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Place of Death and Its Predictors for Local Patients Registered at a Comprehensive Cancer Center

From the Department of Symptom Control and Palliative Care, the University of Texas M.D. Anderson Cancer Center, Houston, TX.

Address reprint requests to Eduardo Bruera, MD, Department of Symptom Control and Palliative Care, Box 8, The University of Texas, M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030-0049; email: ebruera{at}mdanderson.org

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
PURPOSE: To help with planning of a palliative care program, we reviewed the place of death of patients who were registered at our comprehensive cancer center and explored factors that predicted death in the hospital versus death at home.

PATIENTS AND METHODS: A retrospective study was undertaken of local patients who were registered at the University of Texas M.D. Anderson Cancer Center and died during the 1997/1998 fiscal year. Data from the institutional tumor registry and from the State of Texas Bureau of Vital Statistics file were collected and analyzed. The main outcome measures were place of death, patient characteristics associated with place of death, and time from registration at the institution to death.

RESULTS: Of 1,793 local patients, 251 (14%) died at M.D. Anderson Cancer Center; the remaining 86% died elsewhere. A total of 617 (34%) died at home, and 929 (52%) died in an acute hospital setting (including M.D. Anderson). A total of 1,040 (58%) died within 2 years of registration. The risk of hospital death versus home death increased for patients with cancer at a hematologic site (odds ratio [OR], 4.4; 95% confidence interval [CI], 2.8 to 6.8) and black ethnicity (OR, 1.9; 95% CI, 1.4 to 2.6) and decreased for patients who paid with Medicare (OR, 0.71; 95% CI, 0.57 to 0.90).

CONCLUSION: Most patients died in an acute care hospital setting and within 2 years of registration. Our data show some predictors of hospital death for cancer patients and suggest that better hospital palliative care services and integrated palliative care systems that bridge community and acute hospitals are needed.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
AN ESTIMATED 560,000 people died of cancer in the United States in 1997.¹ The number of deaths that are attributable to cancer has nearly doubled in the past 30 years² and is increasing because of the aging of the population. Of the patients destined to die of cancer, more than half live for 1 or more years after diagnosis, and more than one-third live for more than 2 years.³ Patients with advanced cancer develop a number of devastating physical and psychologic symptoms before death.⁴ In recent years, recognition of the need to develop palliative programs to address the needs of these patients and their families has increased.^5-7 Some of the major challenges in establishing such programs are caused by the limited understanding of the illness trajectory in cancer patients.

One important step toward understanding the illness trajectory of cancer patients is to understand better the predictors of place of death. Death at home is favored by a majority of terminally ill cancer patients^8-10; however, access to at-home care until death is available only in a minority of cases throughout the world.¹¹ Researchers have explored the relationship between patient preference for place of death and actual place of death. In the Study to Understand Prognoses and Preferences for Risks and Outcomes of Treatment, critically ill patients with one of nine common conditions (including cancer) were studied.¹² Among patients whose preference for place of death (hospital versus home) was known, patient preference was not a predictor of place of death. Of the 391 patients who preferred to die at home, 55% died in a hospital; of the 93 patients who preferred to die in a hospital, 46% actually died in a hospital. Area of residence was the most powerful predictor of place of death, and risk of dying in a hospital was significantly associated with several of the health system characteristics of the area where patients lived. Odds of dying in a hospital were increased in areas with higher hospital bed availability and use and increased numbers of specialists, and decreased in areas of increased hospice spending. In contrast, a Canadian study of 73 patients found patient preference for death at home to be a predictor of a home death.¹³ Caregiver desire for home death was also a significant factor. In the region where this survey was carried out, there was a well-developed, integrated palliative care system with strong links among the cancer center, acute care hospital, hospice, and primary care physicians, and >80% of cancer patients had access to palliative care before death. These findings suggest that patient preference for home or hospital death may be honored on a more consistent basis if palliative care is available. Another study carried out in the same Canadian health region found that before the inception of a palliative care program, 955 of 1,308 (73%) cancer deaths took place in an acute care hospital or cancer center. This figure had decreased to 498 of 1,276 (39%) 4 years later after the development of an integrated palliative care program.¹⁴

The purpose of this retrospective study was to review the place of death of patients who were registered at our comprehensive cancer center and to explore factors that predicted death in the hospital versus death at home. Our goal in addition to determining the patterns of care before death is to use this information to help develop an integrated system for end-of-life care that can be used at our cancer center, at other hospitals and hospice organizations in the area, and as a community resource.

	PATIENTS AND METHODS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
To determine the patterns of care before death and the place of death of patients who were registered at a comprehensive cancer center, we specifically identified patients who were registered at the University of Texas M.D. Anderson Cancer Center and whose deaths occurred during the 1997/1998 fiscal year (FY98). The population was first limited to patients who resided in the United States because of the potential difficulty of obtaining follow-up information on patients from other countries. Because patients who resided in the Houston area and also died there were the most relevant to our program planning, we focused on this specific population. The Houston area was defined as the central county of Harris and the contiguous counties of Brazoria, Chambers, Fort Bend, Galveston, Liberty, Montgomery, and Waller.

Data were collected from two sources: our institutional tumor registry and files available from the Texas Bureau of Vital Statistics (BVS). This allowed us to gather and compare data that would not have been available from a single source, such as time from diagnosis to death, place of death, and cause of death. Tables within the institutional database were first searched for any patients who had died either inside or outside the hospital between September 1, 1997, and August 31, 1998. Patients who had only basal cell carcinoma or whose diagnosis of cancer had not been confirmed at M.D. Anderson Cancer Center were not included. Patients who were identified on the database were then matched by social security number to a BVS file. In addition, the BVS files were searched for patients who had died but whose deaths had not yet been registered in the institutional tumor registry. Demographic and disease information at registration and death were obtained from the most recently updated (March 2000) tumor registry database. Demographic information collected included residence at time of initial M.D. Anderson registration, ethnic group, marital status, level of education, and place of death. Site of primary cancer and cancer treatments received before registration at M.D. Anderson and at M.D. Anderson were recorded along with time from initial registration to death. Causes of death were obtained from BVS files; these are not consistently available from the tumor registry database.

Using the tumor registry, we initially identified 1,896 Houston area patients who had died within our study period. Of these patients, 1,704 (90%) were matched by social security number to the BVS files. An additional 112 patients (6%) were matched by birth date and death date. The remaining 80 patients were not identified in the BVS files, so we searched the national Social Security Death Index (SSDI) available on the internet (http://www.ancestry.com/search/rectype/vital/ssdi/main.htm). The SSDI records showed that 66 of these 80 patients (82%) died outside the Houston area and the remaining 14 patients had died in the Houston area, although the institutions at which the deaths had occurred were not available through the SSDI.

To identify patients who had died but whose deaths had not yet been registered in the tumor registry, we identified all patients who had registered at M.D. Anderson before or during FY98, whose residence at the time of registration was the Houston area, and who were last known to be alive. Those patients whose social security numbers were known were matched to the BVS file, and 86 additional patients were found to have died. It was not feasible to match the patients without social security numbers because there were > 30,000 BVS records with matching last names. Therefore, in total, 1,982 patients who resided in Houston at the time of registration were identified on both the institutional tumor registry and the BVS or SSDI files. The place of death for 189 of these patients was outside the Houston area. The cohort that died in the Houston area included 1,793 patients. The final cohort for subsequent inclusion in our univariate and multivariate analyses was 1,466 patients whose place of death was either at home or in a hospital and who did not come to M.D. Anderson for a second opinion only (N = 86). Table 1 lists the exclusion criteria.

The continuous variables of age at death, age at first admission, and years from cancer admission to death were evaluated by t test or by the nonparametric Kruskal-Wallis test when the variables were not normally distributed. Variables that were associated with place of death with significance levels of P < .20 were then entered into a multivariate logistic regression model.

	RESULTS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
A total of 1,982 patients who had non–basal cell carcinoma and resided in the Houston area at time of registration died in FY98; 1,793 (90%) of these died in the Houston area and were thus included in the study. Demographic characteristics of these 1,793 patients are listed in Table 2.

The time between initial registration and death of patients is summarized in Fig 1 and shows that 1,040 of 1,793 patients (58%) died within 2 years of registration and 746 (42%) died within 1 year of registration. Cancer was listed as at least one cause of death on 84% of the death certificates. The most common method of payment during the last admission to the hospital was with Medicare, which was designated for 979 of these 1,793 patients (55%).

View larger version (30K): [in this window] [in a new window]   Fig 1. Years from registration to death for 1,793 cancer patients who registered and died in the Houston area during FY98.

View larger version (13K): [in this window] [in a new window]   Fig 2. Place of death of Houston area cancer patients.

View this table: [in this window] [in a new window]   Table 3.  Univariate Associations With Hospital Death (P .2)

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

Our study has a number of limitations. M.D. Anderson is a tertiary referral center, and the majority of patients who attend are not local area residents. To examine the patient population to whom we could potentially offer continuity of care until death and to whom an integrated local palliative care service would be of most benefit, we chose to limit the study to Houston area residents who died in the area. With this in mind, we also excluded those patients who attended only for a second opinion. Nursing home deaths were excluded from the univariate and multivariate analyses as they were a small group (93 of 1,793 [5%]) and further meaningful subgroup analysis would be unreliable. In addition, older age was likely to be a confounding variable in this group of patients. Additional research should focus on populations with higher frequencies of nursing home deaths to characterize better the predictors of place of death in these settings.

Several studies have shown that the preferred place of death for the majority of terminally ill cancer patients is home.^8-10 However, this may not always be the case; a recent US survey of 340 Veterans Affairs patients found that only 35% of patients with advanced chronic diseases, including cancer, agreed that it was important to die at home; 53% of patients neither agreed nor disagreed.²⁰ The patients in this study represent a population that may have specific sex, financial, and social support issues. Unfortunately the patients’ or families’ preference for place of death was not available from our data sources, and it was therefore not possible to determine whether patients died in a setting of their choice. In our study, only approximately one third of patients died at home. Additional research is needed to clarify cancer patients’ preference for place of death in the US healthcare system.

During the period of time covered by this study, our hospital and the great majority of cancer centers in the United States and other countries did not have palliative care programs. Our data demonstrate the need to establish programs for seamless delivery of palliative care that integrate acute cancer care with care available in the community. The establishment of a more integrated care system would likely increase the proportion of patients whose place of death reflects their preference, thus resulting in more deaths in the home environment. The development of such programs is likely to require the establishment of links with existing community-based physicians, hospices, and home health programs to develop common care pathways; an alternative is the establishment of community care extensions from comprehensive cancer centers.

It is noteworthy that in our study, 42% of local patients who died in the local area had registered within the past year. This points to the need for end-of-life care planning for many patients to begin soon after registration at a cancer center. Early planning might enable more patients to receive the type of end-of-life care they wish for and ultimately to die where they choose. Of course, such planning is sometimes hindered by the very difficult challenge of prognostication and bad news breaking at a time when patients are particularly vulnerable and are trying to remain hopeful as they begin new treatment for their disease. The concept that early planning can affect place of death should be addressed in future research. If it is found to be beneficial, then improvement in this kind of planning will likely require carefully integrated multidisciplinary efforts among oncologists, palliative care specialists, social workers, counselors, hospice physicians, and nurses.

The results of our multivariate analysis highlighted some patient populations with increased risk of hospital death. Patients with hematologic malignancies and those of black ethnicity had increased odds of a hospital death (OR, 4.4 and 1.9, respectively). Other researchers have also found that patients with hematologic malignancies are less likely than those with other cancers to die at home. Higginson et al,¹⁵ in a large 10-year analysis of more than 1.3 million cancer deaths in England, observed a reduced chance of dying at home for patients with hematologic malignancies (16% v 29% for other cancers, excluding breast). The increased risk of hospital death for these patients may be due to the perception that hematologic malignancies are generally responsive to treatment and that therapy for relapsing disease remains a viable option, even as the disease becomes decreasingly sensitive to therapy and the patient becomes increasingly debilitated. In addition, side effects of aggressive treatment of hematologic malignancies (eg, high-dose chemotherapy, bone marrow transplantation) commonly result in hospitalization and have a considerable associated mortality. Patients with hematologic malignancies are less likely to have major pain syndromes or cachexia as compared with those with solid tumors.^21,22 These factors may result in fewer hospice referrals. In the United States, less than 5% of Medicare hospice enrollees have leukemia or lymphoma.²³ Similar findings have been observed outside the United States. In an Australian, population-based study of 2,800 cancer patients, those with hematologic malignancies were less likely than others to have hospice care, and patients who received hospice services were more likely than others to die at home or in an inpatient hospice.²⁴

Another finding from our study was that black patients were 1.9 times more likely to die in a hospital than at home. There are a number of factors that could have contributed to this finding. One possible factor is that black patients are more apt to mistrust the medical system given the notable instances of exploitation by medical researchers over many years, the most widely known being the Tuskegee Experiment.²⁵ Other research has shown that those of black ethnicity are less likely to accept physicians’ advice that there is nothing more to be done, more likely to select aggressive interventions, and less likely to fill out advance directives than are Hispanics and non-Hispanic whites.²⁶ Hospice referral may be perceived as an attempt to reduce the level of care. Black patients are underrepresented in hospice enrollment; in the study by Christakis and Escarce²³ of 1,990 Medicare claims data, >92% of the 6,451 hospice enrollees studied were white. This is noteworthy because hospice enrollment often makes home care more feasible and death at home more likely.²⁷ Other factors that have been shown to influence where patients die, such as caregiver support and patient and caregiver wishes, should be better characterized in different ethnic groups in future research.

Approximately half of the patients in our study used Medicare for payment. In our study, Medicare patients were less likely to die in a hospital. This may be related to the fact that patients who were not on Medicare may not have had other insurance to cover hospice or home health care. People who are covered by Medicare make up approximately 80% of all hospice patients in the United States.²⁸ When hospice or home health care is not available, the hospital often becomes the most viable location for adequate symptom management for advanced cancer patients. Patients who are successfully referred to hospice seem to be more likely to die at home.^24,27 Unfortunately, we could not obtain reliable information about hospice referral for our patient population. The Houston area has more than 20 active hospice programs, and therefore, availability is not likely to be an issue. Our study cannot answer a number of important questions, such as how many Medicare-eligible patients took advantage of the hospice benefit and why they did or did not use this eligibility. During the period 1994 to 1998, 45% of Medicare cancer decedents used hospice.²⁹ Future research should further address the issues of hospice access.

A number of studies have found age and sex to be predictors of place of death—older patients and women are less likely to die at home than younger patients and men^14,17,18—however, the evidence supporting this is not conclusive.³⁰ In our study, neither of these variables was found to be a predictor of place of death. Comorbidities increase exponentially as patients age; this may not have been as relevant in our patients because of younger age at death than in the general population (in our group, the median age of death was 65 for both sexes). Moreover, some of our older patients were not included in the analyses because of exclusion of patients who died in a nursing home. Sex of the patients may also be more relevant in noncancer populations in which the difference in age at death is significantly greater for women.

Our study and others^15,18 indicate that the most common place of death of cancer patients is an acute care hospital, and this is likely to continue for many years. It is vital that improved palliative care services be developed for patients in this setting and in particular for patients who are at higher risk of death in a hospital, such as those with hematologic malignancies.

Future research in other cancer centers is needed to confirm our findings, but we believe that our results can be generalized to most comprehensive cancer centers in the United States and around the world. Such institutions are usually located in large urban centers such as Houston. Future research should also focus on identification of factors other than those we describe that may influence where cancer patients die.

In conclusion, more than half of the local area patients served by our comprehensive cancer center in a metropolitan area died within 2 years of initial registration, and most died in an acute care hospital. Approximately one-third of patients died at home. Only 14% died in the cancer center where they were treated; therefore, problems exist with continuity of care for the majority of patients. In addition, some specific factors have been identified for higher risk of dying in an acute care facility, including hematologic malignancy, black ethnicity, and non-Medicare coverage. These data demonstrate a great need for improved delivery of palliative and end-of-life care for our advanced cancer patients. There is evidence that an integrated palliative care program can significantly reduce the number of cancer-related deaths in acute care facilities and increase access to palliative care for patients with terminal cancer.¹⁴ The development of an integrated system for end-of-life care between the institution and other hospices and hospitals in the area might enable the wishes and needs of our patients to be better met.

	ACKNOWLEDGMENTS

 
This study was funded by the Texas Tobacco Settlement Fund.

We thank Kerry Wright from the Department of Scientific Publications and the Department of Medical Informatics at the University of Texas M.D. Anderson Cancer Center. We also thank the State of Texas Department of Health Bureau of Vital Statistics for the provision of death certificate data.

	REFERENCES

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Submitted July 25, 2001; accepted January 4, 2002.

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