Promoting Excellence : ALS Executive Summary : Cost of Care

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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.


Practice Recommendations

  • Follow evidence-based guidelines for treating terminal phase symptoms.
  • Limit medications at the end of life that are normally used for altering disease course.
  • Encourage discontinuation of all disease-specific medications (e.g., antioxidants, anti-inflammatory drugs and antiglutamate agents) upon admission to hospice.

Research Recommendations

  • Initiate cost-benefit and cost-effectiveness studies for interdisciplinary care at ALS specialty centers and specialty neurology practices.
  • Develop a model of management that focuses on cost-effective care for patients with ALS during the end of life.
  • Develop a model of cost of care generated by a panel of experts.
  • Undertake cost-benefit studies of unplanned hospitalization.
  • Evaluate outcomes, including cost effectiveness, quality of life and cost-benefit analysis of home care, hospice, PEG and ventilation.

Policy Recommendations

  • Develop comprehensive and equitable policies and reimbursement for in-home care (including ventilation) and long-term care in ALS.
  • Emphasize economic benefits to payers of early and timely interventions to reduce unnecessary hospitalizations:
    • Provide a mechanism of funding for in-home care, including reimbursement for family caregivers' services;
    • Increase funding and cost coverage for long-term care and in-home ventilation costs; and
    • Expand hospitalization coverage (to 48 hours) for surgical interventions such as PEG.

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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.

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