Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers
ABSTRACT Terminal illness imposes substantial burdens--economic and otherwise--on patients and caregivers. The cause of these burdens is not understood.
To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions.
In-person interviews of terminally ill patients and their caregivers.
Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado.
988 terminally ill patients and 893 caregivers.
Needs for transportation, nursing care, homemaking, and personal care; subjective perception of economic burden; expenditure of more than 10% of household income on health care costs; caregiver depression and sense of interference with his or her life; and patient consideration of euthanasia or physician-assisted suicide.
Of all patients, 34.7% had substantial care needs. Patients who had substantial care needs were more likely to report that they had a subjective sense of economic burden (44.9% compared with 35.3%; difference, 9.6 percentage points [95% CI, 3.1 to 16.1]; P = 0.005); that 10% of their household income was spent on health care (28.0% compared with 17.0%; difference, 11.0 percentage points [CI, 4.8 to 17.1]; P < or = 0.001); and that they or their families had to take out a loan or mortgage, spend their savings, or obtain an additional job (16.3% compared with 10.2%; difference, 6.1 percentage points [CI, 1.4 to 10.6]; P = 0.004). Patients with substantial care needs were more likely to consider euthanasia or physician-assisted suicide (P = 0.001). Caregivers of these patients were more likely to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points [CI, 0.4 to 12.8]; P = 0.01) and to report that caring for the patients interfered with their lives (35.6% compared with 24.3%; difference, 11.3 percentage points [CI, 5.0 to 17.7]; P = 0.001). Caregivers of patients whose physicians listened to patients' and caregivers' needs had fewer burdens.
Substantial care needs are an important cause of the economic and other burdens imposed by terminal illness. Through empathy, physicians may be able to ameliorate some of these burdens.
- SourceAvailable from: Beatrice Ioan
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- "We found that the access of Roma to healthcare is often limited or hampered by the lack of financial resources and health insurance. Our results are in line with other studies in the field showing that Roma are often faced with economic problems and poverty (Revenga et al. 2002), the patients and their families experiencing, many times, financial difficulties (Emanuel et al. 2000). In the Romanian healthcare system, patients are registered to one family physician of their choice, who provides the necessary basic care and is the gatekeeper to the next echelons of medical care. "
ABSTRACT: In order to assure optimal care of patients with chronic illnesses, it is necessary to take into account the cultural factors that may influence health-related behaviors, health practices, and health-seeking behavior. Despite the increasing number of Romanian Roma, research regarding their beliefs and practices related to healthcare is rather poor. The aim of this paper is to present empirical evidence of specificities in the practice of healthcare among Romanian Roma patients and their caregivers. Using a qualitative exploratory descriptive design, this study is based on data gathered through three focus groups with 30 health mediators in the counties of Iasi and Cluj (Romania). We identified various barriers to access to healthcare for Roma patients: lack of financial resources and health insurance coverage, lack of cognitive resources or lack of personal hygiene, but also important cultural issues, such as the shame of being ill, family function, disclosure of disease-related information, patient's autonomy, attitudes towards illness and health practices, that should be considered in order to create a culturally sensitive environment in Romanian medical facilities:… The role of the health mediators within the context of cultural diversity is also discussed, as cultural brokers contributing to health care quality among Romanian Roma patients Bridging cultural differences may improve patient-healthcare provider relationships, but may have limited impact in reducing ethnic disparities, unless coupled with efforts of Roma communities to get involved in creating and implementing health policies.Medicine Health Care and Philosophy 02/2013; 16(4). DOI:10.1007/s11019-013-9467-3 · 0.91 Impact Factor
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ABSTRACT: Provision of end-of-life care in North America takes place across a multitude of settings, including hospitals, ambulatory clinics and home settings. As a result, family caregiving is characteristically a major component of care within the home. Accordingly, economic evaluation of the end-of-life care environment must devote equal consideration to resources provided by the public health system as well as privately financed resources, such as time and money provided by family caregivers. This paper addresses the methods used to measure end-of-life care costs. The existing empirical literature will be reviewed in order to assess care costs with areas neglected in this body of literature to be identified. The Ambulatory and Home Care Record, a framework and tool for comprehensively measuring costs related to the provision and receipt of end-of-life care across all health care settings, will be described and proposed. Finally, areas for future work will be identified, along with their potential contribution to this body of knowledge.Journal of aging research 05/2011; 2011:374237. DOI:10.4061/2011/374237
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- "Caregiving and home health care services may provide the help needed for older adults who wish to remain at home. Unfortunately, insurance does not pay for informal caregiving services (Raphael, Ahrens, & Fowler, 2001), and for some patients, the cost for in-home care is so high that a second job, a loan or mortgage, or a withdrawal of savings may be required (Emanuel, Fairclough, Slutsman, & Emanuel, 2000). Insurance and payment restrictions also may disqualify families from receiving more formal social services. "
ABSTRACT: Bridging the health care gap for community-dwelling older adults with chronic illnesses is vital. Interviews with 12 religious leaders explored perceived barriers and potential benefits in partnering with a secular organization to provide such care. Interviews were audiotaped and transcribed verbatim for content analysis. Themes identified as barriers included difficulty identifying “chronic illness” and awareness of need, volunteer over-commitment, proselytizing concerns, and financial obligations. Themes identified as benefits included the possibility of partnering with a secular organization to broker services, community views of churches as centralized assistance “clearinghouses,” a history of church collaboration, and creation of community cohesion. While faith-based organizations were interested in partnering to provide services, such partnerships must be developed within local community organizations in a position to broker services to those in need.Clinical Gerontologist 05/2011; 34(3-3):237-250. DOI:10.1080/07317115.2011.554344 · 0.66 Impact Factor