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The Sustainability of Dying

editors | 02 February, 2009 22:07

Mario D. Garrett PhD, mgarrett@mail.sdsu.edu

Chairman, Department of Gerontology, San Diego State University

1/27/09



Can we afford to die? The inevitability of death does not determine how we die, and others’ attempts at diverting us from dying. Dying is out of our control; not just its inevitability, but also to some extent the attempts that are made to delay it. Even if successful, prolonging life is temporary. Although death is a constant, dying remains a variable, complex, and emotive issue.


Mortality

How we are dying is changing. We now die less from infections—perhaps the most famous being the Spanish Flu epidemic of 1918 which killed 25-50 million people—and more from long-term diseases 1. This change has resulted from better public health—such as clean water, good diet, and education—and from advances in immunization, which are reducing the threat of contagious diseases. As a result, populations are getting older and therefore more affected by chronic (long-term) diseases. Although amenable diseases—communicable diseases, maternal and perinatal conditions, and nutritional deficiencies—still account for a third of all deaths worldwide 2, the challenges in health care, especially in the United States, lie in the management of chronic disease. In the United States the primary killers are cancer, heart disease, diabetes, and Alzheimer’s disease 3. This epidemiological transition—from infectious to chronic non-communicable diseases—is well established in the United States. The transition of our health care system in dealing with this is, however, another matter.


Health care costs.

By 2007, total spending on health care in the United States was $2.3 Trillion or $7,600 per person 4. A historical perspective—since our past will determine our future—reveals an emerging trend where the percentage of the Gross Domestic Product (GDP) that is spent on national health has been gradually increasing from 5.2 percent (in 1960), 7.2 percent (in 1970), 9.1 percent (in 1980), 12.3 percent (in 1990), to 13.8 percent (in 2000). In 2007, total health care spending represented 16.2 percent of the GDP 5. Projections show that U.S. health care spending is expected to increase to $4.2 trillion in 2016, or 20 percent of GDP 4.


Rising health care costs are an emergent issue in the United States, unlike other countries which seem to have contained costs. According to the Organization for Economic Cooperation and Development (OECD), U.S. health care spending in 2004 accounted for 15.3 percent of GDP--the highest share in the OECD and more than six percentage points higher than the average of 8.9 percent in OECD countries. By comparison, Switzerland, Germany and France allocated 11.6, 10.9 and 10.5 percent of their GDP to health 6. But despite this enormous outlay of resources on health services, nearly 46.6 million Americans remain uninsured, in contrast to other industrialized nations which provide health services to all their citizens 7. In addition, for those Americans lucky enough to have insurance, these dollars do not translate to better health.


While health care costs in the United States are mushrooming 8, consuming a greater part of our GDP, there exist no comparable improved health outcomes, such as life expectancy 9. The United States continues to slide further behind other countries in health status. In 1997, the U.S. ranked 15th in mortality. Since then, Finland, Portugal, the United Kingdom and Ireland have reduced their mortality rates from diseases that can be cured (amenable diseases) more rapidly than the United States. All now have better rates than the U.S. 10. Similarly disappointing are results of child well-being, in which the U.S. ranked second to last when compared to 21 countries similar to the United States in terms of their economies11.


If U.S. health care costs are not contributing to improved health, where are resources going? International disparity in health care spending results not simply from varying cost of treatment. The United States spends six times more per capita on the administration of the health care system than its peer Western European nations 12. Moreover, more U.S. health care costs are primarily expended on the dying.


Health Care Costs and Dying

Eli Ginzberg, the noted economist, has called it, “the high cost of dying” 13. Medical care costs at the end of life peaks 14. Historically this is a well established trend. Cost increases from the late 60’s have plateaued, and are remaining constant. Data for 1967 show much the same relationship between expenditures for people who died and expenditures for those who survived 14.


Although many assume that the U.S. system is financed by the private sector, government spending accounts for a growing portion of the health care services. In 2006, this figure reached 46 percent as Medicare Part D’s coverage of prescription drugs took effect 15. Medicare, the primary federal health insurance program, spent almost $140 billion for inpatient care of severely ill patients who died during the period from 2001 to 2005 16. The average per capita Medicare spending during the last two years of life on care in the inpatient setting—payments to physicians for inpatient services as well as payments to hospitals themselves—was about $25,000 16. During the five-year period 2001–05, nearly a third of total Medicare spending—31.7 percent—went toward the care of moribund patients with severe chronic illness during their last two years of life 16.


An implied assumption is that the high medical expenses at the end of life are due largely to aggressive, intensive, expensive, and high-technology interventions for patients who are moribund. Contrary to this popular belief, data show that the number of decedents with very high medical expenses is quite small. In addition, we cannot determine how many of the patients who died were clearly terminal patients 14. As Scitovsky argued 14, a methodological difference exists between applying resources to terminal patients and applying resources to avert sick people from dying. Although longitudinal studies indicate that approaching death, rather than age, may be the main driver of health care costs 17, because 73 percent of all deaths in 2005 in the U.S. occurred among people who where 65 years and older 18, demography will play a role in determining health care costs. However demography cannot explain the variability of health care costs across states at the end-of-life.


Geographic variability

Geography can help us understand the variability in health care costs, and why. The highest spending states consumed more than one and a half times the Medicare dollars spent by the lowest spending states. If you examine total Medicare spending during the last two years of life for patients with at least one of nine chronic conditions, three states—New Jersey ($59,379), California ($57,914 per person), and New York ($55,718 per person)—spent at a level more than 20% above the national average of $46,412 per person. At the opposite end of the spectrum, three states—North Dakota, Iowa, and South Dakota—spent less than $35,000 per person, more than 25% below the national average 16. As an extreme case, Hahnemann University Hospital-Philadelphia, PA, spent an average of $117,998 per decedent during the last two years of life (2001-2005) 16 p128.


A recent study in California 19—one of those expensive states—has reported that Medicare patients in their last two years of life who lived in Los Angeles from 1999 to 2003 made 2.3 times more visits to specialists than did comparable patients in Sacramento. They also spent twice as many days in intensive care and were hospitalized 1.6 times longer. The argument is that if facilities and services exist, everyone, including decedents gets to use them. This is known as supply-driven demand—if you have it, they will come. Despite the fact that Los Angeles has a greater number of specialists and hospital beds per capita than most regions of the state, in the five-year period from 1999 to 2003 hospitals in Los Angeles were less likely to provide proper care for patients suffering from heart disease, congestive heart failure, or pneumonia than were hospitals in the far less expensive Sacramento region 20. Los Angeles-region hospitals also ranked lower on patient satisfaction surveys. Medicare spent $90,000 per patient at some California hospitals, but less than $20,000 per patient at others 6. Across the United States the variability of costs is driven by the availability of services (supply). The projected Medicare expenditure for the remaining life of a sixty-five-year old in Los Angeles is $84,000 greater than for a sixty-five-year old in Seattle—while the difference between Portland and Miami is $125,000 21. Other recent studies have replicated the widespread variation in care observed for Medicare patients for other patient populations 22.


Supply-Driven Demand

In most cases we do not know that a patient is terminal. This point was made by Scitovsky 14 when she identified the methodological problem of defining terminal illness retrospectively (when the patient dies) and when defined prospectively (in the prognosis). When a patient is determined to die (in the prognosis) cost containment strategies may be put in place with Advance Directives, Living Wills, Do Not Resuscitate (DNR) directives, the Oregon-initiated Physician Orders for Life-Sustaining Treatment (POLST), and Hospice. However these options remain underutilized. An analysis of a random sample of all U.S. deaths in 1986 found that about 10% of decedents had living wills 23, whereas more recent studies suggest rates of 15% to 25% in the general public 24. In addition, when they were completed, most did not become part of their medical record, and did not influence medical care 25, 26. Although Hospice is an increasingly accepted choice, often considered to be the "gold standard" of optimal end-of-life care, it is estimated that only 43% of eligible patients actually receive hospice services 27. Traditionally developed for cancer patients, hospice is gaining broader appeal. In 2007, the top five chronic illnesses served by hospice included heart disease (11.8% of admissions), “unspecified debility” including frail elders with multiple illnesses and steady deterioration (11.2%), dementia (10.1%), and lung disease (7.9%) 28. The heterogeneity is primarily being driven by more accurate prognosis of diseases.


Still, despite these options, one in five Americans still die using ICU services. The aging of our population, which will drive the death rate, will require either a system-wide expansion in ICU care for dying patients or, a healthcare system that pursues rationing, more effective advanced care planning, and augmented capacity to care for dying patients in other more appropriate settings 29.


Supply-driven demand assumes that the patient wants the treatments being offered. But it is becoming increasingly likely patients do not want these treatments (e.g. as with advance directives) but that with an aging population it is becoming more likely to have decedents who are not cognitively competent to assert their wishes because of the increasing prevalence of dementia.


Dementia

In the National Center for Health Statistics’ latest study, Alzheimer’s Disease (AD) passed diabetes to become the sixth leading cause of death in the United States in 2006. An estimated 72,914 Americans died of Alzheimer’s disease in 2006 30. A recent Alzheimer's Association report estimates that 5.2 million people in the United States have the disease, including 200,000 who are younger than 65 years 31. Dementia means a gradual and progressive decline in memory, thinking and reasoning skills. Living with a degenerating disease that erodes an individual’s ability to think and behave rationally has multiple social implications, one of which is making decisions about health care and end-of-life. Who will define end-of-life interventions for the 5.2 million Alzheimer’s disease sufferers today? With a predicted pandemic of Alzheimer’s disease, what systems do we have in place to manage the most costly period of health care services--at the end-of-life? Will cost determine our criteria?


Conclusion

Increasing cost drives health care spending as a major issue. That we spend more on health care than any other country, that we are getting less healthy, and that Americans have a growing ambivalence of how to deal with dying will need to be addressed because this path of treating the dying is unsustainable. These issues will be forced upon us. If, as economists predict, that our current ailing economy will continue to suffer stresses because of existing economic liabilities such as Social Security and Medicare, then it is becoming more pertinent to address the sustainability of dying. This year the annual Social Security surpluses will begin to shrink 32. By 2017, Congress will have about $100 billion less to spend annually since spending will exceed projected tax collections. These deficits will quickly balloon to alarming rates so that after adjusting for inflation, annual deficits will reach $67.8 billion in 2020, $266.5 billion in 2030, and $330.9 billion in 2035. The latest report by the Social Security Trustees in 2008 summarized the situation succinctly by stating that “Projected long run program costs are not sustainable under current financing arrangements. Social Security's current annual surpluses of tax income over expenditures will begin to decline in 2011 and then turn into rapidly growing deficits as the baby boom generation retires. Medicare's financial status is even worse.” 33 Despite this overwhelming evidence, Americans are becoming more optimistic about Social Security’s and Medicare’s future 34. We need to narrow this gap between reality and wishful thinking. Our failing economy will compel us to examine our practices around dying. The argument is not that it is too costly to die, but that it is too costly to die unprepared. Sustainability of dying implores us to talk about our eventual expiration and to design a course of action that maintains our control, dignity, and integrity.


Recommendations

1. Self: Develop a living will, advance directive, or "five wishes" to define how you would like to be treated at the end of your life.
2. Friend or Family: Talk to family and friends about what they want at the end of life, who will make decisions for them in case of incapacity.
3. Government : Promote initiatives within federal and state governments that define humane and caring treatment of those at the end of life that make dignity and wishes of the individual paramount.


Citations:

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copyright 2009 Mario Garrett


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