Treatment preferences
Psychotropic medication. Eighty-six participants (81 percent) listed specific preferred medications, 68 (64 percent) listed medications they would refuse, and no one rejected all psychotropic medications. Participants generated their own lists of medications, which were later coded into categories shown in
Table 1. Antidepressants and atypical antipsychotic medications were the most frequently listed preferred medications. First-generation antipsychotic medications topped the list of medications that participants refused, nearly half of which was haloperidol. Negative side effects were the most common reason for refusing particular medications. Most individuals were willing to try medications not listed in their directive if side effects could be eliminated or their physician recommended it.
Hospitals and alternatives to hospitalization. About two-thirds of participants (68 percent) expressed a preference for hospital alternatives over hospitalization, particularly alternatives provided by professionals rather than family or friends, as shown in
Table 2. Participants selected alternatives from a preestablished list. Although most participants preferred hospital alternatives, nearly all respondents recognized the need for hospitalization in some circumstances and specified at least one preferred hospital. About half specified at least one hospital to avoid, most frequently the state hospital. Participants cited poor care as the most common reason for wanting to avoid a given hospital.
ECT. Nearly three-quarters (72 percent) indicated refusal of ECT, as shown in
Table 3. Of those consenting to ECT (N=17), three selected instructions about the number and voltage of administrations.
Emergency response including seclusion, restraint, and medication. Ninety-four participants (89 percent) selected at least one method of deescalating crises from a preestablished list, and most participants wanted to have privacy or to be offered time out, as shown in
Table 3.
Participants generally ranked medication, especially in pill form, as preferred over seclusion or seclusion plus restraint. Participants most frequently reported increased psychiatric symptoms, fears, and physical problems as reasons for their preferences.
Nontreatment personal care instructions
The proportion of participants who specified instructions about nontreatment personal care instructions are shown in
Table 5.
People to contact and people not authorized to visit during hospitalization. Most participants (81 percent) specified individuals to be notified of hospital admissions. Parents were most frequently listed, followed by siblings, friends, clinicians, spouses, and children. Only one-quarter of participants (27 percent) specified people not authorized to visit during hospitalization, most often first-degree relatives, friends, or spouses.
Assistive devices. Slightly more than half of the participants (59 percent) selected, from a preestablished list, at least one assistive device to be retained during hospitalization. Almost all were corrective lenses or dentures or plates.
Persons to notify about care of finances, dependents, and pets. About half of the participants (48 percent) specified someone to manage finances during hospitalization. Most often case managers were listed, followed by parents, siblings, friends, and spouses. Few participants listed someone to contact to care for pets (14 percent) or dependents (6 percent).
Dietary preferences. Forty-two percent of participants selected dietary preferences from a preestablished list. The most common foods to be avoided were sugar, salt, meats, acidic foods, and fats.
Appointment of a surrogate decision maker. Just under half of the sample (46 percent) appointed a surrogate decision maker. Most often friends were listed, followed by parents, siblings, spouses, and children.
"Other" instructions. Thirty percent of participants specified additional instructions, most often treatment for medical conditions or wanting to have someone to talk to during a crisis, to be able to sleep, or to do art or other expressive activities.