Patient Participation in Medical and Social Decisions in Alzheimer's Disease

Johannes Hamann, MD; Katharina Bronner; Julia Margull; Rosmarie Mendel, PhD; Janine Diehl-Schmid, MD; Markus Bühner, PhD; Reinhold Klein, MD; Antonius Schneider, MD; Alexander Kurz, MD; Robert Perneczky, MD


J Am Geriatr Soc. 2011;59(11):2045-2052. 

In This Article


One hundred fifty patients fulfilling all inclusion criteria were asked to participate in the survey, of whom one hundred agreed: 29 with aMCI and 71 with mild dementia in AD who were then pooled for the further analyses. For all but one patient, a relative also participated in the survey. All patients' referring physicians were also interviewed. (See Table 1 for details.)

Participation Preferences, Confidence in Decision-Making Abilities, and Decision-Making Capacity of the Patients

The mean rating in the API was 49.8 ± 15.3 out of a possible range from 0 to 100 (range: 17–83), but internal consistency for the scale was below acceptable reliability (Cronbach α = 0.55), so (and to account for the decisional influence of the relatives) the results from the card sorting test were used for the further analyses. Using the card sorting test, which rank in the decision-making hierarchy the patients attributed to themselves was determined.

Table 2 shows that patient participation preferences vary considerably depending on the decision topic. Whereas for social decisions, patients prefer to have the greatest say in decision making, they see it as the physicians' role to play the most important part in drug decisions. Overall, patients want their relatives to have little influence on social or medical decisions.

Regarding patients' confidence in their decision-making abilities (5-point scale ranging from 1 = not confident at all to 5 = very confident) patients rated themselves as rather competent, with the mean score of 3.5 ± 1.02 being significantly above the theoretical (neutral) middle of the scale (P < .001). As stated in the Methods section, patients' decision-making capacity was assessed using a hypothetical case vignette and applying the MacCAT-T. The most marked deficits occurred in the "understanding" section (mean 1.21 ± 1.02, range: 0–4); there was also wide variation in the "reasoning" section (mean 5.5 ± 2.4, range: 0–8) of the MacCAT-T, whereas most patients showed good performance in the "expressing a choice" section (mean 1.8 ± 0.5, range: 0–2). Regarding "appreciation treatment," most patients (n = 80) scored 2 (full appreciation), whereas seven scored 0 and 13 scored 1 (mean 1.7 ± 0.6, range: 0–2). As can be seen in Table 3, the understanding and reasoning sections intercorrelated with the patients' disease severity as measured using the MMSE.

Predictors of Patient Participation Preferences

Patients' confidence in their decision-making abilities and their MMSE scores could predict their participation preferences to a certain extent (Nagelkerke = 0.15). Thus, the more confidence patients had in their decisional capacity (b = −0.49, P = .02) and the higher their MMSE score was (b=−0.13, P = .05), the more involvement in decision-making they desired.

Relatives' and Physicians' Estimates Regarding Patient Participation Preferences

Patients' relatives and referring physicians were requested to give an estimate of individual patient's participation preferences (card sorting) and to state their own preferences as to who should have the greatest say in decision-making about the patient (card sorting).

There were no significant differences regarding the mean ratings of the participation preferences between patients, relatives, and physicians (with the exception that relatives thought that the patients wanted to have a greater say concerning car driving decisions than patients stated themselves; Table 4).

Regarding prediction of individual patient preferences, relatives gave more-accurate estimates of patient participation preferences than the physicians, but the overall prediction of patient participation preferences was poor (Kendall's tau (b)rel-pat = 0.24, Kendall's tau (b)doc-pat = 0.07).

Regarding their own preferences, relatives' preferences differed clearly from patients' preferences. They wanted patients to have significantly lower participation, especially for social decisions, than the patients themselves (Table 4).

Estimates of Relatives and Physicians Regarding Patients' Decisional Capacity

Relatives and patients gave similar ratings of their confidence in patients' decisional capacity, whereas physicians gave lower ratings for both general medical decisions and the hypothetical therapeutic decision (Table 5).

Correlations of Different Ratings of Patients' Decisional Capacity

Patients' ratings of their confidence in their own decision-making capability correlated neither with their relatives' or physicians' ratings nor with any section of the MacCAT ratings or the MMSE (Table 3), although relatives' ratings correlated with physicians' ratings and patient performance on the MacCAT understanding, appreciation, and reasoning sections. The findings for the physicians were similar to those of the relatives, but correlations between overall ratings of patients' decisional capacity and MacCAT ratings were lower than for relatives.


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