1 Laboratoire dEthique médicale et de Médecine Légale et Institut International de Recherche en Bioéthique (IIREB), Faculté de médecine de Paris 5, 45 rue des Saints Pères, 75006 Paris, 2 Hôpital Saint Vincent de Paul, 7482 Avenue Denfert Rochereau, 75674 Paris Cedex 14 and 3 Hôpital Edouard Herriot, 5 Place dArsonval, 69003 Lyon, France
Correspondence and offprint requests to: Dr Isabelle Fauriel, Laboratoire dEthique médicale et de Médecine Légale, Faculté de médecine de Paris 5, 45 rue des Saints Pères, 75006 Paris, France. Email: isabelle.fauriel{at}wanadoo.fr
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Abstract |
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Methods. We carried out semi-directed interviews with nephrologists from all the paediatric nephrology centres in France and the French-speaking regions of Switzerland and Belgium.
Results. We interviewed 46 paediatric nephrologists. Most were aware that decisions relating to LST are necessary and based on the assessment of the child's quality of life. According to them, decisions are not based on scientific criteria, but on the capacity to accept handicap, the family's past experiences and the doctor's own projections. They report that their task is particularly difficult when their action may contribute to death (withdrawal of treatment or acceleration of the process). They feel that their duty is to help the families in the acceptance of the doctors decision rather than to encourage their participation in the decision-making process (DMP).
Conclusions. This article shows that paediatric nephrologists differ in their opinions, mostly due to their own ethical convictions. This observation highlights the need to establish common rules taking into account the views held by doctors. This is the only way to establish an ethical code shared by professionals.
Keywords: dialysis; ethics; life-sustaining treatments; nephrology; paediatrics; treatment withholding or withdrawal
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Introduction |
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In a previous article [4], we studied the criteria used for LST decisions and identified positive criteria in favour of the continuation of care (isolated renal insufficiency occurring outside the neonatal period, child well integrated in the family or in an adapted social structure) and negative criteria favouring decisions to withdraw treatment (neonatal renal insufficiency, incurable extrarenal disease, severe neurological handicap affecting relationships, impossibility of providing social help or finding an adapted care centre after extensive research by a social assistant with expertise in the field, etc.). We also highlighted the complexity of such decisions and the need for parents and the paramedical team to participate in the decision-making process (DMP). This work, together with that of the French Society for Paediatric Nephrology (SFNP), aims to contribute to the establishment of guidelines made for and by the professionals themselves.
The law was changed on 22 April 2005, making it all the more important to lay down guidelines, as decisions to limit or to withhold treatment have been decriminalized for treatments maintaining life in conditions judged unreasonable. The new law also states that the family must be notified. Transparency is obligatory, because all decisions must be recorded in the patient's medical file [5].
In this article, we consider the opinions for doctors and identify elements of ethical tension that must be resolved by professionals if we are to develop appropriate guidelines.
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Methods |
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All 31 French-speaking paediatric nephrology centres were included: 25 in France, 2 in Switzerland, 3 in Belgium and 1 in Luxembourg.
The study was carried out by an investigating doctor during 2001. We contacted all the 50 doctors holding permanent positions in the 31 centres and carried out semi-directed, face-to-face interviews with those who accepted. These interviews were recorded anonymously, with the doctor's consent in accordance with the conditions of the medical secrecy act. The questions asked are listed in Table 1. We collected the following data concerning the doctor: age and sex.
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The data from interviews and medical files were analysed with Excel and Statistica. The results are expressed as absolute values and as percentages, and comparisons were made using the chi-square test (P<0.05).
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Results |
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Thirty men and 16 women participated. Their mean age was 50.4 years (range: 3368 years). No significant difference was found in the responses given by doctors of different ages and sexes.
In response to question 1: Have you ever decided to withdraw or to withhold life-sustaining treatment from a child in paediatric nephrology? If yes, was this decision taken in the last 5 years?, 45 doctors responded yes and 31 stated that the decision concerned had been taken in the last 5 years. We analysed the criteria on which these decisions were based in a previous article [4]. Fourteen doctors had decided to withhold or to withdraw LST from a patient more than 5 years ago and one doctor had never taken such a decision.
Opinions of paediatricians concerning the withdrawal/withholding of LST
In response to question 2: In your opinion, do you think it is sometimes necessary to withdraw or to withhold LST?, 97.8% of the paediatricians (n = 45) answered yes. The reasons given were: to avoid a future poor quality of life, notably when diminished mental capacities are evident and when no improvement can be expected (n = 26), to avoid the artificial prolongation of life by medical means (n = 22), to limit suffering in children when there is no hope of improvement (n = 13) and to protect the family because the treatment is particularly burdensome and requires high level of participation on their behalf (n = 13).
One centre does not make decisions to withhold or to withdraw LST because the two senior doctors are opposed to such practices:
In response to question 4: Which non-scientific and scientific elements do you feel are important?, the following elements for the non-scientific elements were cited: acceptance of handicap by the doctor (n = 14), the parents attitude (n = 12), the doctor's ability to see the child as a relative (n = 11), the doctor's interpretation of the results (n = 7), the experience of similar cases (n = 7), the attachment of the doctor to the child and his or her family (n = 7) and the suffering of the child (n = 1). The following scientific elements were cited: hopes for future therapies based on current research (n = 20), a comparison with similar published cases to get an idea of the prognosis (n = 15), the doctor's experience of similar cases (n = 8), the results of biological and radiological investigations (n = 7) and the child's response to the treatments initiated (n = 2).
The answers to question 5: Does fear of medical and legal complications affect your decisions? showed that fear of such complications had little or no effect (n = 37, i.e. 82.2%), or a moderate or notable effect (n = 6 i.e. 13.3%). Two doctors did not reply.
Differences between withholding and withdrawing LST
In response to question 6: Do you deal with treatment withdrawal and treatment withholding in the same way?, only one doctor replied that the situations are identical. The 44 others answered that withdrawing LST is more difficult (n = 42) because of the responsibility in provoking or accelerating death. The doctor has to deal with psychological pain (n = 8) or feelings of guilt (n = 8). Withholding LST is less difficult to handle because we let nature take its course (n = 21) and because the family is informed whereas, in cases of withdrawal, the family is not systematically informed (n = 2). Withholding LST was considered more difficult by two doctors because the time between making the decision and the child's death is prolonged.
Ten doctors stated that they are opposed to withdrawal, thus had never practiced it.
Eighteen doctors highlighted a real problem: in cases of withdrawal of LST, the parents are unlikely to be informed or involved in the DMP.
Role of relatives in DMP
The answers to question 7: What type of information do you give to parents concerning the discussion about LST decisions? showed that the parents were given information about the prognosis and the future of their child (n = 36), informed that there was no possible treatment (n = 14) or told about their child's comfort and suffering (n = 12). In five cases, the doctors said that the information given differs according to the family.
The answers to this question uncovered three types of doctorparent relations: progressive persuasion of the parents by the doctor to convince them that his or her decision is correct (n = 27), informing the parents as objectively as possible and allowing them to make the choice (n = 10), assessing the parents opinion as best as possible and deciding in their favour (n = 8).
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Discussion |
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The doctors background
Our results highlight the ethical tension between professionalswho, in interviews, said that their decisions in such situations were taken on a case-by-case basis, according to their own moral conscienceand society, which is demanding greater transparency, as shown by the new laws [57].
Decisions are essentially based on the personal background of the doctors and on their professional experiencewhether they are used to evaluating prognosis and their ability to deal with the family [8]. For 60% of the paediatricians interviewed, decisions based on non-scientific arguments, mainly predicted quality of life. These arguments include acceptance of the degree of handicap within the family and within society, as highlighted by other studies [8,9].
In our previous article, we put forward negative and positive, medical and social criteria for decisions concerning LST, for discussion within teams [4]. This article takes up the current debate within the SFNP concerning the establishment of guidelines, and provides support for discussions concerning the place of the ethical convictions of healthcare professionals.
The debate among professionals should include the possibility of a conscience clause, making it possible to ignore these guidelines in certain conditions. Our work demonstrates the real complexity of establishing universal rules to be applied to individual cases, such that the doctor can respect his or her own moral conscience. This work is supported by guidelines produced by French [10] and European [11] scientific societies. The Spanish Paediatric Nephrology Society advises that for each decision, the emphasis should be on individual case assessment and consideration of the best interests of the patient [11]. The French Neonatology Society has specified that it is the responsibility of each team to decide whether or not to follow the recommendations on a case-by-case basis [10].
Doctorparent relationship
Our results show that the parents are not fully involved in the DMP. Most doctors (84.5%) do not wish to involve the parents in the decision. There are ethical and legal arguments in favour of greater parental involvement. The new law that came into force in April 2005 has made it obligatory to inform parents in cases of treatment limitation or withdrawal likely to put the life of the patient in danger and to record this decision in the patient's file [5].
At the ethical level, articles have been published analysing parents feelings about their child's death some years after a LST decision was made [12]. Meyer [12] found that 55% of parents felt that they had little control over the situation in the final days of their child's life, and a quarter said that if it had been possible they would have done things differently. The Léonetti report, on end-of-life care, gave a voice to the major ideological and political currents of thought in France. It highlighted the ethical tensions between the views of healthcare professionals and patients. Professionals feel that the final decision should lie with the doctor and should be taken with the family but never by the family, with the doctor involving the family with tact and humanity in their course of action. Patients are demanding the right to clear appropriate information and a larger call in decision-making (including the right to refuse treatment, even if essential to their survival, and through anticipated directives) [7].
Attitudes
One quarter of paediatric nephrologists declared that they were opposed to active attitude. They condemned voluntary intentions to accelerate death or to provoke death by the injection of a substance, as this is against the moral [13] and legal [14] codes. Passive attitude is more widely accepted because the death remains natural. Furthermore, as stated by all doctors, passive attitude is associated with fewer medical and legal consequences. Indeed, considering the issue of LST decisions, the position in France is to make a clear distinction between a situation involving an invasive medical act that directly leads to death (active attitude) and the other situations in which a LST treatment is stopped or a new treatment is withheld (passive attitude) [15]. The active attitude is currently forbidden in France and is a criminal offence recognised as homicide by the penal code [14]. In practice, the passive attitude is tolerated because it is similar to refusing futile care: the National Ethics Consultative Committee accepted the principle of exceptional euthanasia for such cases [15]. This position, as one saw previously, was reinforced by the law of 22 April 2005 [5].
Finally, given all these concerns, it appears that a major issue is to work on the way that families perceive the situation. Due to difficulties managing the parents and the doctors high levels of anguish, it seems that the parents are insufficiently consulted [16]. The high level of tension implies a need for a better training and for the inclusion of a neutral third party that could help in the DMP. The Léonetti report underlined the need for a training of the doctors which should be, at the same time, technical (handling of the antalgic drugs in particular) but especially ethical, concerning the clarification of the terms employed and the delivery of information to the families. In the United States, improvements in the training of doctors have been made by means of clinical case studies [17] and a third partyreligioushave been chosen [12]. In France, training sessions in the paediatric nephrology departments have been proposed: the third person could be the family general practioner [18], the treating paediatrician or a person designated by the family and known to be trustworthy [6]. The presence of a healthcare professional would have the advantage of not only assisting in the DMP but also helping the parents to deal with subsequent events.
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Conclusion |
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Our results also demonstrate the complex nature of the DMP, given the individual nature of each case, which, in the current debate about the need to and the legality of ending lives, should incite prudence. Indeed, any approach that is too dogmatic and any definition of criteria could be inappropriate if not developed in close collaboration with the healthcare professionals concerned.
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Acknowledgments |
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Conflict of interest statement. All authors declare that the answer to the questions on the competing interest form/cgi/content/full/317/7154/291/DC1 are all No and therefore have nothing to declare. The Details of contributors are given on the title page and the name of the guarantor is Pr Christian Hervé, Director of the Département dEthique Médicale et de Médecine Légale. No ethics approval was necessary for this manuscript, the work was performed under public fundings and we state for the independence of researchers.
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References |
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