* Also contributing for the Kellogg-Feinberg Economics and Illness Study Group listed at the chapter’s end.
** While carrying out this research, Tapas Kundu has been associated with the Centre of Equality, Social Organization, and Performance (ESOP) at the Department of Economics, University of Oslo. ESOP is supported by the Research Council of Norway.
Economic devastation is a fairly common consequence of illness. As described in the previous chapter, in the United States, even among employed, higher socioeconomic groups with financial reserves and health insurance, terminal illness results in lost assets for the household that can take more than 6 years to recover and can result in bankruptcy. Regions with stronger social safety net policies may have lower rates of economic damage to households, and resource-challenged countries with weaker social safety net policies appear to have higher rates of illness-related economic devastation. However, even in Canada, with its national health scheme and perhaps better social safety net, patients and families bear some significant costs as a result of terminal illnesses, mostly in family caregivers’ time.Much of the economic impact of illness is usually related to the lost work income of the patient if the patient is a bread-winner and to the lost work income of the family caregiver if full or partial exit from the workplace is required to take care of the patient. However, some of the economic impact is caused by the direct costs of care services. This component of economic impact should be considered a side effect of treatment and the usual informed consent procedures should be taken; that is, steps should be taken to ensure that the patient is aware of the side effects and still wants the intervention, and to minimize the side effect’s impact.
A serious commitment to medical professional values demands attention to the mechanisms of illness-related economic distress and sources of its amelioration. This is particularly true in palliative care, in which field the care of social dimensions of illness is a distinguishing feature. The capacity to minimize impact and maximize recovery can be summarized in one term: resilience. Enhancing economic resilience of households coping with serious and terminal illness is an essential part of palliative care.
Since the beginning of modern hospice and palliative care several decades ago, programs have offered more support to the household than many other types of medical care. In so doing, in economic terms, palliative care programs variously infused monetary and human capital into the household by (1) maximizing the patient’s ability to stay in the workplace by optimizing symptom management; (2) training the family caregiver to care for the patient (a form of skills training); (3) supporting bereavement and thereby optimizing family caregiver resumption of life in the workplace; and (4) offering return-to-work assistance.
Providers of palliative care need to understand and optimize this aspect of care and leverage its impact for households toward the goal of achieving household economic resilience as part of palliative care. Toward the goal of continued growth in understanding and intervention in this area, improvements in household economic resilience should be a quality outcome measure for palliative care services in the future.
The Mechanism of Illness-Poverty Cycles
It is nearly axiomatic in public health that poverty increases both the risk of getting sick and the difficulty of fighting illness. Through many mechanisms, including poor living conditions, limited access to primary and preventive health care, and accepting whatever employment can be found even if it entails social, mental, or physical risk (such as prostitution, mining, etc.), poverty can lead to declining health in the individual and more prevalent disease in the community. The cycle comes full circle, as disease can directly lead to or deepen poverty, because of the incurrence of doctors’ fees, paying for diagnostic and therapeutic interventions, transportation costs, and so on. Disease also frequently decreases a patient’s work productivity, further worsening the financial burden through significant wage losses.
Thresholds for an Illness–Poverty Trap
The financial burden caused by illness has long-term implications. Poor households can be trapped in poverty for generations when illness affects occupational choices of the household. Studies show that children in disease-affected families are less likely to remain in school. They may be needed at home to take care of the patient when families cannot bear the costs of professional nursing or families may be unable to afford school fees. Lack of education adversely affects future occupational choices and further results in low future income for households. In this fashion, disease can trap households into an illness–poverty trap over generations. Economic studies on health and development demonstrate this apparent illness–poverty trap in various resource-constrained countries. The severity of this trap multiplies in countries without adequate social welfare programs, where low income is highly correlated with lack of healthy living conditions and a greater risk for disease.
Households with income below certain critical thresholds are vulnerable to the illness–poverty trap. With income being almost insufficient to meet current consumption need, these households rationally respond to the additional financial burden caused by illness by altering its members’ current and potentially future occupational choices. It is therefore important for clinicians to estimate when the financial impact of illness becomes detrimental to health, either for the patient or for the patient’s household members. Efforts can then be made to prevent that level of hardship and to assist recovery from it.
However, research has offered relatively sparse guidance on this topic. One researcher estimated that 10% loss in income in developing countries could be catastrophic. Importantly, the threshold level at which financial impact becomes detrimental depends on factors internal to the household and external to it. So calculation of impact in a way that meaningfully relates to this threshold can be problematic.
One common-sense rule of thumb that clinicians can use is that if a household is unable to sustain the patient’s medical care without significant jeopardy to any of its members’ food intake, substantive medical care, workplace involvement, or education, then the household may be at or near economic devastation, and intervention may be imperative and health care service choices must be appropriate if an illness–poverty trap is to be prevented.
Why Is Health Care Spending High Near the End of Life?
The issues of economics and health care reach their greatest proportions when the illness is life threatening. Across an average person’s lifetime, a large majority of health care spending occurs in the last months of life. Further, the indirect costs are very large and probably track the time course of direct costs, or even rise further during home hospice care when care relies heavily on family support. For this reason, palliative care clinicians see patients at a time and in a circumstance in their lives when their vulnerability to the economic impact of illness is probably at a lifetime high for them.
Changing Prognosis, Changing Values, and the Rule of Rescue
For many years, awareness that costs of health care were highest at a time when prognosis was worst lead to a general assumption that something irrational or involuntary was driving decisions to intervene inappropriately with medical care. Why, so the logic went, would anyone want to spend exorbitantly on something destined to fail when one could be having low-technology quality of life with one’s loved ones? However, the reverse analysis that the spending is appropriate is also persuasive for two reasons. First, the less it looks like a person has time to live, the more that person may value what does remain. Second, the less time one has to spend whatever resources are available, the more inclined a person might be to spend it—after all, as the logic goes, “the dying can’t take money with them.” The motivation to preserve resources for the next generation may be challenged by the desperation to live, and for many people, illness-related suffering does not engender altruism.
Existential Equanimity at a Personal, Family, and Societal Level
Individuals who seek to make use of palliative care services and eschew further curatively intended intervention have often reached a psychological point that accepts the inevitability of death. For some, this is because they have tried every available curative intervention and their illness and suffering is increasing despite every effort; often they are simply exhausted from all the suffering. For others, it is because they value quality of remaining life over the suffering associated with curative interventions.
But for many, reaching such a point is very difficult. The presence of palliative care programs that do not require refusal of further life-sustaining interventions appears to allow many more people to access palliative care and also seems to result in reduced direct costs of care.
Quite likely, peoples’ decisions are driven by their level of resolution and acceptance of mortality, a state of mind that might be called existential equanimity or maturity . It is not easy to assess this state of mind formally or directly in the present state of palliative care’s development as a field because measures do not exist for it. However, the clinician can probably gain a pretty good sense of the patient’s disposition by engaging in discussion about his or her hopes for the future.
In terms of planning care interventions, the clinician can and should stay in frequent touch with the patient (or family as relevant) about any changes in the primary goals of care. Clinicians can also tailor the schedule of medical interventions and make sure the patient has the option for care settings (especially home) that allow for intergenerational visits and care by a social worker, psychologist, or pastor who may, without rushing things, facilitate life narratives or other stage of life–appropriate legacy-making, baton-passing activities that may foster some settledness and acceptance in the patient.
What Is Economic Resilience?
The definition of economic resilience of other social structures, usually countries, can be adopted for use in describing household economic resilience in the face of illness. We adjust one such definition from economists here:
Economic resilience of the household in the face of illness is the “nurtured” ability of the household’s economic state to recover from or adjust to the effects of illness.
Components of economic resilience of the household in the face of illness are, however, less readily adopted from national economics. A practical way to think of the situation for clinicians is to focus on the nurtured components of economic resilience. These can be considered as twofold—those that (1) help prevent households from falling into poverty even in the face of illness and (2) help households get out of the illness–poverty cycles.
The Capacity of Palliative Care to Engender Economic Resilience
Staying Away from the Illness–Poverty Trap
Optimizing Use of Goals of Care and Advance Care Planning
Hospice and palliative care have evolved as disciplines focused on the goals of symptom management, quality of life, acceptance of natural death, and care of the family as well as the patient. Even as its scope broadens to include patients seeking to extend life, still palliative care focuses on the patient’s goals for what remains of his or her life and on the corresponding medical care goals. Attentive matching of the patient’s goals to care provided ensures that at least the care provided for is desired care.
Advance care planning discussions can also be helpful so that goals of care are clear for the event that the patient cannot communicate them. However, it is also known that goals for care change with the experience of serious illness. It is appropriate to let patients know this when they are making their advance care plans and ask the patient’s wishes about how to take this phenomenon into account for him or her. Some patients will ask to have current wishes honored; others will allow for the substituted decision maker or proxy to determine what the patient would have wanted had he or she been able to return momentarily to a condition in which a wish and its communication were possible. Many patients, desiring to minimize family burden, want the decision maker to also consider what is best for the family. Completion of advance care planning in the presence of the surrogate decision maker allows the decision maker to become familiar with the patient’s values for their own quality of life, including the threshold beyond which the patient would no longer want to have invasive treatment, as well as the degree of flexibility they want the decision maker to have. This knowledge may help with decisions in unpredictable situations, relieving the stress experienced by the decision maker, decreasing feelings of guilt or conflict during bereavement, and consequently lessening the risk of complicated grief. Overall, since many will ask to have current, supportive care goals honored, the population’s cost of care will likely decline with such an approach.
Patients who enjoy equanimity about their mortality appear to have a higher quality of life than those who have unresolved concerns or are fearful of death. Patients also respond overwhelmingly positively to engagement in activities such as Dignity Therapy (see Chapter 41 ). Clinicians can invite patients and their families to participate in these life review, intergenerational role-passing type of activities. It is not known whether such activities foster equanimity and perhaps less inclination to spend resources exhaustively near the end of life, but it seems possible. Because that kind of care has independent worth, and as long as it is not felt by any party to be promoting premature closure, clinicians should be trained, or should provide professionals who are trained, to offer it.
Optimizing Symptom Management and Family Caregiver Support
Palliative care has another capacity to minimize the economic impact of illness on the household. This capacity derives (1) from the improved symptom management for the patient that allows longer duration in the workplace and less dependence on the family caregiver, and (2) from the support offered to the family caregiver, including respite care and bereavement support. The patient and family caregiver journeys are described graphically in Figures 48-1 and 48-2 .
