- Email: [email protected]
Economic Burden Associated with Cancer Caregiving
Seminars in Oncology Nursing 35 (2019) 333 336
Contents lists available at ScienceDirect
Seminars in Oncology Nursing journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing
Economic Burden Associated with Cancer Caregiving Cathy J. Bradley, PhD* University of Colorado Cancer Center, and Colorado School of Public Health, Aurora, CO
A R T I C L E
I N F O
Key Words: caregiving cancer financial burden employment health insurance
Objective: The societal value of unpaid caregiving is estimated to exceed $470 billion annually. In spite of the high value care they provide, caregivers experience significant financial burden. This paper examines the sources and impact of financial burden on cancer caregivers. Data Sources: Survey of the published peer-reviewed literature complemented by Web-based sources. Conclusion: Caregivers for cancer patients may experience financial burden disproportionately relative to other caregivers because of the intensity of care they provide and the cost and complexity of cancer treatment. Financial burden stems from employment loss and cost of care and can continue long after the death of the patient. Few federal policy protections are available for caregivers. Implications for Nursing Practice: Oncology nurses can play an important role in recognizing the needs of caregivers and act as navigators to connect caregivers to available resources. © 2019 Elsevier Inc. All rights reserved.
With the growing cancer survivor population and the shift to targeted therapies that continue until evidence of disease progression, informal caregivers of cancer patients are in great demand as adjuvants to the formal system. Although caregivers provide high-value care (valued at over $470 billion/year in 2013),1 the economic consequences they bear in doing so are substantial. For example, working-age caregivers face the challenge of meeting work demands while pursuing professional goals and caring for their loved one. Demands of employment cannot be ignored because employment is essential for family income and/or employment-based health insurance coverage. In addition, the cost of cancer care has risen more rapidly than other medical sectors,2 as has the out-of-pocket and copays that may lead to serious economic consequences for families. In a national survey, approximately one quarter of families who experienced a cancer death within the last year reported that the cost of care was a major financial burden; a third used all or most of their savings to cover the costs'.3 This article describes the economic challenges associated with cancer caregiving, including: employment loss; out-of-pocket costs; potential loss of insurance; federal policies and protections; and possible options available to caregivers (see Table 1). This article concludes with a description of how the oncology care team, oncology nurses in particular, can assist cancer caregivers in avoiding serious and long-term economic consequences.
Employment and Health Insurance Loss of employment and absenteeism can lead to significant financial burden. In many instances, caregivers may be primary wage earners, This work was supported by the National Cancer Institute (grant no. P30CA046934). * Address correspondence to: Cathy J. Bradley, PhD, University of Colorado at Denver, 13001 E. 17th Place, B119, Bldg. 500, Rm N6203L, Aurora, CO 80045. E-mail address: [email protected] https://doi.org/10.1016/j.soncn.2019.06.003 0749-2081/© 2019 Elsevier Inc. All rights reserved.
hold the insurance policies, as well as be responsible for other duties at home and work. Even if caregivers are secondary wage earners, their employment may become all the more important for financial viability while their loved one is undergoing treatment. Estimates of the impact on caregivers’ employment vary considerably by whether the patient is an adult or child, type of cancer the patient has, the stage of diagnosis, and long-term prognosis for the patient. Regardless of these factors, nearly all caregivers lose some time from work while caring for a cancer patient. Caregivers’ loss of employment has been studied less than patient employment loss, but the available body of literature outlines how caregivers’ employment may be affected. For example, over two thirds of employed caregivers of women with breast cancer reported an adverse impact on work and approximately three quarters of caregivers caring for terminally ill women reported missing time from work.4 In a study of caregivers of patients diagnosed with bladder, breast, colorectal, kidney, lung, melanoma of the skin, ovarian, prostate, or uterine cancer, or non Hodgkin’s lymphoma, 74% of caregivers were employed. Yet, they reported providing approximately 8 hours of care a day for nearly 14 months with the greatest intensity of care provided to patients with regional or distant stage disease, extending caregiver time spent to caregiving to 15 to 18 months.5 Many patients eventually return to work within 5 years following diagnosis6,7 and their employed caregivers may follow a similar pattern, mirroring return to work and absenteeism of their patient. Alternatively, caregivers may compensate for the diminished capacity of their patient by working additional hours or accepting lower-paying jobs that will accommodate their caregiving schedules. Hollenbeak et al8 found that husbands of cancer survivors were slightly less likely to work than husbands of non-cancer survivors, but among husbands who continued to work, they worked 1.5 more hours per week than husbands of noncancer survivors. These choices lead to long-term health and economic
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C.J. Bradley / Seminars in Oncology Nursing 35 (2019) 333 336
Table 1 Potential impacts of caregiving on employment. Loss of employment Loss of employer-based health insurance and other benefits Loss of income; retirement savings, and employer contributions Time away from work (paid and unpaid) Reduced work productivity Working extra hours to compensate for patient’s inability to work and/or loss of income and health insurance or other benefits Accepting lower paying jobs to accommodate schedule
consequences for patients and caregivers and ultimately, for society, making a case for increased government and societal support for caregivers. Employment loss may be intensified for parents of children with cancer. Nearly all parents of children with cancer report work disruptions and nearly half report that at least one parent quit a job because of the child’s illness,9,10 amounting to a loss of over 25% of a family’s total income.11 Periods of unemployment last for about 1 to 5 years from diagnosis, but the long-term impact on families’ economic well-being is not understood.9 It is plausible that parents do not make up for earnings loss or return to jobs with the same level of opportunity as the job they left as a consequence of caregiving. In countries outside the United States, families report increased reliance on social assistance and insurance for supplemental income.9 Such social and government-supported safety nets are rare in the United States, leaving American families with few alternative sources for income or insurance without employment in a full-time job position that offers benefits. In spite of the overwhelming burden associated with caregiving, some caregivers are reluctant to quit work or reduce hours worked to maintain employer-based health insurance,12 leaving their loved one in the care of friends, family, and/or paid help. The shift in treatment to the outpatient and home setting may provide a relief for caregivers and allow them to devote time to work. Alternatively, the shift in care delivery to the outpatient or home setting may place all of the burden on caregivers for medication management and side-effect control. Treatments administered outpatient or at home are significantly more costly than conventional therapies and few alternatives for health insurance comparable to employment-based policies exist in the United States, putting additional pressure on caregivers to not only maintain employment but work nearly full time to qualify for benefits. As discussed in the following section, out-of-pocket expenses for cancer care are considerable and require substantial resources in addition to generous health insurance coverage, suggesting that caregivers will be required to maintain health insurance for themselves and the patient well into the survivorship period. Out-of-Pocket Expenses The financial burden of cancer is well documented in the scientific literature13 16 as well as the popular press.17 Per-person direct medical expenditures are the highest for cancer relative to other diseases18 and are expected to rise by 40% between 2010 and 2020.19 Among elderly Medicare-insured cancer patients, annual out-of-pocket spending ranged between approximately $2,000 to over $8,000 depending on whether the patient had supplemental insurance and the type of insurance they had.14 For some patients, these costs exceed $10,000 a year, much of which is attributable to patient responsibility for inpatient care.14 Other evidence suggests that costs may also shift to outpatient care as the use of high-cost antineoplastic agents become more common.20 Non-elderly patients without Medicare insurance may experience even greater financial burden given the prevalence of high-deductible plans and high copays. Approximately 13% of non-elderly cancer patients spend more than 20% of their income on health care and premiums compared with 9.7% of adults with other chronic conditions and only 4% among those without chronic conditions.13 As a result, many of these patients do not take recommended treatments as
prescribed,21 potentially increasing their chances for toxicity without receiving a benefit from the drug. The experience of financial burden is associated with high levels of patient anxiety and depression15 and possibly lower mortality.22 A cancer diagnosis is associated with a 2.65 greater likelihood of personal bankruptcy; among those who declare bankruptcy,23 mortality is higher.24 Like their patients, caregivers experience symptoms associated with financial burden and many continue to experience the impact of financial burden long after the patient’s death, especially if they incurred debt or declared bankruptcy. Ferrell and Kravitz25 developed and tested an intervention for financially strained caregivers and offered guidelines for supporting and improving the wellbeing of these caregivers. Prior to the intervention, these caregivers were more distressed and less likely to participate in self-care relative to other caregivers.25 Oncology care providers need to recognize that financial burden extends beyond the patient and affects the caregiver, who may have greater awareness of the costs of care than the patient and may feel greater responsibility for meeting the financial responsibility of cancer care. These caregivers may be reluctant to speak about treatment costs in front of the patient and instead, sacrifice their own health and financial well-being to try to meet the financial demands placed upon them. Federal Protections The threat of employment loss, potential loss of insurance, and exorbitant out-of-pocket costs leave cancer patients and their caregivers vulnerable. Legal protections and insurance options available to cancer patients sometimes extend to caregivers. Although states differ in their provision of protections of caregivers against job loss, the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA) are the two main federal policies that offer workplace protections to caregivers, if they are qualified. Employers cannot discriminate against a caregiver caring for an ill family member, but they do not have to offer reasonable accommodations such as time off or a schedule change as employers must do with a disabled employee. Furthermore, the ADA only applies to employers with more than 50 employees and employees who meet tenure requirements. The FMLA does not apply to employers with 25 or fewer employees. The FMLA protects employees with caregiving responsibilities for a family member to take unpaid leave for a period of 12 weeks and return to their job if they meet the specific criteria for hours worked and tenure. Limited health insurance coverage protection is offered under the Consolidated Omnibus Budget Reconciliation Act health benefit provisions of 1986 (COBRA). COBRA allows employees to purchase employer-based health insurance coverage for a period of up to 18 months following employment termination, but former employees pay the full cost of coverage. The Affordable Care Act (ACA) adopted by many states also allows the purchase of health insurance policies on the exchange market, but costs vary depending on whether the employee qualifies for a subsidy. Unfortunately, many caregivers are employed in the growing number of jobs such as multiple part-time jobs, contract work, and employment in small businesses where no protections exist. Federal- and state-level policies are needed to ensure caregivers have adequate sick leave and ongoing health insurance. Vulnerable Populations Every aspect of economic burden for caregivers described thus far are exacerbated among those with low socioeconomic status. Racial and ethnic minority patients and low-income patients are most vulnerable to financial and employment loss relative to their wealthier and white counterparts.26 28 Caregivers to these patients are also more likely to experience disparate economic consequences and, given the symbiotic relationship between patients and caregivers, it
C.J. Bradley / Seminars in Oncology Nursing 35 (2019) 333 336
is likely that caregivers experience similar circumstances as patients when they return to work or try to maintain employment while caregiving. Further complicating matters, caregivers with less than a high school education or with a family income below $20,000 a year spend more hours per day caregiving than those who are more educated or have higher incomes,5 suggesting that low socioeconomic caregivers may be caring for patients who are sicker and/or they have fewer resources to spend on hired help. Low-income families with children with cancer report losing more than 40% of their annual income10 and many low-income families of children with cancer report falling below the poverty line following a child’s death.29 These family caregivers are also more vulnerable to loss of health insurance, either through the loss of their own employment or loss of the patients’ employment. Although the passage of the ACA reduced the number of uninsured persons and improved financial well-being among those previously insured,30 many working poor individuals remain uninsured and ineligible for public insurance, particularly in states that did not expand their Medicaid programs. Additional attention and care are required for low socioeconomic status caregivers. They experience the greatest burden, have the fewest resources, and may be the most likely to sacrifice their own health and what little financial security they have for their patient. Role of Nurses and the Oncology Care Team Caregivers require emotional, social, educational, and physical support while caring for a patient. They are also likely to require financial advice and career services. Caregivers in low socioeconomic situations are likely to feel the greatest economic consequences. The oncology care team can play a pivotal role in helping caregivers get at least some of the employment and financial support they need. Members of the oncology care team can communicate to employers and validate caregivers’ need for time away from work. Oncology nurses, in particular, can help caregivers identify and anticipate work-related needs at the beginning of caregiving when proactive communication and accommodations may help to avoid future problems. Nurses spend the most time with patients and their caregivers and may be in the best position to lessen the overall financial impact on caregivers by acting as navigators for workplace pitfalls and raising awareness about out-of-pocket costs. Nurses may also be in position to recognize when caregivers are struggling and direct them to the services they need. The evidence suggests that as pressures mount, caregivers experience considerable anxiety and depression and physical health consequences.4 These pressures may worsen as the caregiving period is extended until disease progression and with the outpatient and home setting as the primary location of health care delivery. Alternatively, new therapies, in spite of their costs, may reduce caregiver burden by allowing patients to return to work and/or experience fewer side effects. Oncology nurses, who have the greatest patient and caregiver contact, are in a unique position to gauge caregiver burden and must be cognizant of employment loss and other financial concerns that caregivers may experience and direct them to the resources they require (see Table 2). Given the paucity of resources available, particularly in the United States, more interventions are needed to help alleviate economic burden among caregivers. Future Directions The annual cost of cancer caregiving was estimated as $14,000 in 2010.31 This estimate does not reflect recent trends in treatment and the use of high-cost antineoplastic agents and their supportive medications, or the current structure of insurance plans with high deductibles and greater out-of-pocket costs for patients and their families. Therefore, in the past decade, out-of-pocket costs may have risen considerably. In addition, estimates of caregivers’ economic burden does not reflect that a greater proportion of workers are employed through contract
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Table 2 Implications for nursing. Guide caregiver to communicate with employers about need for time away from work and to be aware of leave policies including the Family Medical Leave Act (FMLA) Help caregivers identify and anticipate work-related needs Act as navigators for caregiver to avoid workplace pitfalls Raise awareness about out-of-pocket costs Recognize when caregivers are struggling Direct caregivers to the employment, legal, and financial services and resources they need Be cognizant of caregiver employment loss and other financial concerns and the impact on caregiver’s physical and emotional well-being
arrangements, multiple part-time jobs, or by smaller employers - none of which provide employed caregivers the protections offered to those employed by larger employers.32 In spite of caregivers reporting that their commitment to the patient is more important than their own employment or health concerns,4 they may feel more deeply torn between being a financial provider given the rising costs and potential loss of health insurance. Under this scenario, caregivers may have less time to spend with patients and may be unable to provide appropriate types and quality of care needed for patients to benefit fully from treatment. There are several pathways forward for oncology nurses to support caregivers with economic concerns. The first is the use of technology or other methods to tailor existing caregiver interventions to caregivers who may be working and have little time to participate in counseling and other forms of psychosocial support. These approaches may involve Web-based methods, telehealth, or other means to accommodate caregivers, particularly those who are employed. The second is to inquire about caregiver challenges at work. Oncology nurses may be able to help caregivers navigate these challenges by providing them with documentation that will facilitate necessary leave or educate caregivers about available protections. The third is to be cognizant of a struggling caregiver and recognize that some of their problems may stem from financial concerns and to put caregivers whenever possible in touch with financial counselors or other professionals within the health care system that may be able to offer services. Finally, the economic burden for caregivers is an issue for society. In absence of sweeping policies that offer sick leave and affordable care, the oncology care team and researchers need to work together to develop interventions or modify existing interventions to include a financial component. References 1. Family Caregiver Alliance. Caregiver statistics: Demographics. 2016. Available at: https://www.caregiver.org/caregiver-statistics-demographics. (Accessed February 20, 2019). 2. Demko P. Health care spending again accelerating. Politico. 2015. Available at: https://www.politico.com/story/2015/07/health-care-spending-hike-prediction120740. Accessed 20 February 2019. 3. Cagle JG, Carr DC, Hong S, Zimmerman S. Financial burden among US households affected by cancer at the end of life. Psychooncology. 2016;25:919–926. 4. Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004;170:1795–1801. 5. Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115:4362–4373. 6. Bednarek HL, Bradley CJ. Work and retirement after cancer diagnosis. Res Nurs Health. 2005;28:126–135. 7. Farley Short P, Vasey JJ, Moran JR. Long-term effects of cancer survivorship on the employment of older workers. Health Serv Res. 2008;43:193–210. 8. Hollenbeak CS, Short PF, Moran J. The implications of cancer survivorship for spousal employment. J Cancer Surviv. 2011;5:226–234. 9. Limburg H, Shaw AK, McBride ML. Impact of childhood cancer on parental employment and sources of income: a Canadian pilot study. Pediatr Blood Cancer. 2008;51:93–98. 10. Bona K, Dussel V, Orellana L, et al. Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage. 2014;47:594–603. 11. Barr R, Furlong W, Horsman J, Feeny D, Torrance G, Weitzman S. The monetary costs of childhood cancer to the families of patients. Int J Oncol. 1996;8:933–940. 12. Bradley CJ, Dahman B. Time away from work: Employed husbands of women treated for breast cancer. J Cancer Surviv. 2013;7:227–236.
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13. Bernard DS, Farr SL, Fang Z. National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol. 2011;29:2821–2826. 14. Narang AK, Nicholas LH. Out-of-pocket spending and financial burden among Medicare beneficiaries with cancer. JAMA Oncol. 2017;3:757–765. 15. Kale HP, Carroll NV. Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors. Cancer. 2016;122:283–289. 16. Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: A pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist. 2013;18:381–390. 17. Bach PB, Saltz LB, Wittes R. In cancer care, cost matters. The New York Times; October 14, 2012. Available at; https://www.canceradvocacy.org/wp-content/ uploads/2013/10/Cost-of-Care-P-Back-L-Saltz-and-R-Wittes.pdf. Accessed 7 February 2019. 18. Soni A. Statistical brief #331: Top 10 most costly conditions among men and women, 2008: Estimates for the U.S. civilian noninstitutionalized adult population, age 18 and older. July 2011. Available at: https://meps.ahrq.gov/data_files/publica tions/st331/stat331.shtml, (Accessed February 20, 2019). 19. Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML. Projections of the cost of cancer care in the United States: 2010-2020. J Natl Cancer Inst. 2011;103:117–128. 20. Bradley CJ, Yabroff KR, Mariotto AB, Zeruto C, Tran Q, Warren JL. Antineoplastic treatment of advanced-stage non-small-cell lung cancer: Treatment, survival, and spending (2000 to 2011). J Clin Oncol. 2017;35:529–535. 21. Zheng Z, Han X, Guy Jr. GP, et al. Do cancer survivors change their prescription drug use for financial reasons? Findings from a nationally representative sample in the United States. Cancer. 2017;123:1453–1463. 22. Zafar SY. Financial toxicity of cancer care: It’s time to intervene. J Natl Cancer Inst. 2015;108:djv370.
23. Ghatak N, Trehan A, Bansal D. Financial burden of therapy in families with a child with acute lymphoblastic leukemia: Report from north India. Support Care Cancer. 2016;24:103–108. 24. Tucker-Seeley RD, Li Y, Subramanian SV, Sorensen G. Financial hardship and mortality among older adults using the 1996-2004 Health and Retirement Study. Ann Epidemiol. 2009;19:850–857. 25. Ferrell BR, Kravitz K. Cancer care: Supporting underserved and financially burdened family caregivers. J Adv Pract Oncol. 2017;8:494–500. 26. Bradley CJ. The need for online information on the economic consequences of cancer diagnosis, treatment, and survivorship. J Med Internet Res. 2005;7:e29. 27. Jagsi R, Pottow JAE, Griffith KA, et al. Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries. J Clin Oncol. 2014;32:1269–1276. 28. Blinder V, Eberle C, Patil S, Gany FM, Bradley CJ. Women with breast cancer who work for accommodating employers more likely to retain jobs after treatment. Health Aff (Millwood). 2017;36:274–281. 29. Dussel V, Bona K, Heath JA, Hilden JM, Weeks JC, Wolfe J. Unmeasured costs of a child’s death: Perceived financial burden, work disruptions, and economic coping strategies used by Amecan and Australian families who lost children to cancer. J Clin Oncol. 2011;29:1007–1013. 30. Hu L, Kaestner R, Mazumder B, Miller S, Wong A. The effect of the Affordable Care Act Medicaid expansions on financial wellbeing. J Public Econ. 2018;163:99–112. https://doi.org/10.1016/j.jpubeco.2018.04.009. 31. Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M. Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist. 2010;15:883–893. 32. Bradley CJ, Neumark D, Walker LS. The effect of primary care visits on other health care utilization: a randomized controlled trial of cash incentives offered to low income, uninsured adults in Virginia. J Health Econ. 2018;62:121–133.
Contents lists available at ScienceDirect
Seminars in Oncology Nursing journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing
Economic Burden Associated with Cancer Caregiving Cathy J. Bradley, PhD* University of Colorado Cancer Center, and Colorado School of Public Health, Aurora, CO
A R T I C L E
I N F O
Key Words: caregiving cancer financial burden employment health insurance
Objective: The societal value of unpaid caregiving is estimated to exceed $470 billion annually. In spite of the high value care they provide, caregivers experience significant financial burden. This paper examines the sources and impact of financial burden on cancer caregivers. Data Sources: Survey of the published peer-reviewed literature complemented by Web-based sources. Conclusion: Caregivers for cancer patients may experience financial burden disproportionately relative to other caregivers because of the intensity of care they provide and the cost and complexity of cancer treatment. Financial burden stems from employment loss and cost of care and can continue long after the death of the patient. Few federal policy protections are available for caregivers. Implications for Nursing Practice: Oncology nurses can play an important role in recognizing the needs of caregivers and act as navigators to connect caregivers to available resources. © 2019 Elsevier Inc. All rights reserved.
With the growing cancer survivor population and the shift to targeted therapies that continue until evidence of disease progression, informal caregivers of cancer patients are in great demand as adjuvants to the formal system. Although caregivers provide high-value care (valued at over $470 billion/year in 2013),1 the economic consequences they bear in doing so are substantial. For example, working-age caregivers face the challenge of meeting work demands while pursuing professional goals and caring for their loved one. Demands of employment cannot be ignored because employment is essential for family income and/or employment-based health insurance coverage. In addition, the cost of cancer care has risen more rapidly than other medical sectors,2 as has the out-of-pocket and copays that may lead to serious economic consequences for families. In a national survey, approximately one quarter of families who experienced a cancer death within the last year reported that the cost of care was a major financial burden; a third used all or most of their savings to cover the costs'.3 This article describes the economic challenges associated with cancer caregiving, including: employment loss; out-of-pocket costs; potential loss of insurance; federal policies and protections; and possible options available to caregivers (see Table 1). This article concludes with a description of how the oncology care team, oncology nurses in particular, can assist cancer caregivers in avoiding serious and long-term economic consequences.
Employment and Health Insurance Loss of employment and absenteeism can lead to significant financial burden. In many instances, caregivers may be primary wage earners, This work was supported by the National Cancer Institute (grant no. P30CA046934). * Address correspondence to: Cathy J. Bradley, PhD, University of Colorado at Denver, 13001 E. 17th Place, B119, Bldg. 500, Rm N6203L, Aurora, CO 80045. E-mail address: [email protected] https://doi.org/10.1016/j.soncn.2019.06.003 0749-2081/© 2019 Elsevier Inc. All rights reserved.
hold the insurance policies, as well as be responsible for other duties at home and work. Even if caregivers are secondary wage earners, their employment may become all the more important for financial viability while their loved one is undergoing treatment. Estimates of the impact on caregivers’ employment vary considerably by whether the patient is an adult or child, type of cancer the patient has, the stage of diagnosis, and long-term prognosis for the patient. Regardless of these factors, nearly all caregivers lose some time from work while caring for a cancer patient. Caregivers’ loss of employment has been studied less than patient employment loss, but the available body of literature outlines how caregivers’ employment may be affected. For example, over two thirds of employed caregivers of women with breast cancer reported an adverse impact on work and approximately three quarters of caregivers caring for terminally ill women reported missing time from work.4 In a study of caregivers of patients diagnosed with bladder, breast, colorectal, kidney, lung, melanoma of the skin, ovarian, prostate, or uterine cancer, or non Hodgkin’s lymphoma, 74% of caregivers were employed. Yet, they reported providing approximately 8 hours of care a day for nearly 14 months with the greatest intensity of care provided to patients with regional or distant stage disease, extending caregiver time spent to caregiving to 15 to 18 months.5 Many patients eventually return to work within 5 years following diagnosis6,7 and their employed caregivers may follow a similar pattern, mirroring return to work and absenteeism of their patient. Alternatively, caregivers may compensate for the diminished capacity of their patient by working additional hours or accepting lower-paying jobs that will accommodate their caregiving schedules. Hollenbeak et al8 found that husbands of cancer survivors were slightly less likely to work than husbands of non-cancer survivors, but among husbands who continued to work, they worked 1.5 more hours per week than husbands of noncancer survivors. These choices lead to long-term health and economic
334
C.J. Bradley / Seminars in Oncology Nursing 35 (2019) 333 336
Table 1 Potential impacts of caregiving on employment. Loss of employment Loss of employer-based health insurance and other benefits Loss of income; retirement savings, and employer contributions Time away from work (paid and unpaid) Reduced work productivity Working extra hours to compensate for patient’s inability to work and/or loss of income and health insurance or other benefits Accepting lower paying jobs to accommodate schedule
consequences for patients and caregivers and ultimately, for society, making a case for increased government and societal support for caregivers. Employment loss may be intensified for parents of children with cancer. Nearly all parents of children with cancer report work disruptions and nearly half report that at least one parent quit a job because of the child’s illness,9,10 amounting to a loss of over 25% of a family’s total income.11 Periods of unemployment last for about 1 to 5 years from diagnosis, but the long-term impact on families’ economic well-being is not understood.9 It is plausible that parents do not make up for earnings loss or return to jobs with the same level of opportunity as the job they left as a consequence of caregiving. In countries outside the United States, families report increased reliance on social assistance and insurance for supplemental income.9 Such social and government-supported safety nets are rare in the United States, leaving American families with few alternative sources for income or insurance without employment in a full-time job position that offers benefits. In spite of the overwhelming burden associated with caregiving, some caregivers are reluctant to quit work or reduce hours worked to maintain employer-based health insurance,12 leaving their loved one in the care of friends, family, and/or paid help. The shift in treatment to the outpatient and home setting may provide a relief for caregivers and allow them to devote time to work. Alternatively, the shift in care delivery to the outpatient or home setting may place all of the burden on caregivers for medication management and side-effect control. Treatments administered outpatient or at home are significantly more costly than conventional therapies and few alternatives for health insurance comparable to employment-based policies exist in the United States, putting additional pressure on caregivers to not only maintain employment but work nearly full time to qualify for benefits. As discussed in the following section, out-of-pocket expenses for cancer care are considerable and require substantial resources in addition to generous health insurance coverage, suggesting that caregivers will be required to maintain health insurance for themselves and the patient well into the survivorship period. Out-of-Pocket Expenses The financial burden of cancer is well documented in the scientific literature13 16 as well as the popular press.17 Per-person direct medical expenditures are the highest for cancer relative to other diseases18 and are expected to rise by 40% between 2010 and 2020.19 Among elderly Medicare-insured cancer patients, annual out-of-pocket spending ranged between approximately $2,000 to over $8,000 depending on whether the patient had supplemental insurance and the type of insurance they had.14 For some patients, these costs exceed $10,000 a year, much of which is attributable to patient responsibility for inpatient care.14 Other evidence suggests that costs may also shift to outpatient care as the use of high-cost antineoplastic agents become more common.20 Non-elderly patients without Medicare insurance may experience even greater financial burden given the prevalence of high-deductible plans and high copays. Approximately 13% of non-elderly cancer patients spend more than 20% of their income on health care and premiums compared with 9.7% of adults with other chronic conditions and only 4% among those without chronic conditions.13 As a result, many of these patients do not take recommended treatments as
prescribed,21 potentially increasing their chances for toxicity without receiving a benefit from the drug. The experience of financial burden is associated with high levels of patient anxiety and depression15 and possibly lower mortality.22 A cancer diagnosis is associated with a 2.65 greater likelihood of personal bankruptcy; among those who declare bankruptcy,23 mortality is higher.24 Like their patients, caregivers experience symptoms associated with financial burden and many continue to experience the impact of financial burden long after the patient’s death, especially if they incurred debt or declared bankruptcy. Ferrell and Kravitz25 developed and tested an intervention for financially strained caregivers and offered guidelines for supporting and improving the wellbeing of these caregivers. Prior to the intervention, these caregivers were more distressed and less likely to participate in self-care relative to other caregivers.25 Oncology care providers need to recognize that financial burden extends beyond the patient and affects the caregiver, who may have greater awareness of the costs of care than the patient and may feel greater responsibility for meeting the financial responsibility of cancer care. These caregivers may be reluctant to speak about treatment costs in front of the patient and instead, sacrifice their own health and financial well-being to try to meet the financial demands placed upon them. Federal Protections The threat of employment loss, potential loss of insurance, and exorbitant out-of-pocket costs leave cancer patients and their caregivers vulnerable. Legal protections and insurance options available to cancer patients sometimes extend to caregivers. Although states differ in their provision of protections of caregivers against job loss, the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA) are the two main federal policies that offer workplace protections to caregivers, if they are qualified. Employers cannot discriminate against a caregiver caring for an ill family member, but they do not have to offer reasonable accommodations such as time off or a schedule change as employers must do with a disabled employee. Furthermore, the ADA only applies to employers with more than 50 employees and employees who meet tenure requirements. The FMLA does not apply to employers with 25 or fewer employees. The FMLA protects employees with caregiving responsibilities for a family member to take unpaid leave for a period of 12 weeks and return to their job if they meet the specific criteria for hours worked and tenure. Limited health insurance coverage protection is offered under the Consolidated Omnibus Budget Reconciliation Act health benefit provisions of 1986 (COBRA). COBRA allows employees to purchase employer-based health insurance coverage for a period of up to 18 months following employment termination, but former employees pay the full cost of coverage. The Affordable Care Act (ACA) adopted by many states also allows the purchase of health insurance policies on the exchange market, but costs vary depending on whether the employee qualifies for a subsidy. Unfortunately, many caregivers are employed in the growing number of jobs such as multiple part-time jobs, contract work, and employment in small businesses where no protections exist. Federal- and state-level policies are needed to ensure caregivers have adequate sick leave and ongoing health insurance. Vulnerable Populations Every aspect of economic burden for caregivers described thus far are exacerbated among those with low socioeconomic status. Racial and ethnic minority patients and low-income patients are most vulnerable to financial and employment loss relative to their wealthier and white counterparts.26 28 Caregivers to these patients are also more likely to experience disparate economic consequences and, given the symbiotic relationship between patients and caregivers, it
C.J. Bradley / Seminars in Oncology Nursing 35 (2019) 333 336
is likely that caregivers experience similar circumstances as patients when they return to work or try to maintain employment while caregiving. Further complicating matters, caregivers with less than a high school education or with a family income below $20,000 a year spend more hours per day caregiving than those who are more educated or have higher incomes,5 suggesting that low socioeconomic caregivers may be caring for patients who are sicker and/or they have fewer resources to spend on hired help. Low-income families with children with cancer report losing more than 40% of their annual income10 and many low-income families of children with cancer report falling below the poverty line following a child’s death.29 These family caregivers are also more vulnerable to loss of health insurance, either through the loss of their own employment or loss of the patients’ employment. Although the passage of the ACA reduced the number of uninsured persons and improved financial well-being among those previously insured,30 many working poor individuals remain uninsured and ineligible for public insurance, particularly in states that did not expand their Medicaid programs. Additional attention and care are required for low socioeconomic status caregivers. They experience the greatest burden, have the fewest resources, and may be the most likely to sacrifice their own health and what little financial security they have for their patient. Role of Nurses and the Oncology Care Team Caregivers require emotional, social, educational, and physical support while caring for a patient. They are also likely to require financial advice and career services. Caregivers in low socioeconomic situations are likely to feel the greatest economic consequences. The oncology care team can play a pivotal role in helping caregivers get at least some of the employment and financial support they need. Members of the oncology care team can communicate to employers and validate caregivers’ need for time away from work. Oncology nurses, in particular, can help caregivers identify and anticipate work-related needs at the beginning of caregiving when proactive communication and accommodations may help to avoid future problems. Nurses spend the most time with patients and their caregivers and may be in the best position to lessen the overall financial impact on caregivers by acting as navigators for workplace pitfalls and raising awareness about out-of-pocket costs. Nurses may also be in position to recognize when caregivers are struggling and direct them to the services they need. The evidence suggests that as pressures mount, caregivers experience considerable anxiety and depression and physical health consequences.4 These pressures may worsen as the caregiving period is extended until disease progression and with the outpatient and home setting as the primary location of health care delivery. Alternatively, new therapies, in spite of their costs, may reduce caregiver burden by allowing patients to return to work and/or experience fewer side effects. Oncology nurses, who have the greatest patient and caregiver contact, are in a unique position to gauge caregiver burden and must be cognizant of employment loss and other financial concerns that caregivers may experience and direct them to the resources they require (see Table 2). Given the paucity of resources available, particularly in the United States, more interventions are needed to help alleviate economic burden among caregivers. Future Directions The annual cost of cancer caregiving was estimated as $14,000 in 2010.31 This estimate does not reflect recent trends in treatment and the use of high-cost antineoplastic agents and their supportive medications, or the current structure of insurance plans with high deductibles and greater out-of-pocket costs for patients and their families. Therefore, in the past decade, out-of-pocket costs may have risen considerably. In addition, estimates of caregivers’ economic burden does not reflect that a greater proportion of workers are employed through contract
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Table 2 Implications for nursing. Guide caregiver to communicate with employers about need for time away from work and to be aware of leave policies including the Family Medical Leave Act (FMLA) Help caregivers identify and anticipate work-related needs Act as navigators for caregiver to avoid workplace pitfalls Raise awareness about out-of-pocket costs Recognize when caregivers are struggling Direct caregivers to the employment, legal, and financial services and resources they need Be cognizant of caregiver employment loss and other financial concerns and the impact on caregiver’s physical and emotional well-being
arrangements, multiple part-time jobs, or by smaller employers - none of which provide employed caregivers the protections offered to those employed by larger employers.32 In spite of caregivers reporting that their commitment to the patient is more important than their own employment or health concerns,4 they may feel more deeply torn between being a financial provider given the rising costs and potential loss of health insurance. Under this scenario, caregivers may have less time to spend with patients and may be unable to provide appropriate types and quality of care needed for patients to benefit fully from treatment. There are several pathways forward for oncology nurses to support caregivers with economic concerns. The first is the use of technology or other methods to tailor existing caregiver interventions to caregivers who may be working and have little time to participate in counseling and other forms of psychosocial support. These approaches may involve Web-based methods, telehealth, or other means to accommodate caregivers, particularly those who are employed. The second is to inquire about caregiver challenges at work. Oncology nurses may be able to help caregivers navigate these challenges by providing them with documentation that will facilitate necessary leave or educate caregivers about available protections. The third is to be cognizant of a struggling caregiver and recognize that some of their problems may stem from financial concerns and to put caregivers whenever possible in touch with financial counselors or other professionals within the health care system that may be able to offer services. Finally, the economic burden for caregivers is an issue for society. In absence of sweeping policies that offer sick leave and affordable care, the oncology care team and researchers need to work together to develop interventions or modify existing interventions to include a financial component. References 1. Family Caregiver Alliance. Caregiver statistics: Demographics. 2016. Available at: https://www.caregiver.org/caregiver-statistics-demographics. (Accessed February 20, 2019). 2. Demko P. Health care spending again accelerating. Politico. 2015. Available at: https://www.politico.com/story/2015/07/health-care-spending-hike-prediction120740. Accessed 20 February 2019. 3. Cagle JG, Carr DC, Hong S, Zimmerman S. Financial burden among US households affected by cancer at the end of life. Psychooncology. 2016;25:919–926. 4. Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004;170:1795–1801. 5. Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115:4362–4373. 6. Bednarek HL, Bradley CJ. Work and retirement after cancer diagnosis. Res Nurs Health. 2005;28:126–135. 7. Farley Short P, Vasey JJ, Moran JR. Long-term effects of cancer survivorship on the employment of older workers. Health Serv Res. 2008;43:193–210. 8. Hollenbeak CS, Short PF, Moran J. The implications of cancer survivorship for spousal employment. J Cancer Surviv. 2011;5:226–234. 9. Limburg H, Shaw AK, McBride ML. Impact of childhood cancer on parental employment and sources of income: a Canadian pilot study. Pediatr Blood Cancer. 2008;51:93–98. 10. Bona K, Dussel V, Orellana L, et al. Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage. 2014;47:594–603. 11. Barr R, Furlong W, Horsman J, Feeny D, Torrance G, Weitzman S. The monetary costs of childhood cancer to the families of patients. Int J Oncol. 1996;8:933–940. 12. Bradley CJ, Dahman B. Time away from work: Employed husbands of women treated for breast cancer. J Cancer Surviv. 2013;7:227–236.
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