Many ventilator-assisted children and adults remain needlessly in acute care centers at enormous costs in economic and human terms. They cannot leave institutions because the options they require in the community either do not exist or cannot help them due to inadequate expertise or reimbursement. Thus, these survivors remain in expensive care units, at costs in 1982 exceeding $& million per year per patient. More current and specific dollar-cost figures comparing hospital (ICU) vs home care costs and cost analysis outcomes from home-health care organizations are needed. Such data are not available from any one reliable source. In acute care facilities, these patients do not receive the needed educational preparation and functional training required for a successful return into the community. Their acute caregivers become frustrated and their families undergo destructive stress. Acute care hospitals are never adequately reimbursed for these unnecessary and prolonged hospitalizations. This situation has become critical during the era of cost-containment and prospective payment.
Selected ventilator-assisted children and adults have gone home where they found a lack of adequate funding, comprehensive services, or case-manage-ment coordination. Few have gone home on waivers from current reimbursement regulations. Those “ex-ceptions-to-the-rules” have been made ever since President Reagan focused national attention upon Katie Beckett, a ventilator-assisted child, whose home care potentially resulted in major cost savings to the government if bureaucratic red tape could be eliminated (New York Times, 11/11/81). The waiver concept permits funding for care at home or in the community provided that the cost does not exceed that of the institution. For a few lucky families, the waiver has eliminated a co-payment for home care that would have reduced them to the poverty level before any public funds would have been used. Many Americans are not able to obtain such a waiver because their states have not applied for them. Other families have found that the bureaucracy introduced by the waiver is often worse than the situation before.
The Funding Issue
Currently, the lack of an established funding mechanism is a major barrier to the creation of a systems approach to community-based services for ventilator-assisted people. Private and public reimbursement authorities consider each case as an exception; they are concerned about a precedent “opening Pandoras box.” Although they cooperate on a case-by-case basis, understanding of the requirements of the care at home is often inadequate. The limitation of cost-reimburse-ment at home by “policy” creates an unreasonable compromise on patient safety, quality of care, and an enormous economic burden on the family and community-based services. As a result, health care institutions cannot discharge the patient because the family cannot afford the difference in cost. The delay in decision-making depletes thousands of dollars that can be better spent at home for a longer period of time at a cost savings of 70 percent.
Although the cost-reduction potential is enormous with appropriately designed options, each program must be funded 100 percent. At times, it may be necessary to combine funds from multiple sources, both private and public. This becomes more difficult when self-insured business or labor groups have no “policy” for this situation, and unemployment (loss of insurance) becomes a reality. Once funds are appropriated, there is an enormous problem with cash flow. Self-employed nurses and vendors of equipment are not paid in a timely fashion. This results in frustration, disatisfaction, and unwillingness to participate. Further, costly practices include inattention to errors in billing and reduplication of charges. Some reimbursement policies will not pay for respiratory therapy visits and demand costly R.N. visits (often reimbursed at a rate higher than that paid for a doctors visit). Families have been given an enormous burden because of these funding dynamics. Often, they have excellent insights into cost-savings, but they are not permitted input into the design of the reimbursement mechanisms.
The Quality Assurance Issue
Although the ventilator-assisted person can return to a better life in the community, care is complex and presently uncoordinated. Services come from a variety of sources: health care institutions, private and public funding agencies, voluntary organizations, and for-profit and not-for-profit health care providers and equipment vendors. There is great frustration because of inadequacy of service delivery and inefficiency of the system. Of grave concern is risk because of an unsafe program due to poor planning, operation and coordination; inadequate training of caregivers; and lack of reevaluation of program and patient. A quality assurance mechanism is needed to attend to these details. Above all, this is essential for the safety of the patient. It makes no sense to send home a patient to risk loss of function or life by a preventable accident in a poorly operational program. Furthermore, there is an enormous cost-savings potential for trained nonprofessionals who can supplement care given under the supervision of professionals. Finally, the malpractice issue always looms as a threat to limit the economic potential savings of home care.
Quality assurance is an issue that can be accomplished by each individual organization with standard procedures and evaluation processes. Home care requires so many different organizations that the quality assurance of the overall system is beyond the scope of any one existing group. A mechanism of accountability to assure the appropriateness of the home care prescription and its delivery must be established. Elements of quality assurance include care-monitoring and evaluation of outcomes. With accumulated experience, research can determine optimal management, and a suitable system can be put in place.