This study examines the policies and procedures that home health care agencies have developed to handle the incapacitated patient and life-sustaining treatment decisions. Data collected from a survey of 154 home health care agency directors and interviews with 92 local agency staff (including nurses and social workers) and 67 patients confirmed that directors, staff and patients agree that patients are informed about their legal rights. When asked about specific rights, fewer patients were aware of their right to execute an advance directive, and even fewer patients had actually executed one. Only 67 percent of agencies reported having existing policies on advance directives and life-sustaining treatment decisions, whereas 41.5 percent had policies on how to handle the patient with questionable decision-making capacity. Consistent policies are needed for social workers, nurses, and other staff to handle such difficult ethical dilemmas. A review of specific agency policies is presented with recommendations for future policy changes and development.

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