The cost of medical care at the end of life can be high in ALS because many patients require an assistive ventilatory device, use expensive medications, require medical procedures and need hospitalization. Health care insurance, based on Medicare guidelines, does not reimburse for many basic treatments or types of care essential for patients with ALS. These treatments are considered unnecessary or "custodial" rather than "medical" under the current guidelines, thus depriving many patients of much needed care or burdening them with considerable payments for this care.
The results from a 1996 Nationwide Inpatient Sample study showed a 40 percent higher hospitalization cost for ALS as compared to non-ALS patients, and identified nutritional and respiratory morbidity as the most common reasons for admissions. In addition to the expensive direct costs, the indirect costs of informal caregiving of older adults can be staggering.
Most cost studies in ALS are done in association with treatment trials, and there is no analysis or evaluation of indirect costs. Additionally, there are no studies on the costs of end-of-life care, the cost versus quality of care offered by different medical settings and the cost of caregiving on employers.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.