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Patients' perspectives of the substitute decision maker: who makes better decisions?
  1. Komeil Mirzaei1,
  2. Alireza Milanifar2,3,
  3. Fariba Asghari3
  1. 1Department of Surgery, Faculty of Medicine, Tehran University of Medical Sciences, Tehran, Iran
  2. 2Avicenna Research Institute, Tehran, Iran
  3. 3Medical Ethics and History of Medicine Research Center, Tehran University of Medical Sciences, Tehran, Iran
  1. Correspondence to Fariba Asghari, Medical Ethics and History of Medicine Research Center, #23, Shanzdah Azar St, Tehran, Iran; fasghari{at}tums.ac.ir

Abstract

Introduction Substitute decision making on behalf of incapable patients is based on the ethical principle of ‘respect for autonomy’. This study was conducted to assess patients' wishes and preferences in terms of a substitute decision maker and determinants of such preferences.

Methods The authors conducted a cross-sectional study and selected samples randomly from patients presenting at Farabi Eye Hospital clinics who were 18 years of age or older. Questionnaires were completed through interviews.

Results 200 patients between the ages of 18 and 83 years were interviewed. About 52% (N=105) were men and 73% (N=77) were married. Among married patients, the spouse was chosen as the substitute decision maker in only 51% of cases. Single men preferred their father first in 36% (N=9) of cases, while single girls chose their father in 5.6% (N=1) of cases and their most prevalent choice was other unmentioned people (33.3%, N=6). Most patients (93.5%) wished to be asked about their substitute decision maker when hospitalised.

Conclusion The results of this study show that the people we usually consult for decisions concerning patient treatment are significantly different from the patients' preferred substitute decision makers. The authors suggest patients be allowed to choose their substitute decision maker while conscious.

  • Substitute decision maker
  • autonomy
  • competence
  • guardian
  • patient's wishes
  • law
  • informed consent
  • third party consent/incompetents
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Introduction

Although the Iranian culture is different from that in Western countries, studies have demonstrated that Iranian patients highly demand respect for their right to autonomy in decision making.1 2 According to the Islamic Sharia, physicians must obtain consent from the patients or their guardians before taking any measure. Thus, the National Bill of Patients' Rights emphasises observing this issue.3

Theoretically speaking, patients incompetent for decision making reserve the same rights as competent patients to declare their consent for diagnostic and treatment procedures; but in practice, they cannot make full use of this right. Substitute decision making is an effort, although insufficient, to increase patient control over their medical care.

The Islamic Sharia appoints the father or paternal grandfather as the substitute decision maker for children, but no one has been appointed as the guardian for incompetent adults. According to the legal system in Iran, for incompetent adults, decision making is done by a legal guardian appointed by the court. Accordingly, whenever an adult patient is incompetent for decision making, a court needs to be held to appoint someone as the substitute decision maker. Although the law does not explicitly state any gender-based preference for the guardian, in the Iranian law, the mother is not recognised as the compulsory guardian for her child. Furthermore, a woman could be assigned guardianship only with her husband's consent, and this has caused courts to prefer male guardians to female ones.

The legal process is lengthy, and although it lends a solution for legal decisions, it can interfere with the timely provision of medical care. Therefore, the process is not followed in dealing with incompetent patients, and most physicians consult one of the family members. Neither the court, nor the physician can easily decide who is most aware of the patient's true wishes and has the patient's best interest at heart. According to the Iranian law, a lasting power of attorney is not acceptable, and the power of attorney for medical decisions is annulled when the patient is no longer competent. Therefore, legally, the patient cannot choose someone to make medical decisions on their behalf in case they are incompetent.

Enquiries about the patient's opinions in terms of a substitute decision maker could indicate how well the process met their wishes. Also, an assessment of predictive factors and their contribution to patients' choice can be helpful in providing appropriate interventions to observe patients' right to autonomy.

As the first of its kind, in this study we tried to assess the views of Iranian patients about substitute decision making so that we can suggest ways to improve the situation, and ensure that their autonomy is respected.

Methods

In this cross-sectional study, conducted at a teaching referral hospital in Tehran, we enrolled outpatients presenting at the eye clinic. We chose these patients because they are stable and stress-free, and they could consider the questions before replying. Considering the high rate of illiteracy, we conducted interviews and questionnaires were completed by an interviewer. For sampling, we randomly selected 2 days of the week and chose evening patients whose admission number was a multiple of three. The objectives and methods of the study were then explained to the patients, and consenting individuals were enrolled.

During the interview, we explained the concept of incompetence and gave examples of medical situations in which the patient was incompetent for decision making. The patient was asked this question: “If you are too unwell and incapable of making decisions about your medical treatments, who would you prefer the physician to consult about such issues?” The list of responses included eldest child (daughter), eldest child (son), one of the younger daughters, one of the younger sons, spouse, father, mother, brother, sister, grandfather, grandchild, attorney, close friend and other relatives.

Data collection was done during autumn 2007, over five consecutive weeks. Inclusion criteria were a minimum age of 18 years and an ability to communicate in Persian. Patients with cognitive disorders (disorientation to time, places or people) were excluded from the study at the discretion of the interviewer (KM). The study was carried out after the protocol was reviewed and approved by the Tehran University of Medical Sciences Ethics Committee (IRB).

In the analysis, the association of the selected substitute with demographic variables was examined using the χ2 test. According to the Kolmogorov–Smirnov test, the distributions of quantitative variables of age and level of education were not normal, so we used non-parametric tests.

Results

In this study, 200 patients with a mean age of 38.8±14.7 (range, 18–83) years were interviewed; 105 (52.5%) were men and 152 (76%) were married (table 1).

Table 1

Demographics of the interviewees

In choosing a substitute decision maker, none of the participants chose their grandfathers. Forty-one per cent of the participants (n=72) chose a woman to be their substitute. The most common choice for married participants was the spouse with a frequency of 77 people (50.7%) (table 2). Single people first preferred their father or brother (23.3%, n=10) and then their mother (18.6%, n=8).

Table 2

Frequency of choices for a substitute decision maker

We found that gender (p=0.01) and marital status (p<0.001) were important factors in choosing a substitute; 54.7% of married women chose their husbands as the substitute decision maker, and 48.8% of married men chose their wives, and even those with at least one adult son, the rate of this choice was not significantly less (45.3%). For married men, the second most common option (15.6%) was their brother, but for married women, the second highest frequency after their spouse (17.3%) was one of their children (table 2).

Although all single participants had a living parent, less than half (41.9%) chose one of them as a substitute. Single men preferred their father (36%) and single girls chose the ‘other’ option (33.3%) most.

We also studied the choice made by patients over 65 years of age who are more at risk of end-stage disease, and are more likely to need a substitute decision maker. Only one patient had no child over 18 years of age, yet, only 42.9% of them chose their spouse or their eldest child as the substitute decision maker (table 2). Predictably, we observed a significant correlation between patient age and their choice for a substitute decision maker (p<0.001). Table 3 shows the mean age of patients on different options for a substitute decision maker.

Table 3

Mean and SE of patients' age (years) in different groups according to their choice for a substitute decision maker

We also asked participants if they preferred to be asked by their physician about their substitute decision maker for the time they are incompetent; 93.5% (n=187) expressed their wish to appoint one themselves when they were hospitalised.

Discussion

Our study demonstrated that although factors such as age, gender and marital status affect patients' choice of substitute decision maker, there are no strong predictors that can be used in law to establish a hierarchy of substitute decision makers. More than half of our single patients chose someone other than their parents as the substitute decision maker. According to our results, about half of the married individuals chose someone other than their spouse as the substitute decision maker. Similar studies have provided a wide range of rates for choosing the spouse as the substitute decision maker. In the study by Roupie et al on 1089 emergency room patients in France, 40.6% of patients who had a partner preferred their partners to be the substitute decision maker.4 The study by Azoulay et al on 8000 people of the general French population in 2002 reported that 79% of married people chose their spouse as the substitute.5 Lipkin conducted a study on outpatients of the eye clinic of Chicago University, and reported that 67% of married people chose their spouse for this task.6

In our study, the percentage of married men who chose their wives and the percentage of married women who chose their husbands as the substitute decision maker were close and the difference was not statistically significant. This finding may not agree with one's perception of the basic traditional Iranian culture, but this equal trust of men and women in their spouses was also demonstrated in another large study concerning mutual trust in 2002 on 8206 people in 28 province centres in Iran.7

Despite the general reluctance of Iranian judges to appoint a woman as the substitute decision maker, our patients chose an almost equal proportion of male and female substitute decision makers. Even in the case of married men who had an adult son, the chance of choosing their wives as the substitute decision maker was much higher than the chance of choosing their sons or brothers. Also, in choosing a parent, mothers were chosen more than fathers by 24%. As our target population was adult patients, for whom the Sharia has not established a preference for any family member in appointing a guardian, it is important to have changes in the legal system so the judges shall not favour men.

Less than one-third of the over 65-year age group chose their eldest child as the substitute decision maker and, against expectations, more than half of them chose someone other than their spouse or eldest child. This proportion is very low even compared with that reported by High who studied 65–69-year-old people, and found that 61% prefer their eldest child to be the substitute decision maker.8

Our findings suggest that the lasting power of attorney system, compared with the family-member hierarchy legally established in some countries,9 can ensure respect for autonomy more appropriately. Almost all our interviewed patients wished to be asked about a substitute decision maker at the time of hospitalisation. This is in agreement with results reported by Azoulay et al. They found that 90% of people living in France desire to have a substitute when they are incompetent and in the intensive care unit.5

In the legal system in Iran, the attorney in fact has higher priority than the legal guardian in making personal decisions; however, one cannot grant a lasting power of attorney after they become incompetent, and as soon as the client is deemed incapacitated, the power of attorney is revoked on all decisions. To eliminate the problems in appointing a substitute decision maker, and to revive patients' rights in this regard, it is necessary to remove such legal barriers.

The present study had certain limitations. Data for this study was gathered through interviews that could reduce its validity. A significant proportion of single patients chose someone who was not listed in our questionnaire and might be a second-degree relative. This issue warrants further research to understand the wishes of this group of patients. The venue was a referral teaching hospital that provides services to a wide range of patients. However, to increase the generalisability of results, it is necessary to conduct future studies more extensively. The paticipants in our study were young, not at risk of becoming incompetent and therefore interferes with the generalisation of results with those at risk of incompetency during the disease process. Further studies on intensive care unit patients and comparing patients' views with physicians' views in terms of a substitute decision maker would give us a better understanding of such patients' wishes and the accuracy with which physicians fulfil their wishes.

Conclusion

Patients greatly wish to designate their own substitute decision maker, and their choice may not match the one chosen in clinical routines. Therefore, we suggest that patients be asked about their choice for a substitute decision maker upon hospitalisation and that legal acts allow this choice to remain valid even after the patient is incapacitated.

References

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Footnotes

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the Tehran University of Medical Sciences Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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