Phantoms of home care: regulatory constraints on home care nurse care management of persons with Alzheimer's disease.

Early indications are that the Medicare home health prospective payment system has controlled Medicare home health expenditures. However, studies indicate many unresolved questions about whether the prospective payment system improves patient quality of care and is cost-effective. The question persists as to whether the prospective payment system has intensified the Medicare home health benefit's historic focus on acute medical care, ignoring the needs of persons with chronic diseases. The article reviews effective home-based palliative care interventions and presents the views of 7 home health care nurses regarding the impact of Medicare requirements on their care decisions for one chronic disease population, patients with Alzheimer's disease. The nurses identify Alzheimer's disease symptom management and psychosocial needs as phantoms, omnipresent below the surface but not attended to by home care clinicians. Nurse coping strategies are discussed. The article asserts that the current failure to simultaneously address the cost and quality-of-life issues of persons with Alzheimer's disease who are cared for at home is analogous to the end-of-life care situation Medicare confronted in the 1970s prior to the Medicare hospice demonstration program, which preceded the Hospice Medicare Benefit. The article asserts that a similar demonstration is appropriate to determine how the prospective payment system might better address quality of life and costs of persons with Alzheimer's disease who are cared for at home.