Social and ethical issues in home-based medical care

Patients whose illness and frailty are severe enough to render them homebound are usually dependent on others for care. Individual autonomy is often restricted by financial and social limitations. The determination of capacity is extremely complex, and in many cases no “gold standard” can be used to make objective decisions about the presence or absence of capacity. Lines of legal responsibility are often unclear or absent, making the designation of “neglect” difficult. Such relationships are often under a good deal of stress, and many have an extensive and disputed history. “Abuse” is essentially a criminal charge, a very serious allegation likely to disrupt relationships among patient, caregiver, and medical professional. Decision-making about life-sustaining treatment can be complex, especially when a patient’s capacity is in doubt or clearly lacking. Advance directives are imperfect tools that attempt to preserve the voice of a person who is no longer able to speak meaningfully about life-and-death choices. Their definitions, regulations, and nomenclature vary from jurisdiction to jurisdiction. Home-based medical clinicians must routinely make sophisticated judgments about (1) whether the patient (and sometimes the surrogate) has decisional capacity, (2) whether current arrangements are illegal and could be improved by legal intervention, and (3) how best to honor the patient as a person when suffering and other burdens are rising and prognosis and other benefits are falling.