Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers

Johns Hopkins University, Baltimore, Maryland, United States
Annals of internal medicine (Impact Factor: 17.81). 03/2000; 132(6):451-9.
Source: PubMed


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.

64 Reads
  • Source
    • "The major benefit categories (as shown in the online additional material) include domains that range from cancer treatments with management of treatment complications, to preservation of function, psychosocial support, logistical support, and financial support. The benefit categories offered as choices to participants were selected based upon published data about the health care needs of people with advanced life-limiting illness [9,10]. In addition, some of the benefits choices are not currently covered by Medicare: unrestricted cash that may not typically be viewed as a benefit in such a health care program, concurrent palliative care where expansive palliative services could be accessed without un-electing curative treatments as now required in the current Medicare hospice benefit, and in-home custodial long term care services to address disability. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Background Concerns about unsustainable costs in the US Medicare program loom as the number of retirees increase and experiences serious and costly illnesses like cancer. Engagement of stakeholders, particularly cancer patients and their families, in prioritizing insured services offers a valuable strategy for informing Medicare coverage policy. We designed and evaluated a decision exercise that allowed cancer patients and family members to choose Medicare benefits for advanced cancer patients. Methods The decision tool, Choosing Health plans All Together (CHAT) was modified to select services for advanced cancer patients. Patients with a cancer history (N = 246) and their family members (N = 194) from North Carolina participated in 70 CHAT sessions. Variables including participants’ socio-demographic characteristics, health status, assessments of the exercise and results of group benefit selections were collected. Routine descriptive statistics summarized participant characteristics and Fisher’s exact test compared group differences. Qualitative analysis of group discussions were used to ascertain reasons for or against selecting benefits. Results Patients and family members (N = 440) participated in 70 CHAT exercises. Many groups opted for such services as palliative care, nursing facilities, and services not currently covered by the Medicare program. In choosing among four levels of cancer treatment coverage, no groups chose basic coverage, 27 groups (39%) selected intermediate coverage, 39 groups (56%) selected high coverage, and 4 groups (6%) chose the most comprehensive cancer coverage. Reasons for or against benefit selection included fairness, necessity, need for prioritizing, personal experience, attention to family needs, holistic health outlook, preference for comfort, freedom of choice, and beliefs about the proper role of government. Participants found the exercise very easy (59%) or fairly easy (39%) to understand and very informative (66%) or fairly informative (31%). The majority agreed that the CHAT exercise led to fair decisions about priorities for coverage by which they could abide. Conclusions It is possible to involve cancer patients and families in explicit discussions of their priorities for affordable advanced cancer care through the use of decision tools designed for this purpose. A key question is whether such a conversation is possible on a broader, national level.
    Full-text · Article · Jul 2014 · BMC Health Services Research
  • Source
    • "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. "
    [Show abstract] [Hide abstract]
    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.
    Full-text · Article · Feb 2013 · Medicine Health Care and Philosophy
  • Source
    • "These findings support previous study findings that caregivers' depression and patients' disability to perform their daily activities are highly related. Emanuel et al. have found that caregivers of terminally ill patients who needed a high amount of assistance (transportation, nursing care, homemaking, and personal care) were significantly more likely to have depressive symptoms than caregivers of patients with low care needs [48]. Similarly, patients' dependency in activities of daily living correlated with caregivers' depression symptoms [49]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Cancer is a major disorder physically and psychologically affecting both patients and their caregivers. In this study, health-related quality of life (HRQoL) of patient-caregiver dyads during the period of chemotherapy was assessed. Two hundred twenty-two cancer patient-caregiver dyads were enrolled in the study, which was conducted from October 2008 to March 2009. HRQoL was evaluated with EQ-5D. The mean age of the sample was 57.4 and 48.9 for patients and caregivers, respectively. The EQ-5D descriptive system indicates that female patients more frequently experience anxiety and depression than male patients. Male and higher-education caregivers had higher VAS scores, while demographic factors did not seem to influence patients' HRQoL. Anxiety and depression of caregivers were correlated with patients' problems in self-care and usual activities. Quality of life is highly influenced during the period of chemotherapy for both patients and caregivers and is often under reported. Interventions that can improve HRQoL, especially in the domain of mental health for both cancer patients and their caregivers, need to be implemented.
    Full-text · Article · Apr 2012 · The Scientific World Journal
Show more