The participants in this study were 150 clients of the Massachusetts Department of Mental Health who were 18 years of age or older. The study was conducted from November 2000 through July 2001. A detailed description of the sample and data collection methods is provided in the companion article in this issue of the journal (
+15).
Information about consumers' preferences was obtained by using the HCPQ. Two hypothetical health state scenarios were adapted from standard scenarios in which patients have conditions that prevent them from expressing a choice between different types of palliative care, aggressive treatments, and life support (
+16,
+17,
+18,
+19,
+20,
+21,
+22,
+23,
+24,
+25,
+26). These scenarios were supplemented with questions derived from the Quest to Die With Dignity (
+27), an instrument used to analyze values, opinions, and attitudes concerning end-of-life care. We anticipated that hypothetical health state scenarios would enable us to learn about the advance care planning preferences of persons with serious mental illness, as they have for the general population (
+23,
+24,
+25,
+26).
The two scenarios used in the HCPQ include terminal metastatic cancer with terrible pain and total paralysis with irreparable brain damage. Interviewers read a scenario involving an imaginary patient and asked the study participant to select a treatment choice for this person. Participants were then asked to consider what treatment they would want for themselves in the same situation. A total of 140 participants (93 percent) reported treatment preferences for the imaginary person, and 141 (94 percent) reported treatment preferences for themselves.
The scenarios were preceded by assessments of health status and advance care planning and were followed by assessments of beliefs, values, and end-of-life concerns, as well as interview feedback and follow-up. The HCPQ also contains a psychiatric health state scenario. Because this scenario addresses psychiatric advance directives as distinct from medical advance directives, participants' preferences in this regard are not reported here.
Scenario-based treatment preferences were examined by using chi square analyses and logistic regressions. The logistic regressions examined predictors of congruence between responses to the "self" and "other" scenarios as well as predictors of end-of-life health care preferences. A correlation matrix was used to identify demographic, clinical, functional, advance directive, and end-of-life care preference variables that accounted for variance in dependent variables. Variables associated with significant variance were used as independent variables in regression models. Highly intercorrelated variables were removed from the analysis.
As reported in our other article in this issue (
+15), 67 participants (45 percent) were women, and 137 (91 percent) were white. The mean±SD age of the sample was 42.0±10.4 years. The participants had predominantly been educated through high school or beyond (116 participants, or 77 percent), and most had never married (129 participants, or 86 percent). Primary diagnoses included schizophrenia or other psychosis (99 participants, or 66 percent), mood disorders (major depression and bipolar disorder) (42 participants, or 28 percent), and other disorders (personality disorders or posttraumatic stress disorder) (nine participants, or 6 percent). Ninety participants (60 percent) had at least one medical illness that required ongoing treatment.
+
Preferences for end-of-life care
+Table 1 summarizes the participants' end-of-life care preferences under the scenario of terrible pain from terminal metastatic cancer. Most participants indicated a preference for pain medication even if it caused confusion or an inability to communicate (92 participants, or 66 percent). Nearly two-thirds of respondents endorsed this level of pain medication for the imaginary person as well (90 participants, or 64 percent). Among participants who responded to this scenario, nearly two-fifths (55 participants) expressed concern about addiction to the pain medication (data not shown).
The second part of the cancer scenario describes a patient who asks the doctor "to give him enough pain medicine to die by overdose." Most participants indicated that the doctor should not comply with this request (93 respondents, or 66 percent, under the "self" scenario and 107 respondents, or 76 percent, under the "other" scenario). However, participants were more likely to indicate a preference for an overdose for themselves on request (48 respondents, or 34 percent) than to honor the request of an imaginary person (34 respondents, or 24 percent).
A logistic regression model indicated that preference to receive pain medication that could cause confusion or an inability to communicate was positively associated with age (odds ratio [OR]=1.05, 95 percent confidence interval [CI]=1.01 to 1.10) and negatively associated with a concern about addiction (OR=.29, CI=.13 to .64). In contrast, a logistic regression model indicated that the preference to receive a medication overdose designed to end life was positively associated with a preference for medication that may cause confusion or an inability to communicate (OR=2.62, CI=1.11 to 6.18), a belief that other people should make decisions for a terminally ill person (OR=2.89, CI=1.05 to 7.90), and a preference for the immediate termination of life support (OR=2.30, CI=1.02 to 5.19).
Respondents' preferences under the scenarios of irreversible brain damage and the decision of whether to end life support are summarized in
+Table 2. The participants selected from terminating life support immediately, waiting for a defined period for a change to be detected (seven days or 30 days), indefinite use of life support, or other. Participants who responded "other" provided additional information about this preference and usually indicated "I don't know" (nine respondents). "I don't know" responses were coded as indefinite use of life support. More than two-fifths of respondents (61 respondents, or 43 percent, under the "self" scenario and 64 respondents, or 45 percent, under the "other" scenario) endorsed waiting a defined period. The remainder were nearly equally distributed between terminating life support immediately (40 respondents, or 28 percent, for self and 38 respondents, or 27 percent, for other) and waiting indefinitely (40 respondents, or 28 percent, for self and 39 respondents, or 28 percent, for other).
Participants gave nearly identical reasons for life support choices in relation to both the imaginary person and themselves. Among those who said that they would terminate life support immediately, 20 (48 percent) cited absence of quality of life, loss of personhood, and not wanting to be dependent on a machine or in a vegetative state. Another eight respondents (19 percent) said they did not want to prolong life, that it was "in God's hands," or that one should let nature take its course. Among participants who said that they would wait for a defined period, the most common reason was to allow time for a medical change or a "miracle" (33 respondents, or 48 percent). Finally, of participants who said that they would prolong life support indefinitely, 12 (33 percent) said that everyone deserves to live as long as possible, and an additional seven (19 percent) wanted to allow time for clinical changes or "miracles."
A logistic regression model indicated that the preference to terminate life support immediately (as opposed to waiting for at least one week) was not predicted by participant characteristics. In contrast, the preference to remain on life support indefinitely (as opposed to terminating life support immediately or waiting up to 30 days in order for a change to be detected) was positively associated with the mental health component of the Short Form-12 (SF-12) (OR=1.06, CI=1.02 to 1.10) and negatively associated with presence of a mood disorder (depression or bipolar disorder compared with other disorders) (OR=.25, CI=.08 to .79).
Congruence for the imaginary other person and for the respondent him- or herself was high for both health state scenarios. For the scenario of terrible pain due to incurable cancer, 122 respondents (87 percent) expressed similar preferences for themselves as for an imaginary other person with respect to increasing medication despite confusion and an inability to communicate. Among individuals with noncongruent responses, preferences were split between wanting the medication for themselves but not the imaginary person (ten respondents) and wanting the medication for the imaginary person but not for themselves (eight respondents). In the scenario describing a request for medication overdose to end life, 123 respondents (87 percent) had congruent responses for themselves and for the imaginary other person. However, most individuals with noncongruent responses said that they would choose the overdose for themselves but not for another person (11 respondents), whereas only two said that they would choose it for another person but not for themselves.
Logistic regression models indicated that congruence on the question about taking medication even if it caused confusion was positively predicted by congruence on the question about medication overdose (OR= 6.51, CI=1.91 to 22.24). Congruence on medication overdose was predicted by congruence on taking medication despite its causing confusion (OR= 21.55, CI=3.54 to 131.68) and by a lower mental component score on the SF-12 (OR=.88, CI=.81 to .96).
For the scenario involving total paralysis, brain damage, and little chance of recovery, 121 participants (86 percent) identified congruent life support preferences for themselves and the imaginary person. Among individuals whose responses were noncongruent, preferences were evenly split between waiting longer to terminate life support for themselves (ten respondents) and waiting longer to terminate life support for the imaginary other person (ten respondents). Congruent responses were predicted by older age (OR=1.07, CI=1.01 to 1.13) and the presence of a mood disorder (OR=9.70, CI=1.21 to 77.72).
+
Distress in response to the scenarios
Follow-up information was obtained for 26 of the 29 participants who reacted negatively to at least one of the questions on the HCPQ. The question about terminal cancer distressed seven of these participants, and all the questions distressed five participants. In addition, distress was associated with the psychiatric scenario (eight participants), the entire interview (two participants), concerns pertaining to death or development of a terminal illness (two participants), questions associated with trusting one's physician (one participant), and health care proxy issues (one participant).
Six participants terminated the interview before completion because of distress. Of these participants, two terminated the interview during the question about terminal cancer, two terminated during the question about life support, and two terminated after completing the three HCPQ health state scenarios.
None of the distressed participants required crisis intervention or experienced a psychiatric decompensation. One participant accepted supportive counseling after abruptly terminating the interview, responded well, and was reassessed the next day. No additional interventions were needed.
In this study, mental health consumers were able to engage in medical advance care planning through hypothetical health state preference scenarios. In a scenario involving incurable cancer, nearly two-thirds of individuals with serious mental illness indicated preferences for aggressive pain management, even if it would impair cognition, and one-third indicated preferences for receiving a medication overdose in order to end their life. Moreover, nearly half of participants indicated that they would prefer to receive life support for a defined period, and the remainder was split between immediately terminating life support and maintaining it indefinitely.
Because persons with serious mental illness die at a younger age than the general population, it is important to begin discussions about advance directives with them as outpatients, as has been recommended for the general population (
+57,
+58). Regular review of proxy designations and medical and psychiatric treatment preferences will improve communication and empower consumers, family members, and significant others. Our suggested intervention includes obtaining information about medical and psychiatric preferences, values (
+59), beliefs, and health care proxy designation coupled with the flexibility to complete the directive at once or in parts. Documentation of end-of-life care preferences and inclusion of preferences in medical and case management records can support future decision making for guardians, proxies, family members, and practitioners at a time when a consumer is unable to make or communicate his or her own health care decisions.
This study was funded by grant 35497 from the Robert Wood Johnson Foundation through the Promoting Excellence in End-of-Life Care Program. The authors thank Steve Carreras, Ph.D., Anna Rubley, L.I.C.S.W., Meredith Hanrahan-Boshes, R.N., Sally Neylan Okun, B.S.N., M.M.H.S., Andrea Miller, Ed.M., M.S., and Babs Fenby, Ph.D., for their assistance in identifying participants, conducting interviews, and collecting data for the study.