Age and Ageing Advance Access originally published online on January 28, 2007
Age and Ageing 2007 36(3):274-279; doi:10.1093/ageing/afl179
Medical information and surrogate designation: results of a prospective study in elderly hospitalised patients
1 AP-HP, Hôpital Albert Chenevier and Hôpital Henri-Mondor, Department of Internal and Geriatric Medicine; University Paris 12, Créteil, France
2 AP-HP, Hôpital Henri-Mondor, Surgical Intensive Care Unit; University Paris 12, Créteil, France
3 AP-HP, Hôpital Emile Roux, Geriatric Department, Limeil-Brevannes, France
4 Inserm, Centre d'Investigation Clinique de Créteil Hôpital Henri-Mondor; University Paris 12, Créteil, France
Address correspondence to: E. Paillaud. Tel: 331 49813070; Fax: 331 49813810. Email: Elena.Paillaud{at}ach.ap-hop-paris.fr
| Abstract |
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Objectives: to determine the preferences of French elderly inpatients concerning medical information and surrogate designation in life-threatening situations.
Methods: intention-to-act questionnaire was completed by two geriatricians during a patient interview in the week following admission in three geriatric units in France. The participants were elderly patients (
70 years) with adequate cognitive performance for decision making as assessed by the Mini Mental State Examination. The impact of socio-demographic factors, level of confidence in medical care, cognitive or physical disability on surrogate designation and amount of medical information expected were measured.
Measurements: Impact of socio-demographic factors, level of confidence in medical care, cognitive or physical disability on surrogate designation and amount of medical information expected.
Results: 426 consecutive elderly patients were recruited. 32.6% wanted to receive complete information about their care and 77% declared they would want to be informed if they were in a life-threatening situation. 4.5% reported they would not want any medical information. A family member was designated as surrogate by 73% of the patients. In 28%, a second surrogate was also designated, usually the family physician (22%) or a member of the hospital medical staff (10%). Polytomous logistic regression analysis was used to assess determinants of the amount of information expected and social and medical parameters. MMSE score, the presence of physical disability, a low level of confidence in medicine and the presence of children were identified as independent determinants of a high level of information expectation.
Conclusion: Elderly hospitalised patients expressed a strong desire to receive extensive information and were willing to designate a surrogate in a life-threatening situation. The surrogate was usually a family member alone or with another person, usually a practitioner.
Keywords: surrogacy, ethics, medical information, elderly
| Introduction |
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Understanding patients' preferences for end-of-life care, medical information and surrogacy is of increasing interest [14]. In the United States, advance directives (AD) have been promoted as an effective method for facilitating medical decisions to be taken when the patient is unable to participate [5, 6]. AD documents specify patient preferences about treatment or indicate the name of a surrogate designated to make medical decisions. Studies from the United States [79] indicate that patients most frequently decide to designate a surrogate among relatives. In the United States, where the patient-physician relationship is based mainly on the principle of patient autonomy, these AD procedures are widely accepted. However, in Europe the patient-physician relationship has historically been paternalistic [10]. In France, specific efforts have been recently made to promote surrogacy and to increase patients' autonomy. In 1994, the French Ministry of Health encouraged physicians to obtain informed consent from the patient before all medical procedures. In 2002, a health-care law promoted the designation of surrogacy by competent patients during hospitalisation [11]. This surrogacy designation is especially relevant for older patients who are more likely to suffer from diseases or conditions that may impair decision-making capacity such as delirium, cerebrovascular events and dementia secondary to neurodegenerative diseases. Despite these recommendations, there is little data available on patient preferences about medical information and surrogacy in France [12, 13]. To our knowledge, no specific study has been performed in hospitalised elderly patients.
This study was performed to determine the social and medical factors associated with patient preferences for information and surrogate designation in such a population.
| Methods |
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Patients aged 70 years or older, consecutively admitted to the Albert Chenevier or Emile Roux hospitals over 13 months were informed of the purpose of the study and asked to participate. These patients were transferred from the Accident and Emergency Department of the Henri Mondor University Hospital, a bed tertiary referral centre on the outskirts of Paris. They were hospitalised in three units of geriatric primary care: one in Albert Chenevier hospital and two in Emile Roux hospital of 20, 10 and 16 beds respectively. In these units, care for patients was provided by a multidisciplinary geriatric team: the unit geriatrician, two medical fellows, nurses, physiotherapist, a social worker and a dietitian. Patients included in this study were medically stable. Patients were informed of the purpose of the study in writing and gave oral consent to complete the interview. The study design and procedures were in accordance with the recommendation of the hospital ethics committee. Near terminal medical disorders (e.g. advanced malignancy, heart or pulmonary failure resistant to medical management), loss of consciousness, psychiatric disorders and severe cognitive impairment based on the Folstein Mini Mental State Examination (MMSE) [14] inferior to 20 precluded participation in the study. We also excluded patients who did not speak French fluently.
Within a week of admission, each patient was interviewed by one of two geriatricians. The interview, which lasted around 20 min, distributed between six sections, each evaluating a specific domain. In section 1, demographic data were collected. Section 2 evaluated cognitive, physical abilities and mood state of the patients using MMSE [14], the Katz activities of daily living (ADL) [15], instrumental activities of daily living (IADL) [16] and Geriatric Depression Scale (GDS) [17]. Section 3 evaluated the patient's level of confidence in medical care on a verbal analogue scale ranging from 0 (none) to 100. Section 4 determined the level of information about the diagnostic and therapeutic information the patient wants to receive during hospitalisation on a scale presented in a Lickert form with 4 modes of answers scored from 0 "no need for any information" to 3 "desire of active participation". Section 5 explored how much information about prognosis the patient would want in a life-threatening situation on a scale presented in a Lickert form with 3 modes of answer scored from 0 no need for any information to 2 need to be completely informed. Section 6 asked patients who they would choose as a surrogate to assist physicians in end-of-life decision making. This section consisted of a multiple choice question with six possible answers (medical staff, legally-appointed arbitrator, member of family, general practitioner, another person, do not know). Finally, we noted if the designated surrogate visited the patient during the 8 days following admission.
| Statistical analysis |
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Analysis of variance was used to test associations between these expectations about medical information and surrogacy decisions on the one hand and socio-economic continuous variables, age, and the patient's level of confidence in medical care on the other. When socio-economic variables were categorical, we used the Chi-square test. In the univariate analysis, demographic characteristics found to be associated with patient's wishes about information and surrogacy were entered as covariates in the polytomous logistic regression model. For each variable, the odds ratio for covariate effects was determined with its 95% confidence interval and associated P value. Since the outcome variable was categorical, polytomous logistic regression analyses were used to compute the odds ratios and their corresponding 95% confidence intervals. In polytomous logistic regression, the odds of the groups of patients wishing for information were simultaneously compared to the group of patients who did not wish for any information, the common reference category. STATA statistical software version 7.0 (Stata Corp, College Station, TX) was used for all the analyses.
| Results |
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Among the 1,116 older patients who were admitted to the reference centres during the study period, 426 were included in the study. Of the remainder, 89 (8%) patients declined to participate, 58 (5%) failed to complete the questionnaire fully, 543 (48%) were not eligible because they had major cognitive or psychiatric disorders (38%) or terminal medical disorders (10%). The mean age of the population studied was 83 years, 65% were women, 60% had not finished middle school and 65% lived alone. Participants' socio-demographic characteristics are shown in Appendix 1 (available online http://ageing.oxfordjournals.org). The most frequent acute medical diagnoses at the time of interview were cardiopulmonary diseases (n = 97), neurologic syndromes (n = 57), infectious diseases (n = 51), rheumatic disorders (n = 48), cancer (n = 36) and depression (n = 21). Of the participants, 48% had two and more chronic diseases and 50% received more than four medications. The mean scores on the MMSE, ADL, IADL and GDS scales are presented in Appendix 2 (available online http://ageing.oxfordjournals.org). Twenty-six patients (6%) had severe functional impairment (ADL score
4) and 48 (11%) had severe depressive status (GDS score > 9). Mild to moderate cognitive impairment (MMSE score between 20 and 24) was found in about a third of the population studied. The mean level of confidence in medical care measured on a verbal scale ranging from 0 to 100 was 79 ± 21. MMSE, Mini Mental State Examination; GDS, Geriatric Depression Scale; ADL, Activities of daily living; IADL, Instrumental activities of daily living.
Patient preferences concerning the extent of information they want to receive during their hospitalisation are presented in Table 1. Only 4.5% of patients indicated that they did not want to receive any medical information, whereas 32.6% declared that they wanted to be completely informed and considered their consent necessary before any decision about diagnosis and therapeutic procedures were taken. In addition, 77% of the patients declared that they wished to be informed explicitly if they were in a life-threatening situation. Patient preferences concerning the person they would choose as surrogate to make critical medical decisions if they were unable to do so, are presented in Table 1. Patients would want their surrogate to be a family member, alone or with another person, in 45% and 28% of cases respectively. A single person was designated as surrogate by 67% of the patients. A second associated surrogate was designated by 32% of patients. This associated surrogate was most frequently the general practitioner (68%) and the medical staff (32%). Among the family members, the spouse, children and others relatives were appointed as surrogate in 51%, 75% and 9% of the cases respectively. It is interesting to note that 30% of the relatives did not visit the patient during hospitalisation.
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In the univariate analysis, the level of expected information associated negatively with age (P = 0.015) and with the level of confidence in medical care (P = 0.001) and positively with the score on the MMSE (P = 0.002) and IADL (P = 0.007) rating scales (Table 2). The presence of children was also significantly related to a high level of desired information (P = 0.005). A polytomous logistic regression analysis including the significant variables associated with the level of information expected (Table 3) showed that the level of confidence in medical care and the presence of children were the only independent predictive factors of an intermediate level of expected information (Group 3), whereas MMSE, IADL, level of confidence in medical care and presence of children were all independent predictive factors of the maximum level of expected information (Group 4).
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| Discussion |
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This study, performed in 426 elderly inpatients, was conducted to assess patient preferences about the medical information they would like to be given. A large majority (95%) expressed a strong desire for information concerning their health and medical decisions. Data were collected prospectively using a questionnaire including information about patient wishes, mental and physical performance, the level of confidence in medical care and socio-demographic status. The level of information expected was negatively associated with the level of confidence in medical care and positively with physical and cognitive status, as well as with the presence of children. In addition, these patients reported that they would want a surrogate if they were in a life-threatening situation, 73% choosing a family member as a surrogate, alone (45%) or with another person (28%).
The principle of patient autonomy entitles everyone to accept or refuse any treatment procedure. This is the basis for informed consent which implies a positive collaboration between the doctor and the patient [18, 19]. Few studies have focused on preferences concerning information and decisions about medical care in elderly. However, some studies have showed that older patients had a preference for a passive role in the doctor-patient relationship [2022] as compared to younger patients. Concerning the desire of elderly patients to be informed, studies showed more discrepant results varying from an equal level [21] to a significant lower level than younger patients [23].
In our study, the expectations of elderly patients about the level of information and consent for medical care differed from the traditional paternalistic attitude of French physicians toward patients. The French Ministry of Health recommendations about medical information and increased public knowledge about disease processes have influenced the relationship between the French doctor and the patient. Over the past ten years, the importance of patient autonomy has been increasingly recognised and more open discussion about illness and death is possible [3, 12]. Nevertheless, the discussion about prognosis and treatment with elderly patients may be different when compared to that with younger adults. Elderly people may be suffering from diseases that impair their ability to understand the information given or to make a rational decision [24]. Consequently, in the elderly population it is often necessary to evaluate decision-making capacity and cognitive function before informed consent completion [25, 26]. In the absence of validated techniques or processes for assessing the decision-making capacities of patients, clinicians frequently rely on indirect methods such as brief mental status examinations [27]. We excluded 543 patients (48%) from our study because of a MMSE score below 20. Using such a criterion, we certainly overestimated the decision-making incapacity of the patients. Indeed there were patients with MMSE >10 but less than 20 who did have decision-making capacity. Furthermore, the MMSE value for assessing a person's decision-making abilities is uncertain. Another approach is a specific capacity assessment, which is an evaluation of the person's ability to understand relevant information and appreciate consequences with regard to the specific treatment decision [28, 29].
Interestingly, 96.8% of competent elderly patients from our study agreed to designate a surrogate if they were in a life-threatening situation and 73% wished their surrogate to be a family member. Physicians generally rely on the family to serve as surrogate decision makers and our study demonstrated that this practice correlates well with patient preferences in the elderly. However, we did not determine in our study whether the person designated as surrogate would in fact accept to participate in decision making about their relative's medical care [30]. Surprisingly, 30% of persons designated as surrogates did not visit their relative during hospitalisation.
Our study demonstrated that 32.5% of our population did not designate a unique surrogate but rather two individuals. These surrogate couples mostly associated a family member and a physician. This double designation suggests that either elderly patients often desire a collegial decision or that they represent the remnants of acceptance of paternalistic care. However, this may give rise to divergent points of view between the two surrogates and thus contribute to increased complexity in the decision-making process.
In our study, 35% of the patients chose their general practitioner as a surrogate, either alone or associated with another individual, usually a family member. This implies that the general practitioner (GP) could play an important role by encouraging open discussion concerning illness-related issues within families. The notion of a reference GP was recently reinforced by a French law that strongly encourages every adult to choose and declare a single reference GP as a unique first contact for all medical issues [31], as has been the case for many years in other countries such as the United Kingdom.
Several limitations may affect the interpretation of our results and the extent to which they can be generalised. As the study was restricted to medically stable patients without severe cognitive impairment, the study sample represented only 38% of the patients hospitalised in the three participating acute geriatric units. Another limitation may include potential changes in the surrogate designation. In our study every patient completed the questionnaire only once and no conclusion can be made concerning changes in attitudes or decisions during the hospital stay. Finally, the way the questions were asked could have influenced the answers of the patients. Despite these limitations, this study highlights the importance of taking into account the expectations of the elderly with regard to medical information.
In conclusion, older in-hospital patients mostly express a wish to be informed of and are generally willing to designate a surrogate in a life-threatening situation. This surrogate is usually a family member and sometimes the GP. Further studies in geriatric populations are needed to evaluate the willingness of family members or the GP to act as surrogate decision makers and to determine more accurately the precise role of the reference GP in the decision process.
| Key points |
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- Elderly hospitalized patients express a strong desire to receive extensive medical information.
- Elderly patients are willing to designate a surrogate in a life-threatening situation.
- This surrogate is usually a family member and sometimes the general practitioner.
| Acknowledgements |
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The authors gratefully acknowledge François Lemaire for fruitful discussion.
| Conflict of interest declaration and Financial disclosure |
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There is no conflict of interest; none of the authors have received financial support from consultantships or speakers forum; nor do they have any company holdings (e.g. stocks) or patents.
| Financial disclosure |
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None of the authors have received financial support from consultantships or speakers forum; nor do they have any company holdings (e.g. stocks) or patents.
| Authors contributions |
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Elena Paillaud took part in the design of the study, wrote the study, contributed to the acquisition of the data and analysed the results and wrote the manuscript; Olivier Montagne analysed the results and wrote the manuscript; Edouard Ferrand took part in the writing of the manuscript; Jean-louis Lejonc took part in the design of the study and participated in the analysis of the data; Olivier Bouillanne and Olivier Henry contributed to the acquisition of the data.
| Sponsor role |
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None.
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