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December 1, 1999

Private and Public Choices in End-of-Life Care

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JAMA. 1999;282(21):2078. doi:10.1001/jama.282.21.2078-JMS1201-4-1

People are living longer with fewer disabilities.1 Technological changes are partly responsible for this phenomenon, yet new technology is often costly, and many interventions at the end of life seem wasteful. Given rising health care costs and projected Medicare deficits, end-of-life care is a possible target for expenditure reduction.2 If such expenditures are limited, there might be decreased pressure to restrict other health care spending. Alternatively, end-of-life savings could go toward expanding Medicare benefits, such as those covering prescription drugs.

Much discussion about end-of-life care focuses on private interactions among patients, caregivers, and physicians. Because of financial incentives, lack of knowledge, or poor communication with patients and families, physicians may not make appropriate care decisions. Even if such decisions reflect patient and family preferences, viewed from a collective perspective, there may be better ways to deploy resources currently spent on end-of-life care.

Given the social norm to honor patient and family preferences concerning end-of-life care, many issues remain unresolved. Theoretically, decisions regarding preferred care may be clear, but practically those decisions only come after the fact. Many patients fear the dying process and the burden on their families even more than death itself.3 Patients' levels of consciousness and ability to communicate during the 3 days before death vary by medical condition.3,4

In addition, little is known about patients' and families' preferences for care at the end of life. Do care preferences remain stable, or do they depend on where one is on the life spectrum? How often do the preferences of patients and family members differ,4 and how are such differences resolved? How well informed are persons involved about treatment options, especially for palliative care administered near the end of life?

Although there is a positive correlation between the care preferences of patients and their physicians, there is much to be learned about interactions between patients, caregivers, and physicians.5 Lack of knowledge among physicians about treatment options and legal and regulatory requirements, such as regulations on pain-prescribing practices, may impede provision of appropriate care.6 Hospital payment policies favoring rapid discharge may discourage physicians from providing palliative care. The relative importance of these factors in the larger picture of end-of-life care is unknown.

Impending death is an important predictor of health care spending,7 but this effect is smaller for the oldest people approaching death and greater for those younger. This suggests the advisability of a pattern of less aggressive care when the possibility of life extension and quality of life enhancement lessens, but no study to date has quantified the amount of nonbeneficial care actually provided to persons near death.

The role of insurance is complex. When Medicare and other insurers cover end-of-life care, more such care will be demanded, both beneficial and nonbeneficial. Much of the beneficial care is likely to be supportive. If not financed by insurers, the cost of such care is borne by families. The public policy issue here is not whether such care will be provided, but who should pay. Should cost be spread among members of society or borne by families? Chronic and terminal illnesses have substantial financial consequences on families.8 Unlike other unequally distributed hazards, such as house fires or car thefts, we all face death, implying that some collective judgments about such care are appropriate. The guidelines should partly depend on effectiveness parameters, but there is also the normative issue of how much good outcomes are worth, and how this calculus is modified by age. Such guidelines will be hard to develop since much aggressive care will appear to have been nonbeneficial only after death; the perspective is often quite different earlier.

Resources not devoted to health care may satisfy other societal objectives. The percent of health care cost attributable to end-of-life care has been remarkably stable over time.7 Projected savings from greater use of advance directives, hospice care, and less aggressive treatments have been estimated at 3.3% for total health care and 6.1% for Medicare spending.2 These reductions are programmatic and exclude increases in the cost of care borne by families. At current rates of increase, a 6.1% reduction would offset 1 to 2 years' increase in Medicare program costs, a very partial antidote to forecasted Medicare deficits.

Policies to improve the provision of end-of-life care would only offer minimal promise for cost containment. Greater savings could undoubtedly be achieved by imposing severe budgetary or capacity constraints on the financing and provision of care.2 But, a focus on rationing care for persons at the end of life would be widely viewed as inequitable.

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