45 More research is necessary to better understand the different mechanisms and possible ways to improve end-of-life care among patients with hematological malignancies.
Our study has a number of limitations. Firstly, the absence of a single register of mortality, containing all the information, could lead to loss of data. However, we used multiple sources of cross-referencing, including identity card number, multiple names and surnames, social security number and date of birth. We believe this was highly effective, since the place of death was not identified in less than 5% of patients in our sample. Secondly, the socioeconomic level was assigned to each patient based on the socioeconomic level of small residence areas. However, this methodology has been found to be valid when there are no individual socioeconomic data. 46 Finally, this study was limited to two specific urban areas, and there could be confusing and unidentified factors that explain differences regarding in-patient deaths. Our results should be considered preliminary and they need to be reproduced by other studies conducted in different areas. In fact, as the methodology has proved to be reliable, we plan to do the study in a larger number of areas to further evaluate whether differences between areas are indeed due to the presence of a PHCT. Studies should also be conducted comparing similar areas before and after the inception of palliative care programs, in an effort to determine the clinical and financial impact of such programs on end-of-life care.
Our findings have practical implications. Improvements can be achieved in aspects of end of life through public health policy. Policy strategies should be developed to facilitate home death.
We conclude that in-patient mortality and use of hospital resources during the last two months of life were significantly lower in an area with a PHCT. Home deaths were significantly higher among patients over 80 and lower among those with hematological malignancies.
Footnotes
Acknowledgements
Our thanks are due to María Esteban-Vasallo for preparing the database and for her research assistance. We also thank Luis Miguel Blanco-Ancos for assistance in the database computer treatment and Mr Martin Smyth, BA, for his help in correcting the English and for his editorial contributions.
Funding
Dr Eduardo Bruera is supported in part by the National Institutes of Health (Grant numbers RO1NR010162-01A, RO1CA122229-01 and RO1CA124481-01).
Conflict of interest statement
The authors declare that there is no conflict of interest.
