General Hospital Psychiatry xxx (2014) xxx–xxx

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Assessing decision-making capacity at end of life☆ Elissa Kolva, M.A. a,⁎, Barry Rosenfeld, Ph.D. a, Robert Brescia, M.D. b, Christopher Comfort, M.D. b a b

Fordham University, Bronx, NY 10458, USA Calvary Hospital, Bronx, NY, 10461, USA

a r t i c l e

i n f o

Article history: Received 14 October 2013 Revised 21 February 2014 Accepted 25 February 2014 Available online xxxx Keywords: Decision-making Capacity End-of-life Cognitive impairment Assessment

a b s t r a c t Objective: Patients with terminal illness often face important medical decisions that may carry ethical and legal implications, yet they may be at increased risk for impaired decisional capacity. This study examined the prevalence of impairment on the four domains of decisional capacity relevant to existing legal standards. Method: Twenty-four adults diagnosed with a terminal illness completed the MacArthur Competence Assessment Tool for Treatment, a semi-structured measure of decision-making capacity and measures of cognitive functioning and psychological distress. Results: Approximately one third of the sample demonstrated serious impairment on at least one domain of decisional capacity. The greatest proportion of impairment was found on subscales that rely heavily on verbal abilities. Decisional capacity was significantly associated with cognitive functioning and education, but not with symptoms of anxiety or depression. Conclusions: This study is the first to examine decisional capacity in patients with terminal illness relative to legal standards of competence. Although not universal, decisional impairment was common. Clinicians working with terminally ill patients should frequently assess capacity as these individuals are called on to make important medical decisions. Comprehensive assessment will aid clinicians in their responsibility to balance respect for patient autonomy with their responsibility to protect patients from harm resulting from impaired decisional capacity. © 2014 Elsevier Inc. All rights reserved.

Patients with terminal illness are responsible for making important healthcare decisions. Even after their disease has progressed beyond cure, patients may need to establish advanced directives, decide whether to enter clinical trials or accept palliative care interventions, and decide whether to forego potentially curative treatment and enter hospice care [1–3]. Some of the decisions faced by terminally ill individuals can be controversial, such as those regarding physician-assisted suicide (where legal), to reject life-sustaining interventions, and to accept interventions that may directly or indirectly hasten death. Further, many medical interventions provided to patients at end of life can be costly and invasive [4,5]. Even very ill patients are expected to actively participate in their own healthcare decision making [6]. However, as their disease progresses, the decision-making capacity for many patients may deteriorate, whether the result of age, hospitalization, treatment side effects or the disease itself [7–9]. In these situations, an assessment of the patient’s decision-making capacity is required to determine whether the ☆ Author note: Many thanks to the following colleagues for their help in collecting data, providing consultation, and managing the study: Leah Newkirk, Jennifer LordBessen and Maryann Santasiero. The authors would also like to thank the study participants, terminally ill men and women who gave of themselves to help us better understand decision-making capacity at end of life. ⁎ Corresponding author. Department of Psychology, Fordham University, Bronx, NY 10458, USA. Tel.: +1 315 529 4458. E-mail address: [email protected] (E. Kolva).

patient retains the capacity to make “competent” treatment decisions. Capacity assessments provide a mechanism for safeguarding patient autonomy and self-determination while protecting them from the harm that might arise from ill-informed decisions [10,11]. Clinicians are largely responsible for determining when patients are incapable of making competent treatment decisions [12]. In decades past, determinations of decision making capacity were based largely on the diagnosis of a mental disorder alone, or on a global assessment of the patient’s mental status [12]. Many physicians still rely on global assessments of cognitive functioning to assess decisionmaking capacity [13,14], but the accuracy of these simplistic approaches is questionable. For example, one study found that a frequently used measure of cognitive functioning, the Mini Mental State Examination [15], was a modest predictor of decisional capacity but no cutoff score yielded adequate sensitivity and specificity [16]. Thus, critics have argued that cognitive measures such as the MiniMental State Examination (MMSE) are not adequate to evaluate the patient’s specific capacities to understand, appreciate and reason about information related to a particular treatment [17]. In the last two decades, empirical studies of decisional capacity in patients with advanced illness has led to the development of several instruments intended to measure the key functional abilities that correspond to the different legal standards for decision making competence [12]. Although there is no universal legal standard for competence, researchers have identified four components that are

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Please cite this article as: Kolva E., et al, Assessing decision-making capacity at end of life, Gen Hosp Psychiatry (2014), http://dx.doi.org/ 10.1016/j.genhosppsych.2014.02.013

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E. Kolva et al. / General Hospital Psychiatry xxx (2014) xxx–xxx

central to judicial determinations of competence and provide the basis for the model of consent capacity: ability to express a choice (Choice), ability to understand and recall disclosed information (Understanding), ability to appreciate the significance of the decision (Appreciate), and ability to rationally manipulate information into a decision that is consistent with one’s values and preferences (Reasoning) [18,19]. The instruments designed to assess these legal standards provide greater standardization than assessments based solely on a clinical interview and are increasingly considered the “gold standard” of capacity assessment [20]. Research using standardized measures of decision-making capacity has provided insight into patterns of decisional impairment within specific patient populations. Impairment in decision-making capacity has been demonstrated in elderly adults relative to younger adults [21–27], and in those with schizophrenia relative to adults without a psychiatric illness [28–33]. Research on the impact of depression, however, has been more equivocal, as the impact of depression on decision-making is less severe than for many other mental illnesses (i.e., schizophrenia, schizoaffective disorder, bipolar disorder). Although some studies have found impairment in depressed adults relative to healthy adults, these effects may be due to changes in cognitive functioning, such as memory and executive function impairments [28–30,34–37]. Not surprisingly, progressive, disabling neurological disorders that cause cognitive impairment, such as Alzheimer’s disease and Parkinson’s disease, have also been linked to impaired decision-making capacity [16,20,38–45]. Despite the importance of decision making in terminally ill patients, only two published studies have specifically examined decisional capacity in this population. Sorger and colleagues [46] found that hospitalized cancer patients receiving end-of-life care were significantly more impaired on several measures intended to tap ability to provide informed consent when compared to relatively healthy elderly comparison subjects. Physical functioning and age were the strongest predictors of decision-making capacity in this sample. However, there was no association between decisional capacity and other demographic or psychiatric (i.e., depression) variables. Similarly, Burton et al. [47] examined the relationship between cognitive functioning and ability to provide informed consent in a sample of patients receiving hospice care. Study findings supported the relationship between impaired decisional capacity and global cognitive functioning. Overall, the results of these studies indicate that advanced illness is associated with impairments in decision-making capacity, but the precise mechanism underlying these impairments is not known. Moreover, the measures used to assess decisional capacity have been broad-based measures of cognitive functioning; no research to date has specifically targeted the elements of decision making that are relied upon by courts and clinicians. The present pilot study sought to extend this nascent literature by utilizing a standardized method to assess decision-making capacity in patients with terminal illness. Specifically, the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) [48,49] was used to examine decision-making capacity in the four domains directly relevant to existing legal standards: choice, understanding, appreciation and reasoning. This study examined the prevalence of impairment on these four standards of decision-making, as well as associations with measures of cognitive functioning (MMSE) and psychological distress (i.e., depression and anxiety). 1. Method 1.1. Participants Terminally ill patients were recruited from a 200-bed palliative care hospital in the Metropolitan New York City area. All participants had a diagnosis of an incurable, life-limiting illness (primarily stage IV

cancer) and a life expectancy of less than 6 months. This study utilized a convenience sample of patients. Prospective patients who were capable of participating in the study were referred to the investigators by their treating physicians. Hospital records were then reviewed to determine whether patients were English-speaking, alert and responsive enough to be able to comprehend information disclosed during the informed consent process (i.e., able to communicate, not overtly delirious). Because the goal of this study was to assess decisionmaking capacity across a range of abilities, patients with some cognitive impairment were included provided they were able to comprehend the informed consent material and provide seemingly relevant answers to questions. This low threshold for study participation (an “assent” standard) is consistent with both case law and the research literature on informed consent [19,50], as an acceptable threshold for participation in research when the risks are negligible. Interviews were conducted in a private room, at the patient’s bedside. The institutional review boards of all participating institutions approved the study. Twenty-eight patients were approached for participation and 25 patients agreed to participate in the study; one participant elected to discontinue the study before providing sufficient data to permit analysis, resulting in a final sample of 24. The average participant age was 69.2 years (S.D.=13.1; range: 35–88). The majority of the sample was female (66.7%, n= 16) and Caucasian (83.3%, n= 20). Two-thirds of participants completed at least some college (n= 16), and 25% (n= 6) were married. The majority of participants identified as Catholic (58.3%, n= 14). The participants had a range of diagnoses. The most common diagnosis was breast cancer (n= 5, 20.8%). All remaining diagnoses were held by two or fewer participants. Thirteen participants completed the first [artificial nutrition and hydration (ANH)] version of the MacCAT-T (54.17%) and 11 completed the second [endstage renal disease (ERD)] version (45.83%). These two groups did not differ in age, years of education, gender, race, ethnicity, marital status, religion or MMSE score. There were no significant differences on MacCAT-T subscale scores by MacCAT-T version.

1.2. Procedures All patients who agreed to participate were interviewed briefly to elicit relevant demographic information including age, sex, race, ethnicity and education. Decision-making capacity was assessed using the MacCAT-T, a semi-structured, interview-based instrument that consists of a vignette presenting the participant with a medical disorder, the recommended treatments and associated risks and benefits, and potential alternative treatments [19]. Although the MacCAT-T was initially developed to help guide the assessment of actual proposed treatments, researchers have typically utilized hypothetical treatment decisions in order to permit a standardized administration and inquiry [16,41]. In this study, two versions of the MacCAT-T were administered, one addressing the decision to accept or reject ANH for cachexia (severe malnutrition or “wasting syndrome”) and one pertaining to hemodialysis in the context of ERD. In each version, the participant was asked to imagine that he or she had been diagnosed with a terminal disease and that the proposed treatment was necessary to extend life. Participants received inadequate, partial or adequate ratings for each MacCAT-T item (scores of 0, 1 and 2 respectively), and these scores were summed to generate subscale scores for Understanding (0–6), Appreciation (0– 4), Reasoning (0–8); and Choice (0–2). Prior research using the MacCAT-T in a sample of adults with psychiatric illness has demonstrated a high degree of inter-rater reliability and test-retest reliability over a 1-month period [49,51], although reliability was not assessed in the present study. Past research has also demonstrated a moderate correspondence between MacCAT-T scores and physician’s judgments of decisional capacity [52,53].

Please cite this article as: Kolva E., et al, Assessing decision-making capacity at end of life, Gen Hosp Psychiatry (2014), http://dx.doi.org/ 10.1016/j.genhosppsych.2014.02.013

E. Kolva et al. / General Hospital Psychiatry xxx (2014) xxx–xxx

Participants also completed a measure of general cognitive functioning, the MMSE and the Hospital Anxiety and Depression Scale (HADS) [54]. The MMSE assesses orientation, memory, language, constructional praxis and attention and is frequently used for the purpose of assessing decisional capacity [14] and determining eligibility to provide informed consent to participate in clinical research [13]. The HADS is a 14-item self-report measure of anxiety and depression symptom severity developed for use in medically ill populations. The HADS does not include the somatic symptoms that typically confound the assessment of distress in medically ill patients and has demonstrated strong reliability and validity in a broad range of medically ill populations [55]. 1.3. Statistical analysis Descriptive statistics were calculated for demographic, decisionmaking and psychosocial variables. Demographic differences between the two alternate versions of the MacCAT-T, and between decisionmaking capacity and psychosocial variables were assessed using t test and chi-square statistics. Correlation coefficients were used to examine the relationship between performance on the individual MacCAT-T subscales and measures of general cognitive functioning (MMSE) and psychological distress (HADS). The authors of the MacCAT-T specifically avoided establishing cut scores for the MacCAT-T in order to prevent clinicians from equating a certain level of decision-making with the legal determination of competence or incompetence [16]. However, in this study, there was no such risk. Past studies of the MacCAT-T have established cut scores to classify levels of decisional impairment. Thus, scores on the MacCAT-T were used to classify participants as impaired, borderline, or unimpaired on each of the four subscales. The cut scores used in this study were based on those used with the clinical research version of the MacCAT by Kim and colleagues [37] and modified based on the distribution of scores in the sample. On the Understanding subscale, scores in the 0 to 2 range were considered indicative of serious impairment whereas scores of 5 or greater were considered unimpaired and scores in between these two extremes were considered “borderline.” On the Appreciation subscale, scores below 2 were considered impaired, scores of 2–3 were classified as borderline and scores of 3 or greater were considered unimpaired. On the Reasoning subscale, scores below 4 were considered to be impaired, scores of 4–7 were considered borderline and scores of 7 or greater were considered unimpaired. Finally, a score below 1 on the Choice subscale indicated serious impairment, scores ranging from 1–1.99 indicated borderline capacity and a score of a 2 indicated unimpaired functioning. 2. Results Participant scores on the MacCAT-T are displayed in Table 1. All participants were able to express a treatment choice, only two participants (8.3%) had borderline capacity, the remainder were unimpaired (n=22, 91.7%). More than half of the participants (n= 14, 58.3%) indicated a preference for life-prolonging treatment (ANH or ERD) whereas 10 (41.7%) opted to refuse treatment. However, most participants had at least some difficulty recalling relevant information, as only four participants (16.7%) obtained a score of 5 or greater on the Understanding subscale (i.e., were unimpaired) and six (25%) had serious impairment in retention and recall (i.e., obtained an Understanding score below 3). Participants had less difficulty with the Appreciation questions, as the majority of participants (n=19; 79.2%) were unimpaired on this subscale (i.e., scores of 3 or 4), whereas only one individual (4.2%) exhibited serious impairment (i.e., obtained an Appreciation score below 2). Finally, most participants (62.5%) had difficulty with the Reasoning subscale items, as only nine participants were unimpaired (i.e., obtained a Reasoning score of 7 or 8), whereas four participants (16.7%) obtained Reasoning scores of 4 or below (i.e.,

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Table 1 Demographic characteristics of sample Variable

Total Sample M (SD)

Age Education (years)

69.2 (13.1) 14.9 (3.5) N (%)

Gender Male Female Race White Black Other Ethnicity Hispanic Not Hispanic Marital status Married Single Divorced/separated Widowed Religion Catholic Protestant Jewish Baptist Other None Religious Yes Somewhat No Diagnosis Breast cancer Liver cancer Lung cancer Ovarian cancer Prostate cancer Hodgkin’s disease ALS Bladder cancer Colon cancer Esophageal cancer Adrenal cancer Myelofibrosis Pancreas cancer Renal cancer Other

8 (33.3) 16 (66.7) 20 (83.3) 3 (12.5) 1 (4.2) 2 (8.3) 21 (87.5) 6 (25.0) 10 (41.7) 4 (16.7) 3 (12.5) 14 (58.3) 1 (4.2) 4 (16.7) 1 (4.2) 1 (4.2) 1 (4.2) 11 (45.8) 3 (12.5) 8 (33.3) 5 (20.8) 2 (8.3) 2 (8.3) 2 (8.3) 2 (8.3) 2 (8.3) 1 (4.2) 1 (4.2) 1 (4.2) 1 (4.2) 1 (4.2) 1 (4.2) 1 (4.2) 1 (4.2) 1 (4.2)

serious impairment). In total, one third of the sample (n=8) was impaired on at least one of the four subscales and three (12.5%) were impaired on two subscales; no participants were impaired on three or more subscales. However, the Understanding, Appreciation and Reasoning subscales were significantly correlated with one another (r'sN.40, P=.03 for each). However, none of the MacCAT subscales were significantly correlated with ability to make a choice (r’s b .20; p=n.s.). The average MMSE score was 26.17 (S.D.=3.72; range: 17–30), which falls within the average range of functioning. However, five participants (20.83%) fell within the impaired range of functioning (b24). Sample mean scores on the HADS were relatively high, with a mean of 8.42 (S.D.=5.0, range: 0–20) on the depression subscale and 7.12 (S.D.=5.4, range: 0–20) on the anxiety subscale. Half of the sample (n=12) reported clinically significant depressive symptoms (≥8 on the depression subscale) and 42% (n= 10) reported clinically significant anxiety symptoms (≥8 on the anxiety subscale). 2.1. Correlates of decision-making capacity Correlational analyses revealed few significant associations between MacCAT subscale scores and measures of cognitive (MMSE and years of education) and psychological functioning [HADS Anxiety

Please cite this article as: Kolva E., et al, Assessing decision-making capacity at end of life, Gen Hosp Psychiatry (2014), http://dx.doi.org/ 10.1016/j.genhosppsych.2014.02.013

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subscale (HADS-A) and HADS Depression subscale (HADS-D); see Table 2]. Specifically, the Understanding subscale was significantly and strongly correlated with performance on the MMSE, r= .60, P= .002, and years of education was significantly correlated with the Reasoning subscale, r= .44, P= .04. Although a number of other moderate effect sizes were observed (.20–.39), these associations were not statistically significant. None of the MacCAT subscales were significantly associated with the HADS anxiety or depressive subscales. (See Table 3.) A second level of analysis focused on differentiating participants who demonstrated impaired decision-making on any MacCAT subscale (n= 8; 33.3%) from those who did not. Only two variables significantly differentiated these two groups, MMSE score, t(df=22) =4.56, p= .002, d =1.94, and years of education, t(df= 21)=3.57, p= .02, d =1.55. No other demographic (gender, age, race/ethnicity) or psychological (HADS-A, HADS-D) variable significantly differentiated these two groups. A logistic regression analysis was used to determine whether these two variables provided a unique contribution to the prediction of impairment. This model, which explained 48% of the variance in impairment classification, yielded a significant effect for MMSE, B=−0.56, p= .04, OR=0.57, but the incremental utility of education did not reach statistical significance, B=−0.61, P= .06, OR=0.54. 2.2. Analysis of treatment choice A final level of analysis addressed whether the presence of clinically significant depressive symptoms (HADS-D N8) or decisional impairment (impairment on any MacCAT-T subscale) impacted patient decisions to accept or reject life-prolonging treatment. Although a somewhat greater proportion of depressed patients opted to reject treatment in the hypothetical vignette compared to those without significant depression (50% versus 33%), but this discrepancy was not significant, χ 2 (2, N= 24)=0.69, p= .41, Φ= .17. Conversely, patients with some decisional impairment were more likely to desire treatment compared to those with no decisional impairment (75% versus 50%), but this association also failed to reach significance, χ 2 (2, N= 24)=1.37, p= .24, Φ= .24. 3. Discussion Understanding the decisional capacity of terminally ill patients is crucial for improving clinical consultation at end of life. Even in the final days or weeks of life, terminally ill patients may face important – even life-or-death – medical decisions such as whether to sign a donot-resuscitate order or accept life-prolonging interventions. Given the potential legal and financial ramifications of these decisions, the

Table 2 MacCAT-T scores Capacity measure and score Choice (score range 0–2) 2 1 0 Understanding (score range 0–6) 5–6 3.01–4.99 0–3 Appreciation (score range 0–4) 3–4 2 0–1 Reasoning (score range 0–8) 7–8 5–6 0–4

N

%

22 2 0

91.7 8.3 0.0

4 14 6

16.7 58.3 25.0

19 4 1

79.2 16.7 4.2

9 11 4

37.5 46.8 16.7

Table 3 Correlations between MacCAT-T subscales, cognitive and psychosocial variables

Choice Understanding Appreciation Reasoning

MMSE

HADS-A

HADS-D

Education

−.06 .60⁎⁎ .12 .26

.06 −.02 .10 .17

.15 .15 .32 .04

.04 .30 .39 .44⁎

Note: ⁎Pb.05 ⁎⁎Pb.01

analysis of decision-making capacity in relation to the commonly used legal standards for identifying decisional competence is particularly important [18]. Early studies of decision-making capacity in terminally ill patients have highlighted the high prevalence of impaired decisional capacity, but have called for the use of structured, validated measures of decisional capacity [46,47]. The present study is the first to employ the MacCAT-T, a measure of decisional capacity that specifically targets common legal standards, in a terminally ill sample. As expected, study participants demonstrated a range of decisionmaking abilities across the MacCAT-T subscales. Whereas nearly all participants were able to express a treatment decision, higher rates of impairment were found on subscales that required more complex cognitive abilities such as learning and memory, reasoning and application of new information in the context of personal goals and values. However, a surprisingly large proportion of participants (75%) did not evidence significant decisional impairment on any of the MacCAT subscales. These findings echo the results found in studies in other medically ill populations including Alzheimer’s disease [39], malignant glioma [56], and mild cognitive impairment [40]; merely having a life-limiting illness is not pathognomonic for impaired decisional capacity. However, when present, decisional impairment may impact treatment choice. The present study demonstrated a greater (though not significant) likelihood of accepting life-prolonging treatment among those with some decisional impairment. Greater health care costs, resulting from increased medical intervention, in the final weeks of life are associated with greater physical distress and worse quality of death [5]. Patients with impaired decisional capacity may be more likely to make decisions that place them at greater risk for harm. Clearly, the results of this study highlight the importance of both systematically assessing decision-making capacity as well as the impact of impairment on end-of-life treatment decisions. The standards of capacity represented in the MacCAT-T are often described as hierarchical with regard to the amount of protection afforded by each test [57]. The Choice standard is generally regarded as the least restrictive, placing a premium on autonomy but with relatively little opportunity to differentiate impaired and unimpaired decision-making. Understanding is typically thought to require more cognitive demand and may be necessary but not sufficient for adequate Appreciation and Reasoning [58]. In the present study, the patterns of impairment on the three “higher level” MacCAT-T subscales suggest that these subscales are not necessarily hierarchical in nature, as some participants were impaired on the Understanding subscale but appeared to have intact Appreciation and/or Reasoning abilities. However, the absence of well-established cut-scores for classifying decisional capacity as “impaired” limits conclusions about the relationship between the subscales and the underlying legal standards measured. This caveat notwithstanding, the patterns of decisional capacity observed in this study highlight the importance of a multi-faceted assessment of decision making in clinical evaluations. Unfortunately, most clinicians who assess decision making in their patients rely solely on gross measures of cognitive functioning or unsystematic measures of understanding, typically by asking their patient to repeat back information previously disclosed or indicate agreement [59].

Please cite this article as: Kolva E., et al, Assessing decision-making capacity at end of life, Gen Hosp Psychiatry (2014), http://dx.doi.org/ 10.1016/j.genhosppsych.2014.02.013

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Our analyses also indicated that Understanding was the only MacCAT-T subscale that was significantly correlated with a measure of current cognitive functioning (MMSE). This association is not surprising, as both the MMSE and Understanding subscale rely primarily on attention and memory. However, this significant correlation highlights the limited nature of Understanding as a sole or primary technique for assessing decisional capacity. Conversely, while the MMSE may be useful for identifying impaired recall, it was unrelated to performance on the remaining MacCAT-T subscales. Thus, relying solely on gross measures of cognitive function to assess capacity [13,14] likely results in a failure to identify impairment in other domains of decision-making. The association observed between years of education and the MacCAT Reasoning subscale also raises several interesting questions given the evidence to suggest that education corresponds to both overall cognitive abilities as well as “cognitive reserve” in patients at risk for cognitive impairment [60–62]. One interpretation of this finding is that cognitive reserve buffers the effects of illness on decision-making. Alternatively, the Reasoning and Understanding subscales, which rely heavily on verbal fluency in their assessment of decision-making, may fail to recognize intact decision-making in individuals with limited verbal skills. This explanation is consistent with previous research indicating that verbally based measures of decision-making are less accurate than more behavioral indices for individuals with severe mental illnesses [63]. Finally, the absence of any significant association between MacCAT subscales and measures of depression and anxiety warrants attention. This finding is largely consistent with past studies of the impact of psychological distress on decisional capacity, in that the impact of depression and anxiety is generally dwarfed by the impact of cognitive impairment and severe mental illness [28–30,34– 37,53,64]. It may be the case that depression and anxiety only exert an impact on decision-making when the symptoms become particularly severe (e.g., a psychotic depression), and such individuals are rarely found in clinical research. Although our analysis indicated a small, and non-significant association between severe depression and both Appreciation and treatment choice (with depressed participants somewhat more likely to reject treatment compared to nondepressed participants), further research is clearly needed to better understand the impact of depression on decision-making processes and outcomes. This study is not without limitations. In order to establish acceptability and feasibility of the MacCAT-T in this setting, we solicited a convenience sample of terminally ill cancer patients who were identified by their treating physician as likely capable of participating in the study (i.e., alert, verbal). This likely resulted in a more cognitively intact sample than would have been found had more systematic and inclusive screening procedures been used (e.g., sequential admissions to the facility). Similarly, patients who were seen as seriously depressed or agitated by the treating physician were unlikely to be recommended for study participation, which likely reduced the severity of psychological symptoms in this sample. In short, this sample likely underestimates the frequency of decisional and cognitive impairment. The absence of established cut-scores for the MacCAT-T also limits the conclusiveness of our classifications of patients as having impaired decision-making abilities. We based our classifications on the cutscores previously utilized in other medically ill samples [13], but the MacCAT-T developers deliberately avoided recommending cut-scores because of the complexity in assessing decisional competence. Other researchers have typically based cut-scores on a comparison to physically healthy samples, or utilized clinician judgments about decision-making capacity. Unfortunately, the pilot nature of this study precluded this approach. Finally, this study did not include an analysis of the inter-rater reliability of MacCAT-T scores, and included a very small sample size. The small sample size may have resulted in

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insufficient power to detect effects between the MacCAT-T subscale scores and categories of decisional impairment on the MacCAT-T, and their relationship to cognitive functioning and psychological distress. These limitations, which reflect the logistical challenges of conducting research in a palliative care setting, nevertheless limit the conclusiveness of study findings. Despite these limitations, this study represents an important first step in applying systematic methods of assessing decision-making, that are directly relevant to existing legal standards, to important decisions faced by terminally ill patients. The findings, while preliminary, substantiate concerns for the adequacy of traditional methods of assessing decisional capacity, and highlight the need for further research. Future studies that target a larger, and more representative sample of terminally ill patients, and include both a clinician assessment of capacity and an appropriate comparison group, will allow for a more complete understanding of decisionmaking capacity in terminally ill patients. Such research is critical to both protecting the rights of terminally ill patients, while simultaneously protecting impaired decision makers from potential harm. References [1] Rosenfeld B, Jacobsen CM. Forensic issues at the end of life. In: Goldstein AM, editor. Forensic psychology: emerging topics and expanding roles. New York: Wiley; 2006. p. 661–80. [2] Casarett DJ, Karlawish JHT, Hirschman KB. Identifying ambulatory cancer patients at risk of impaired capacity to consent to research. J Pain Symptom Manage 2003;26:615–24. [3] Emanuel L, Scandrett KG. Decisions at the end of life: have we come of age? BMC Med 2010;8:57. [4] Chastek B, Harley C, Kallich J, Newcomer L, Paoli CJ, Teitelbaum AH. 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Please cite this article as: Kolva E., et al, Assessing decision-making capacity at end of life, Gen Hosp Psychiatry (2014), http://dx.doi.org/ 10.1016/j.genhosppsych.2014.02.013

Assessing decision-making capacity at end of life.

Patients with terminal illness often face important medical decisions that may carry ethical and legal implications, yet they may be at increased risk...
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