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Understanding Economic And Other Burdens Of Terminal Illness: The Experience Of Patients And Their Caregivers

E. Emanuel, D. Fairclough, J. Slutsman, L. Emanuel
Published 2000 · Medicine

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Serious illness has an adverse effect on patients, family, and friends. Previous studies have demonstrated that caregivers of patients with cancer and dementia have increased health problems and psychosocial stress (1-7). For example, studies have reported that up to one third of spouses of patients with terminal cancer have depressive symptoms (8, 9). Families of terminally ill patients also experience adverse economic effects. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) reported that families of seriously ill patients experienced substantial economic losses. In 20% of families, a family member had to stop working; 31% of families lost most of their savings (7). Data on the cause of these adverse effects are scarce. The SUPPORT investigators stated, Although our results document substantial burdens to family members of seriously ill patients, they do not explain the mechanism of these burdens Our results highlight the need for future research efforts to examine the mechanism of these burdens (7). In addition, without understanding the cause of these burdens, it is difficult to identify interventions that could meet the care needs of terminally ill patients without imposing additional hardships on their families and friends. To determine the cause of economic and other burdens and to identify some potential interventions that could mitigate them, we studied the experiences of 988 terminally ill patients with different illnesses and their 893 caregivers. Methods Recruitment Our methods have been described in detail elsewhere (10) and are outlined in Figure 1. Briefly, patients were recruited on the basis of physician determination of terminal status. Because many terminally ill patients are no longer admitted to hospitals and do not die in hospitals, we recruited through outpatient settings. Similarly, because SUPPORT found that patients' 6-month survival rates determined by physicians were almost as accurate as those determined by using formal medical criteria (11) and because in routine practice, such as hospice referral, physicians determine terminal illness without using formal criteria, we relied on physician determination of patients' terminal status. Figure 1. Flow diagram of patient identification and enrollment. Site Selection We divided all 50 states into four census regions: northeast, south, midwest, and west. The Group Health Association of America issued a report on the proportion of the insured population that was enrolled in health maintenance organizations (HMOs) in the 54 largest metropolitan statistical areas (MSAs) (12). According to this report, we classified MSAs as having high or low managed care penetration. High penetration was defined as HMO enrollment of 20% or more of the population in 1991, the last year for which managed care penetration data were available before site selection. In each of the four regions, one MSA with high HMO penetration was randomly selected: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; and Birmingham, Alabama. Among the MSAs with low penetration, one site was selected: Brooklyn, New York. To represent the 24% of the U.S. population that resides in rural areas, one site was randomly selected among all non-MSA primary sampling units (that is, all non-MSA counties or collections of counties): Mesa County, Colorado. Physician Identification At each site, lists of physicians were obtained from state boards of medical registration, medical societies, and specialty societies. From these lists, physicians were selected by simple random sampling that aimed for the same patient sample size in each site. At the rural site, however, all physicians were selected because of small numbers. Selected physicians were mailed a letter stating that the purpose of the study was to learn about how these patients [with significant illness] experience health care and that patient and caregiver interviews would be done in person. Physicians were asked to identify all of their patients who had a significant illness [except HIV infection or AIDS] and a survival time of six months or less, in your opinion. The physicians used their own discretion to decide whether to discuss the study with patients before identifying them. A total of 383 physicians referred patients, whom we then interviewed. Patient Selection No patient or caregiver was paid to participate in the study. Patients were eligible to participate if they had any substantial illness, excluding HIV infection or AIDS; had an estimated survival time of less than 6 months, as determined by their physician; spoke English; had no hearing difficulty; and were able to arrange an interview time and place and sign a consent form. Patients were not randomly selected; instead, all patients identified by physicians were sent a letter that explained the study and included a postage-paid opt-out card. The letter stated that the study aimed to understand the attitudes of patients with a significant illness and their caregivers towards the quality of the patient's health care. Patients were informed that the interview would be conducted in person. If the opt-out card was not received within 2 weeks, the patient was contacted to arrange an interview. Physicians identified 1472 patients, of which 341 were ineligible (194 died and 116 became mentally incapacitated before being interviewed; 31 did not speak English or had hearing limitations that precluded interviews). Of the 1131 eligible patients, 119 declined to participate, 24 could not be located, and 988 completed interviews (response rate, 87.4%). Caregiver Selection Patients were asked to identify their primary caregiver, who was specified as the family member, friend, or other person who provided the most assistance. Caregivers were ineligible if they could not speak English, had hearing limitations that prevented them from understanding questions, or were not able to arrange an interview time and place or sign a consent form. Seventy of 988 patients reported that they did not have caregivers. Three caregivers did not speak English, and 22 caretakers declined to participate. Therefore, 893 caregivers were interviewed (response rate, 97.6%). Survey Development Survey development was guided by a conceptual framework that has been outlined elsewhere [13]. In conjunction with the Center for Survey Research and the National Opinion Research Center, we developed survey instruments after 1) performing a literature search; 2) conducting 15 focus groups that included patients, caregivers, elderly persons, and health care providers; 3) conducting six in-depth interviews with terminally ill patients and caregivers; 4) creating the survey instruments; 5) conducting cognitive, behavioral, and reliability pretests; 6) submitting the survey instruments for review by an expert panel; and 7) refining the final survey. Eighteen patients and 15 caregivers in Cleveland, Ohio, and Dallas, Texas, pretested the survey instruments. The patient survey contained 135 questions, and the caregiver survey contained 118 questions. Questions focused on health status and symptoms, social supports, communication with health care providers, personal and spiritual meaning, care needs, end-of-life care plans, economic burdens, sociodemographic characteristics, euthanasia and physician-assisted suicide, and interview-related stress. Survey questions on symptoms were adapted from the Wisconsin Brief Pain Questionnaire (14), the Medical Outcomes Study 36-Item Short-Form Health Survey (15, 16), and the Eastern Oncology Cooperative Group performance measure (17). Questions on social supports were adapted from the Medical Outcomes Study social support survey (18). Using questions from Siegel and colleagues (4), Rice and coworkers (19), and SUPPORT (7, 20), we asked patients and caregivers about their need for assistance in four areas: transportation, nursing care, homemaking, and personal physical care. Questions determined the degree of assistance needed in each area, the person who provided assistance, the use of home health care or hospice services, and any unmet needs for additional assistance. Questions regarding economic burdens and financial expenditures on health care were taken from Epstein and colleagues (21) and Covinsky and coworkers (7). Some questions on physicianpatient communication were adapted from SUPPORT (20). Questions on euthanasia and physician-assisted suicide were adapted from Emanuel and colleagues (22). Some of the questions on physicianpatient communication, personal meaning, advance care planning, and economic burdens of care were newly developed. The instruments are available from the authors. Interview Process Twenty-four interviewers from the National Opinion Research Center who were trained to interview terminally ill patients conducted all interviews in person between March 1996 and March 1997. Human Subjects Approval The protocol, letters, survey instruments, and consent documents were approved by the institutional review boards at Harvard Medical School and the Dana-Farber Cancer Institute (Boston, Massachusetts), as well as at 38 medical institutions in the six study sites. The patient identification and selection procedures were approved as being consistent with the recommendations of the institutional review board guidebook (23). We ensured that participants had no emotional contraindications to study involvement by asking physicians to recommend appropriate patients. The investigators kept patients' personal information confidential and did not use it for any commercial purposes. The identifying information did not include data on extremely sensitive matters, such as history of drug abuse, sexually transmitted diseases, or psychiatric illness. Patients were able to decline participation through the opt-out card, when they were contacted to arrange an interview, when the interviewer arrived to conduct the interview, and a
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