I am often asked how a facility caring for demented patients can meet the obligations imposed by a patient bill of rights. Patient rights statements often include the right to be fully informed, to understand one's illness and to refuse treatment, to have privacy, to be free of restraints, to manage one's personal finances, etc. Implementing such rights for the confused person can be difficult, if not impossible. I do not propose to answer the question, but merely to raise it for discussion.
There are several basic concepts that underlie patient rights statements. One is an obligation to recognize the dignity of the person despite his illness.
It is easy to lose track of the essential dignity of a human being when that person's mind seems to be gone, when someone else must meet all his personal needs, or when his behavior is disruptive or degrading. Scrap books, pictures, or tape-recorded family histories allow the patient to reminisce, give the family something to talk about with the patient, and make it easier for aides to relate to the individual as a special person.
Respecting personal dignity can also mean recognizing that seemingly aimless or destructive behaviors may have some meaning or purpose for the patient. One can help the patient substitute a safe behavior for a dangerous or destructive one. For example, running an "errand" or taking a walk can replace unsupervised "escapes" and still have meaning for the patient.
A second concept inherent in a patient bill of rights is that of autonomy. This concept of personal independence is deeply embedded in our culture and laws, but there always exists a tension between autonomy and beneficence - the obligation to care for those at risk. While common sense guides us to a balance in most situations, the patient whose judgment is impaired can present challenges to staff, families, law makers, and ethics committees.
A useful rule of thumb in such dilemmas is to ask one's self whether a specific behavior is harmful, whom it harms, and who needs it to be changed. For example, if a patient refuses to take necessary medication or wanders into a street, he is at risk of harm to himself. If he is driving a car or smoking carelessly, he is at risk of harming others.
Patients who pace, scream, or dump out drawers are not endangering themselves or others, but staff and other residents may urgently need the behavior to stop. Paranoid patients may seriously upset family or staff.
It is often necessary to intervene when a behavior places the patient or others in danger. However, when a behavior is disturbing but not dangerous, it may be possible to alter the environment so that the patient's right to the activity can be preserved without disturbing others.
Finally, families and professional staff together may need to weigh the risk involved in some patient activities against denying a patient any autonomy. For example, a family may decide to allow a patient to wander, despite the risk of a fall or accident, rather than to keep him confined in a geri chair. If and when such decisions are made, they must be discussed openly between family and staff, and must be acceptable to both.
These are difficult issues, and will not be quickly or easily resolved. However, thinking them through will certainly mean better care for patients.