Providing inbuilt economic resilience options

An obligation of comprehensive cancer care

Authors

  • Eva Reitschuler Cross MD,

    1. Department of Medicine, Mount Auburn Hospital, Cambridge, Massachusetts
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  • Linda Emanuel MD, PhD

    Corresponding author
    1. Department of Medicine, Buehler Center on Aging, Health, and Society, Northwestern University Feinberg School of Medicine, Chicago, Illinois
    • Department of Medicine, Buehler Center on Aging, Health and Society, Northwestern University Feinberg School of Medicine, 750 N. Lake Shore Drive, #601, Chicago, IL 60611
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    • Fax: (312) 503-5868


  • Sponsored by the National Cancer Institute's Office of Cancer Survivorship.

  • Presented at the Society of Behavioral Medicine preconference entitled “Cancer and Aging: Challenges and Opportunities across the Cancer Control Continuum,” Washington, DC, March 21, 2007.

Abstract

For many, a cancer death in the family is the immediately obvious part of what is actually a double devastation. Overwhelming financial damage also results for many families, from the cost of medical care and from the loss of earning power by the patient and family. For some families, the consequences may be multigenerational and can affect the health of the survivors. Although this situation is not limited to cancer, the authors argue that oncology can take a lead in attending to these consequences of cancer as an integral part of its commitment to comprehensive cancer care. They make this case for both the national and the international settings. They also articulate and illustrate the notion of inbuilt options for economic resilience (IERs), which the authors suggest the medical industry, and its cancer care sectors in particular, should be providing to all patients and their families if they are at risk for damaging financial losses. After describing key features to IER, the authors illustrate it with 1 type of approach for households of the terminally ill: hospice care with provision of supplementary training and certification to the family caregiver. Such programming could generate a low-technology, semiskilled healthcare service economy as trained family caregivers provide support to other households in need, thereby both providing a recovery option for themselves and reduced economic devastation to the households which, by receiving the services, can stay in the workforce. Finally, the authors call for invigorated research on the economic impact of cancer on families and for the modeling, demonstration, and study of options for economic resilience, including IER programs. Cancer 2008;113(12 suppl):3548–55. © 2008 American Cancer Society.

Cancer, like other illnesses that can cause death, brings with it an economic threat as well as a life threat. This article sets out the profound economic impacts of cancer and other chronic, potentially life-shortening illnesses, and argues that the medical profession in general and oncologists in particular have a core obligation to address this impact. It goes on to describe and call for development of an emerging concept for solutions to this problem, namely, programs that provide inbuilt economic resilience (IER) options for such patients and their families.

FINANCIAL IMPACT ON HOUSEHOLDS

Costs of Care and Lost Income

The economic impact of cancer on a patients' households starts with the onset of illness. In addition to reimbursable costs, families face out-of-pocket costs and they face lost income and lost opportunity when the patient or family caregiver (henceforth simply ‘caregiver’) lose workplace or education time.1, 2 Studies of costs related to cancer care are surprisingly few. Langa et al3 found that low-income cancer patients aged ≥70 years spent 27% of their income on out-of-pocket medical expenses. In a study of cancer outpatients, 69% had 1 or more pain management-related direct medical costs at an average cost just under $10,000 annually per patient, and 57% had cancer pain-related indirect costs (transportation, over-the-counter medication, etc) at an average of >$700 annually per patient.4 The average time spent on informal caregiving per cancer patient in the US is approximately 10 hours per week, or $1200 annually per patient.5

Medical expenditures reach a lifetime high for most individuals in the last months of life.6 In the US, 2 studies have highlighted some of the corresponding impact on the family household. The SUPPORT study of people with ≥1 among 9 life-shortening illnesses, including cancer, demonstrated that 55% of households withstood ≥1 major financial blows because of the illness, and in 12% a household member became ill or unable to function normally because of the illness stress. This was especially striking because 96% of the SUPPORT population had health insurance. The blow was disproportionate to households in which the patient was of wage-earning age: 43% of families of patients aged <45 years reported that most of their family savings were lost.7 Another study of patients with a prognosis of ≤6 months indicated that high caregiving needs were correlated with both economic burdens and health problems such as depression.8 Furthermore, data from the Health and Retirement Study (HRS) found no evidence that such households regained this lost income.9 Warren et al and Himmelstein et al showed that in approximately half of all cases, medical costs contributed to the debts of those who filed for bankruptcy and among these, 75.7% had insurance at the onset of the illness, and out-of-pocket costs averaged $11,854.10–12

In poor countries, the situation is even more pronounced, according to the Commission on Macroeconomics and Health, which made the case for investing in health as a means toward development.13 The World Health Organization (WHO) also recognizes disease as 1 of the primary challenges to reducing poverty.14 Local studies underscore the economic devastation of families of the terminally ill.15, 16 One study defines the burden of an illness as being catastrophic when its costs exceed 10% of a household's annual income.17 Although data on how cancer affects household finances is sparse, the high burden of cancer, which is expected to be the second leading cause of death worldwide by 2010, is estimated in disability–adjusted life–years (DALYs) in recognition of the impact of disability as well as early death on the overall burden.18, 19 For instance, in India, where approximately 80% of cancer patients present within a few months of death,20 families may face lost employment because of disability resulting from lack of cancer care, and when they do reach medical attention, spending may be rapid, leaving the family destitute in a matter of weeks or months.21

An Illness-Poverty Trap?

Poverty is correlated with ill health in many studies from many nations, including the US, and not least for cancer.9, 13, 22–26 Family caregivers have an increased risk of physical and mental health problems.8, 27 Scholars have described an “illness-poverty trap” in which illness causes poverty and poverty causes illness in a cycle that cannot easily be broken for generations.28 The Commission on Macroeconomics and Health notes that depletion of productive assets leads to an illness-poverty trap at the household level.13 Although empiric studies of illness poverty-traps and interventions to improve them are difficult,29 the illness-poverty trap has been modeled both for individual households and for populations.30–32 These models indicate persuasively how the cycles can take on an inevitability under certain circumstances, and underscore how lost education may have a particularly important role in a multigenerational illness-poverty trap. Empirical studies indicate that children in disease-affected families are less likely to remain in school.33–35

SOLUTIONS FROM THE PROFESSIONAL SECTOR: INBUILT ECONOMIC RESILIENCE OPTIONS

The Professional Obligation

The professional obligation to attend to the financial impact of illness and its care, including cancer and especially terminal phases of illness, is 4-fold. First, because economic vulnerability is linked to the mechanisms of illness and its treatment, economic devastation and the illness-poverty cycle are part of the impact of illness and a side effect of medical treatment; assessing and minimizing economic vulnerability because of illness therefore falls within the scope of what should be core medical expertise. Second, because a core part of the profession's values is to advocate for justice in matters of health, this must include righting economic imbalances caused by illness. Third, the options we describe below also use a core part of the medical profession's unique expertise, namely, medical training, that society has ‘contracted’ with the profession to use for the benefit of society. Finally, the medical industry has strong economic capacity and can afford to build in development programs. Not only clinicians but also healthcare executives and their institutions have this set of obligations that derive from the social contract; this is so because of the nature of the service provided, the obligations of clinicians who work in the system, the tax status of the service institutions (usually tax exempt), and the expectations of society. These same obligations undergird the specific commitment of the oncology community to comprehensive cancer care, and therefore we see there is valuable leadership that can come from oncologists to act by creating programs to minimize economic damage to cancer patients and their households.

The medical profession can respond to the obligation by advocating for or collaborating with government or private programs to provide options to mitigate economic damage due to illness.36, 37 This pathway of advocacy is conducted, for instance, through associations or provision of expert testimony to policy groups. These approaches are important and should be pursued, but are not sufficient. The profession should take what action it can on its own, consistent with its social mandate to use medical skills for the betterment of people affected by illness.

What Is an IER Option?

We propose that the healthcare industry explore the notion of IER options (ie, interventions by the medical profession that ameliorate the illness-poverty cycle).

The healthcare industry already has some mechanisms to limit economic damage and provide options for economic recovery. Many healthcare entities have volunteer services for peer support, social workers to assist with access to benefits, programs for planned debt payment, etc. Hospice programs provide respite care and bereavement services to help families return to normal social functioning. Daycare programs for low-intensity care patients allow family members to stay in school or at work. Physicians have been encouraged to increase the consideration given to costs when selecting treatment goals with patients and families. Such options can be considered part of inbuilt economic resilience offerings.

Some features can be identified that particularly characterize IER options and their goals. IER programs should:

  • 1)Aim to minimize the economic impact of illness on the household, whether due to the costs of care or the lost income experienced by the patient and family;
  • 2)Build on existing clinical and support services already provided to patients and families because the programming should fall within the existing professional mandate and the programming must be reasonable and sustainable if the medical service industry is to embrace it;
  • 3)Target patients and caregivers to keep the programs free from competition for eligibility by people not suffering from illness;
  • 4)However, in keeping with the profession's obligation to engage in activities that are good for the community specifically and society more generally,38 such programming should also: build up the community's economic and social capital, meet local needs, promote appropriate levels of expertise in the community (often low technology is the appropriate level to avoid dependence on new business presence), and favor forms of programming that may become self-sustaining.

These features characterize a constellation of possible programs; they do not seek to define any single program. Indeed, IER options are likely to be characterized by the wide diversity of forms they may take, each to suit the setting and patient population.

How should economic resilience needs impact a clinician's activity?

Clinical practices that take economic resilience needs into account should differ in many ways from those that do not. The clinician's first evaluation may involve selection of tests that are more or less costly. In discerning the goals of care, the economic impact on the household should be considered; for example, if curative interventions would cost more than symptom management alone and would yield little regarding prognosis but would bankrupt the household and end the children's education prematurely, the patient and family may choose symptom management alone. Alternatively, it may be important for securing benefits for the surviving spouse to stay in the workplace longer, and more aggressive life-prolonging therapies may be used. Advance care planning discussions should include attention to the caregiver: is the caregiver able to stay at work or in school? Is he or she still covered for health insurance? After the patient's death, is the family grief manageable or is it interrupting their ability to work or stay in school? If any of these inquiries indicates a problem, the clinician may need to suggest interventions to assist the caregiver.

Guidelines for disease management should be examined for each decision point relative to economic considerations and each such point should explicitly address those considerations. A similar approach to inserting palliative care considerations into all disease management guidelines has been proposed, and is quite manageable.39

Service delivery programs should add IER options to existing social work, volunteer, and support services. Clinicians and programs, however, need more tools to assess a household's economic resilience and gauge when to refer a patient or family to IER options, and they should be held accountable for considering economic resilience as part of their care. Cancer centers, for example, should gather data on the economic impact of cancer on their patients, and how this factors into their choice of treatment options. Data regarding the economic impact of illness should be gathered and publicly shared at the district, city, state, and national levels.

How would household economic resilience and IER options be evaluated?

Program evaluation will be essential in selecting and developing promising IER options, and in dropping failed efforts. Existing methods, such as those for evaluating new interventions and costs,40 are likely to be applicable for some aspects of IER. Similarly, existing outcomes measures for household economics may be applicable but may also need to be developed. These should include evaluation of how the illness indirectly impacts a household; costs shouldered by patients; and use of available benefits, indices of community economic well-being, and community expertise, etc. IER options should also be evaluated for what they cost the healthcare industry. Process and outcomes measures relevant to economic resilience are also necessary in service delivery settings, at both the practice and institutional levels.

A Possible IER Option: Palliative Care With Training for Caregivers

Our proposal for an IER option is based on palliative care with training for caregivers, and this model is dependent on both features. Palliative care as it currently exists may provide some resilience against economic devastation. Supplemental training of caregivers could add a layer of resilience for those who need it. We are proposing a type of IER option rather than a specific program; different settings will require different specifications.

Does hospice/palliative care help household economic resilience?

The possibility that palliative care could reduce the cost of care for cancer near the end of life is based on the assumption that fewer interventions would result in lower direct costs. The data to support this are not conclusive.41–46 A recent randomized, controlled trial of 298 patients did find a 33% reduction in direct costs of care, but larger studies will be necessary to confirm the finding.47 The important point, however, is that these studies all fail to consider indirect costs. The 1996 report of the US Panel on Cost Effectiveness provided guidelines for healthcare cost-benefit and cost-effectiveness research.48, 49 The guidelines require consideration of: healthcare resources used50; nonhealthcare resources used due to illness, such as caregiver time; and quality and quantity of life. Because palliative care aims to have its most significant impact on function and quality of life and because it aims to care for the family as well as the patient, these nonmedical, indirect effects are all important to reach a reliable conclusion regarding the impact of palliative care on cancer costs to the household. To underscore this point, we note that the World Health Organization defines palliative care as improving the quality of life of both patients and families by preventing and relieving pain through the early identification and treatment of pain as well as physical, psychosocial, and spiritual issues and goes on to say that palliative care provides a support system to help patients live with a high quality of life until death and provides a support system for the surviving family.51 Elsewhere, we have also illustrated with a real case how palliative care appeared to impact the total cost of cancer and its care.50 Figure 1 further illustrates the goals of palliative care to keep the patient and the caregiver functioning and integrated in his or her social world, and that may include the workplace. One study recently indicated recently the correlation between hospice care and well-being of the caregiver, suggesting that this part of the hospice goal is at least to some extent attained.52 Nonetheless, we acknowledge that data to date are insufficient to fully establish that palliative care can fulfill this tantalizing promise. We call for priority research on this question toward the goal of evaluating whether hospice/palliative care provide some household economic resilience.

Figure 1.

The goals of palliative care include keeping the patient and the caregiver functioning in their social world, including the workplace.

Supplemental caregiver training as a component of the IER option

Hospice and palliative care involve family members in patient care activities to a much greater extent than most areas of medical practice. They are usually taught skills such as how to move the patient safely; how to administer medications, often including the use of sterile techniques for syringes, pumps, and intravenous equipment; and how to change wound dressings and manage bodily fluids with universal precautions. Caregivers may also be taught how to go through their own adaptations to loss and how to help other family members.53, 54 A social worker may help show them how to manage insurance and government entitlements, and general navigation of the health system. All this is provided by home hospice, and at least in part by some other palliative care service arrangements such as inpatient or ambulatory care, which often precede home hospice. A sizeable investment of education in the family of terminally ill patients is routinely made by hospice and palliative care.

For caregivers and children who have to leave work or school, the education offered by palliative care should be considered an alternative form of work or study with on-the-job training. In some countries, the caregiver can receive job security and/or a stipend while performing in this role.55, 56

To programmatically realize the potential of this investment in human capital, additional training programs and certification would be necessary to define uniform standards and assure reliable quality. Existing programs for volunteer, caregiver, and nurse's aide training provide good starting points.57–59 Depending on the country and the setting, certification could be provided by a national body or by private bodies with mandatory or voluntary accreditation through a national accreditation body.

While acknowledging the magnitude of the challenges in creating a national standard of this nature, we also note the magnitude of the need that incurs cost at the household, workplace, and national level. We are calling for additional modeling and empiric studies of such options.

In which economic environments might caregiver training help?

For caregiver training to work as part of an IER option, it has to be culturally acceptable and acceptable to the caregiver. The economic environment also has to be such that the program is feasible and sustainable. For example, settings in which the market for caregivers is already saturated are most likely not hospitable for newly trained caregivers. Settings in which there is insufficient wealth in the community to pay for caregivers may present a challenge, because the economic returns may not be sufficient to justify the IER option. A start-up phase in which redeemable vouchers are provided to households in need of caregivers would likely be feasible in some settings.

For populations with both low income and poor access to services, an additional benefit would be increased numbers of and mobility of healthcare services, allowing greater access to skilled caregivers. For example, as it stands currently, 57% of people in Uganda never see a healthcare worker in their lifetime.60 Trained caregivers could help provide local care and bridge to more advanced skilled services when necessary.

Preliminary international work

We have started to investigate possible settings for modeling the type of hospice caregiver training program we propose. One such setting is in Kampala, Uganda, where Hospice Africa Uganda serves primarily cancer patients and has a strong infrastructure for home hospice; the other is a cancer support program in India.61, 62 Palliative care research in Africa indicates that the main perceived needs of terminally ill people and their families are relief from pain, financial support, and adequate caregiver training.63 Because there are not enough physicians or nurses available, most dying patients are cared for primarily by family members—nearly 25% of them by their school-aged children.15 Our pilot study at Hospice Africa in Uganda found that 95% of caregivers would be interested in becoming certified caregivers.64 A study of the program in India indicated manageable costs (US$3-4 per quarter per patient) for the provision of palliative care.62

Costs of the IER option

Start up-costs over the first few years should be within the range of average community education and training program grants. The IER option we are proposing may have the potential to become economically self-sufficient and independent. Other IER options might need continuing, modest support but might be a justifiable use of taxpayer or other funds due to the positive impact they may have on the health and economic stability of the population.

Applicability to cancer care settings in the US

The health and economic impact of cancer on some US populations rivals the severity found in developing countries.22 While poor populations in the US are often in close proximity to wealthier populations, making access to employment easier than in rural areas of the developing world, cultural aspects of entrenched urban poverty may mitigate in the other direction. IER options could be applicable and should be carefully considered for cancer populations in the US.

Related Programs

Our proposal for hospice and palliative care with caregiver training has some similarity with several other programs that are in development or established.

Caregiver training programs include some that develop national in-home caregiver training standards.65 Research on how to best support and train caregivers for elders also exists.66 The National Cancer Institute has launched a $25 million program to reduce inequitable barriers to cancer care through a Patient Navigator program in which lay people (or professionals) are trained to help coordinate services.67 In addition, we have started to build caregiver training that runs in parallel with oncology clinician education in palliative care as part of the National Cancer Institute funded Education in Palliative and End-of-life Care Project–Oncology (EPEC-O) Project.68 However, none of these training programs is yet linked to caregiver employment for the purpose of economic resilience.

On the other side, many development projects exist, albeit none that we know of that use caregiver training to facilitate work within the healthcare industry. Projects to build economic development principles together with healthcare include Project HOPE's Village Health Bank Program. This project gives small, moderate-interest loans to young women who in turn meet biweekly to pay back their loans and, concomitantly, receive education sessions to empower them in their and their family's healthcare. The household income and savings of the women improved significantly, as did their health knowledge and behaviors. By 2004, 11 years since it began, projects from 3 of the 7 countries involved in this project had become financially self-sufficient.69, 70 An associate of the Grameen Foundation, founded to promote the principles of development through microloans pioneered by Nobel Prize winner Yunus, has called for the integration of microfinance with healthcare.71 He cites as evidence for the viability of an off-shoot of the Grameen Bank which provided microinsurance options.72 After 10 years in operation, this entity had recovered 90% of its operational costs and had serviced >300,000 patients, approximately two-thirds of whom were women.

Does the Healthcare Industry Have the Capacity to Build IER Options?

In 2004, the US spent $1.9 trillion or $6280 per capita on healthcare, representing 16% of the country's gross domestic product.73 The healthcare industry is 1 of the largest and fastest-growing in the US economy. Between 1994 and 2003, funding for US-based research rose from $37.1 billion to $94.1 billion, 57% of which came from the healthcare industries and 28% from the National Institutes of Health.74 With budgets this size and corresponding infrastructures, the US healthcare industry has the capacity to develop IER options.

However, capacity for the health sector to develop IER options is not dependent on financial wealth alone. Low-income countries have the capacity to develop healthcare in ways that play to their own strengths. In Uganda, for instance, 2 modest studies on hospice care indicated considerable need and capacity for local care, suggesting that market capacity for development exists.15, 64 South Africa has built home hospice programs for townships, India has created a volunteer-based community hospice system, and Argentina and Romania have provided a significant infrastructure for palliative care, to give just a few examples.21

Medicine has the capacity to generate a large service economy in wealthy countries, and also to build a community-based service in extremely poor areas with very little infrastructure.

Limitations of IER Options

We propose IER options as 1 approach to limiting the economic devastation that results from cancer and other illnesses. They are not a panacea; the medical profession cannot provide economic resilience options for all patients and their families. For those families not eligible for IER options, the profession should continue to work with businesses and public agencies in their area to ensure that programs are available in an equitable fashion.

Conclusions

Economic devastation can occur as a consequence of cancer and its treatment. As the population ages and cancer occurrences rise, the problem will only grow. For the economically vulnerable in wealthy countries and for many in poor countries, cancer may tip households into poverty that is multigenerational, predisposing succeeding generations to poor child development, poor education, and increased illness burden. We argue that this impact constitutes a form of illness-related suffering to which the medical profession must respond. IER options should be tailored for use by patients and their families, drawing on the unique expertise and capacities of the medical profession, and benefit society by reducing all forms of suffering related to cancer and its treatment. We have considered 1 type of such approach: hospice/palliative care with training for family caregivers. We urge oncologists and other medical professionals to develop and study programs that provide options for economic resilience to households facing cancer and other life-shortening illnesses.

Acknowledgements

We thank Paul Balfour for assistance with references. We thank the Lance Armstrong Foundation for its support of our preliminary work in palliative care education in India and training of caregivers.

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