Objective Routine prenatal screening for Down syndrome challenges professional non-directiveness and patient autonomy in daily clinical practices. This paper aims to describe how professionals negotiate their role when a pregnant woman asks them to become involved in the decision-making process implied by screening.
Methods Forty-one semi-structured interviews were conducted with gynaecologists–obstetricians (n=26) and midwives (n=15) in a large Swiss city.
Results Three professional profiles were constructed along a continuum that defines the relative distance or proximity towards patients’ demands for professional involvement in the decision-making process. The first profile insists on enforcing patient responsibility, wherein the healthcare provider avoids any form of professional participation. A second profile defends the idea of a shared decision making between patients and professionals. The third highlights the intervening factors that justify professionals’ involvement in decisions.
Conclusions These results illustrate various applications of the principle of autonomy and highlight the complexity of the doctor–patient relationship amidst medical decisions today.
- Genetic Counselling/Prenatal Diagnosis
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In Western countries, prenatal exams are widely used in pregnancy monitoring.1 Screening is offered to estimate the likelihood that the fetus is affected by Down syndrome. In case of an elevated risk, a diagnostic exam—an amniocentesis or chorionic villus sampling—is proposed to the pregnant woman. In that context, decision making is a complex process: on the one hand, the probabilistic non-invasive screening procedure does not exclude the possibility of giving birth to a child with Down syndrome; on the other hand, no technique is yet in use that would exclude the risk of miscarriage (in 0.5–1.0% of cases) related to diagnostic exams.
In accordance with the principle of autonomy, central in the contemporary bioethical context, the pregnant woman should determine her personal level of acceptable risk.2 To address the ethical dilemmas in prenatal screening and to protect practitioners in case of litigation, guidelines in gynaecology–obstetrics have proliferated.3 ,4 In Switzerland, the Law on Human Genetic Analysis, in force since 2007, requires that prenatal genetic testing can only be performed with prior written consent. Similar laws exist in other countries.
The principle of respect for autonomy is central in discussions on decision making developed in the genetic counselling literature, as well as more broadly in medical ethics. Many authors associate the concepts of respect for autonomy and non-directiveness. Consequently, respect for autonomy presupposes a fairly clear distinction of the roles in patient–doctor relationships. ‘Self-government’ and ‘self-rule’ are granted to patients,5 while non-directiveness is expected from professionals. This means ‘that the counsellor does not direct the decision-making process, but provides all the information needed for making an informed decision’.3 Respect for patient autonomy presupposes that adequate information on alternative options is provided and that there is no pressure.2
This vision of patient autonomy—situating non-directiveness at the centre of medical ethos6—accompanied the development of prenatal tests and of genetic counselling literature. The sensitive frontier between systematic screening and a drift towards eugenics has reinforced this approach:1 decision making in reproductive choices should be a personal matter.7
In recent years, however, the importance given to professional non-directiveness in decision making has been challenged,5 and how health professionals should act to respect patient autonomy remains controversial. Next to the perspective associating autonomy and non-directiveness, another approach emphasising shared decision making has emerged. It developed in response to the limits of the non-directiveness principle. In shared decision making, health professionals and patients are partners in making difficult choices.8 While some, like Schneider,9 argued for ‘mandatory autonomy,’ suggesting that respect for autonomy requires that the patient make the decision alone and unaided, others consider that ‘mandatory autonomy’ is a contradiction in terms. Respect for patient autonomy grants him/her the power to choose how to decide, including different degrees of physician involvement in the process.10 Being autonomous encompasses the freedom to delegate the decision to others, to look for help and even to be influenced by others. Quill and Brody,11 criticised the idea that respect for autonomy be synonymous with a mere disclosure of facts by the practitioner, excluding any further involvement. Earlier, Emanuel and Emanuel12 had discussed different models of doctor–patient relationships, including some describing medical involvement beyond the provision of information without being paternalistic. As shown by several recent studies, Down syndrome screening provides a good illustration of the evolution of the concept of respect for patient autonomy, from non-directiveness towards shared decision making.2 ,3 ,5 ,6 ,13
In that specific context, pregnant women often explicitly ask for the help of an expert regarding decisions about amniocentesis.14 Screening provides a probability that is expected to help decision making in that regard; however, a context of risk and uncertainty is likely to encourage demands for professional implication.
Prior studies have emphasised difficulties associated with decision making in prenatal screening. Patients usually do not question examinations perceived as routine;15 some are not aware of the dangers linked to prenatal exams16 and others accept amniocentesis in order to not ‘disappoint their physician’.17 The non-directive approach may seem confusing to patients who are accustomed to professionals giving their opinion.13 Furthermore, non-directiveness is rarely observed in daily clinical practices.2 Information provided by doctors is not necessarily optimal, and a significant proportion of them display an authoritarian attitude.18 Differences in the practices of gynaecologists–obstetricians and midwives have been observed. Midwives tend to provide more information to pregnant women,19 and these are more involved in the decision.20 Nevertheless, midwives can also exercise some control by selecting what information they provide.19
The prenatal screening context particularly exacerbates patients’ concern about making the ‘right’ decision. In their everyday work, health professionals regularly face patients who ask them, ‘What would you do in my position?’ These demands directly confront professionals with their own views regarding the application of autonomy. Do they interpret these demands as a sign of respect for autonomy or as its absence? Do they get involved in the decision-making process or do they enforce non-directiveness or ‘mandatory autonomy’9? In this paper, we aim to describe how practitioners experience the normative tensions that exist between abstract ethical principles (autonomy, non-directiveness and shared decision making) and the clinical reality that recurrently questions these principles. On the basis of an empirical study, we investigate the attitudes of the two groups of professionals who monitor pregnancies in Switzerland, that is, gynaecologists–obstetricians and midwives (the latter monitoring low-risk pregnancies only). Even though midwives and most gynaecologists–obstetricians refer their patients to specialised centres to undergo amniocentesis, all these professionals discuss with their patients the screening results and their ethical and decisional implications. Our goal is to investigate the ‘ethics in action’,21 that is, ethics as it is practiced in the face of patients who demand the professional's implication in the decision-making process. How do professionals define the ethically correct way to act in regard to these demands?
This study was conducted from March to September 2009 in a large Swiss city as part of a multidisciplinary project. The research was approved by the two local ethical bodies concerned (the ethics committee of the medical doctors association and the ethics committee of the hospital). Semistructured interviews were conducted with midwives and gynaecologists–obstetricians. Professionals working in the hospital were recruited with the help of the head doctor and the midwife in charge of care of the institution. Interviewees working in private practice were selected primarily on a random basis, although sometimes through personal contacts of the research team. Forty-one interviews were conducted, 26 with gynaecologists–obstetricians (14 women and 12 men) and 15 with midwives (all women). Eighteen gynaecologists–obstetricians worked in private practice and eight worked in the hospital. Eight midwives were working independently, and seven at the hospital. The participation of all professionals was voluntary, and anonymity was guaranteed (pseudonyms are used in the extracts provided in the results).
The interviews, conducted by three sociologists, covered three principal themes: developments the professional practice, strategies for providing information to patients and perception of the impact of legal rulings. Interviews lasted between 45 and 90 min. They were recorded and fully transcribed. We used the software Atlas.ti to code the data. Out of a total of 88 codes, the following codes were used in the present analysis: ‘amniocentesis and decision’, ‘assistance in the decision’, ‘consent/choice’, ‘disengagement’ and ‘women and decisions’.
From the accounts of professionals, we could identify different positions in regards to the application of autonomy in everyday practice. Three profiles were constructed along a continuum defining the relative distance or proximity towards the patients’ demands for professional involvement in the decision-making process. These profiles reflect distinct empirical positions regarding a legitimate degree of professional involvement in the decision-making process. They are described as ‘ideal-types’,22 accentuating contrasting characteristics across interviewees in order to describe at best the diversity of attitudes.
We first describe the profile including professionals who insist on non-directiveness in their personal application of autonomy in encounters with patients. In contrast to this first group, the other two emphasise the importance of shared decision making. However, as will be shown, they differ in their degree of investment in decision making. The first profile and the third profile, equally represented, were fairly rare, while the second group comprised three-quarters of the interviewees. Only small differences between gynaecologists–obstetricians and midwives were observed. Age and place of work did not affect the distribution among the three profiles.
These professionals stress the value of individual choice that belongs exclusively to the patient. They feel that they should stay out of the decision-making process as much as out of the decision itself. This approximates a consumerist relationship in which the doctor plays the role of a service provider:
It suits me when people are clear…at least one does not have to try to convince them…‘You would like that? Very good, these are the risks, be aware that…but if you would like it, then do it’ (Jérôme, private practice doctor).
These practitioners consider that they must withdraw from the process since patients could be excessively influenced by the importance they give to expert opinions:
I am sorry but I am not in your position, I will happily supervise you but I will not make the decision for you (Madeleine, private practice doctor).
I tell her, ‘No, no I am not thinking any further; it is now up to you to decide’ (Séverine, independent midwife).
These professionals believe that they must empower their patients, since decisions about the future of the child concern primarily the parents.
We say, ‘Now it is necessary that you decide. It is not our pregnancy. It is yours. It is your decision’ (Mathilde, hospital doctor).
In the end, these people are also adults; they are not children anymore…and soon they are going to be parents, so at some point they need to decide for themselves (Gabrielle, private practice doctor).
Decisions about prenatal screening involve intimate criteria (about abnormality and the acceptability of a handicap) and therefore should be made only by the pregnant woman. By enforcing responsibility, these professionals clearly delegate ethical questions to the patients.
Would you accept the loss of a non-Down syndrome baby in order to be certain of never having a Down syndrome child? That is very personal, you know. I have nothing to say on that because I have my own ideas about my own self, but I do not take it that they apply to my patients; they apply only to me (Madeleine, private practice doctor).
Screening provides a probability that the pregnant woman should interpret according to her own tolerance towards risk. The professionals rationalise their withdrawal by pointing out that acceptability of risk is personal.
The threshold of tolerance is not the same from one individual to another. There are those who find one in 10 000 to be enormous! And for others, even one in 300 is in the end very little… (Carine, private practice doctor).
Sharing the decision-making process
The majority of interviewees claimed to seek a balance between a non-directive attitude and involvement in the decision. To them, respect for autonomy is not limited to non-directiveness. Making the decision together with the patient allows a compromise between enforced autonomy and dependence upon medical authority. Humbert (hospital doctor) asserts the importance of “not attributing this kind of exaggerated responsibility to the patient”. He advocates instead “a shared responsibility”.
These practitioners consider that sharing their ideas or experiences might be helpful, and therefore, the boundary between the private and professional spheres is negotiable:
I have known her for fifteen years, I knew her as a kid, I delivered her first child….It's clear that I am part of her cocoon, of those who are close to her. It's difficult in these circumstances to remain behind the numbers (Annabelle, private practice doctor).
They consider that their role consists of assisting patients in the construction of their individual decisions and helping them find their own preferences.
(It is necessary) to provide as much information as possible, which will allow them to make a choice that is really theirs…that is to say that they have completely understood the situation, that they can make the decisions. Pregnancy is not something you simply endure; it is something through which you should be helped (Maude, independent midwife).
The subjectivity of the professional necessarily intervenes in the decision-making process. Some see it as an integral part of their work:
We have a role…of discussing, of being as open as possible in order to provide them the means to decide themselves, but then I think we shouldn't fool ourselves. When we have a discussion with someone, we can give an emphasis to certain information which pushes in the direction of a particular decision (Jean-Marc, hospital doctor).
Getting involved in the decision
In this third observed position, professionals consider it is legitimate to be involved in the decision-making process when patients request their opinion. This involvement can protect women from the guilt potentially associated with the ethical dilemma raised by screening. In contrast to the previous group, they overtly criticise ‘mandatory autonomy’.9 And they challenge excessive professional de-responsibilisation: being a good doctor involves not passing on the responsibility of the decision, even when difficult decisions that may have medicolegal implications are required:
Good medical practice is to explain reasonably the risks to people but not to leave them with the choice and the responsibility for this choice…It is necessary to keep oneself from the legalistic and American route which says: ‘Here is a page with a list of all the risks; sign there and then I can wash my hands of it. Hey, I have informed you and it's you who must decide’ (Humbert, hospital doctor).
These professionals criticise the increased regulation that has been transforming medical practice. To them, over-regulation creates an excessive distance in the doctor–patient relationship. This profile emphasises relational aspects. To get involved in the decision is part of a trustworthy relationship between patients and professionals.
If someone has developed a relationship with me as their doctor, ah, yes, I understand, they are going to ask me what I would do in that particular case and thus what I think in regards to their situation. Personally, I always give them my opinion (Nadine, private practice doctor).
Supporting the patient means personalising the decision making around probabilistic reasoning, something a layperson can find difficult:
They need to receive an opinion, something more personal….They understand the figures, but I don't know if they know what to do with them. Sometimes they find themselves at an impasse: this is dangerous, that is dangerous, what do I do?….I involve myself a bit: sometimes I think that the parents need someone to give them an opinion (Yvette, hospital midwife).
Getting involved in the decision reaffirms the professional obligation to avoid the transfer of risk management to pregnant women. Professional knowledge and experience constitute valuable resources that should help in the decision-making process:
Doctors no longer take up a position. That is to say, one is going to present the woman with a choice. And then one says to her, ‘There you go, you have this risk that this might happen if you do this, and if you do that you have that risk that that might happen. Now you must choose.’ It's terrible….When I started my training, we still worked with things that we believed in. It's a way to guide people; it's not a mistake. So…something like conviction still existed then (Zoé, independent midwife).
Discussion and conclusion
We described diverse professional interpretations as to what patient autonomy means in practice. These interpretations reflect the relative lack of consensus around this notion.5
Enforcing responsibility: professionals who withdraw
These professionals plead for withdrawing from the content of the decision as much as they plead for exemption from the process of decision making. For them, a ‘non-directive’ attitude implies not responding to the patient's request for involvement. Refusing to give one's opinion constitutes the sine qua non condition to respect autonomy. The professional role is restricted to that of a service provider. He/she delivers information as a presentation of choices to the patient, who is assumed to be able to decide between them. These professionals feel that the decision is foremost a personal one since a similar risk might be interpreted differently by patients. This framework, close to mandatory autonomy,9 rejects ‘any justificatory norm which is not entirely linked to the subjectivity of the patient… thus, the doctor provides the facts and the actions, the patient provides the values’.23 This injunction for responsibility also anticipates the patient's parental role: deciding to bring a child into the world is potentially anxiety generating, but in no case must the professional take up a position on the future of the child. Such involvement, described as ‘dirty work’,24 must be eliminated by taking up an emotional distance from the patient.25 Emotions, subjectivity or values are thus removed from the medical role.
These professionals adopt a restrictive definition of autonomy closely associated with non-directiveness as a ‘universal norm’.24 Their professional role must enforce non-directiveness through the self-imposed interdiction to express one's own opinion. This interpretation excludes directiveness as a ‘persuasive communication involving various combinations of deception, coercion and threat,’26 and ‘it is based on a narrow definition of autonomy whereby giving information and allowing clients to make their own decisions is sufficient’.5
Sharing the decision-making process: professionals who assist
These practitioners supporting ‘shared decision making’ are situated in an intermediate position, in-between distance and proximity. In their everyday practice, they experience a tension between the ethical obligation to respect the patient's autonomy and her need for support in the decision-making process. To them, these elements must be balanced according to the context. They acknowledge that non-directiveness is crucial, but they sometimes depart from this norm in order to match the patient's requests or to match the relationship built with her. They do not decide in the place of the woman; rather, they support her in the decision-making process, notably by reassuring her on her ability to make the best decision.27 Similar positions have been observed in other studies.28 ,29 Aware of the asymmetry of the communication process, especially regarding familiarity with risk,23 these practitioners adopt a pragmatic behaviour. Their active assistance means identifying their patients’ preferences among the various possibilities and accompanying them along the path that they choose for themselves. These professionals do not try to hide the impact of their ‘personal philosophy’ (Fernanda, private practice doctor) since they consider impossible to eliminate it from their discussion of risks. However, their reflexive stance and awareness of the influence of their subjectivity define an attitude that conforms to professional ethics.
This attitude emphasises the role of dialogue in the process of shared decision making,27 expected to improve patient satisfaction.5 Helping the patient to express her values and preferences can justify the imposition of such a dialogue by the professional when the former would prefer to simply delegate the decision. The autonomy principle entails patients’ rights not to know and to ask for assistance in decision making, including the delegation of decisions to others.10 Therefore, respecting patient autonomy also means inquiring about patients’ values and helping them to make their decisions accordingly.
Getting involved in the decision: professionals who get involved
These professionals are also supportive of ‘shared decision making’, but get more involved in the decision-making process than professionals from the previous group. Furthermore, they overtly criticise professionals who refuse to get involved to preserve non-directiveness. They provide various arguments to justify their presence in the decision-making process. They denounce the trend towards disengagement and decreased accountability towards patients while defining their own involvement as a sign of quality in the patient–professional relationship. They think that it is not up to the patient alone to judge how to manage risks. Their role consists of giving advice adapted to the patient's preferences, identified through a close relationship. Mutual trust is key and justifies the involvement of the professional in the decision. These professionals interpret involvement as a commitment to caring for the patient. They believe that every patient needs some support when faced with decisions that could potentially generate guilt and anxiety. They are critical of the excessive formalism related to medicolegal fears. This position supports studies suggesting that a close relationship developed with the patient is a stronger guarantee of medicolegal protection than a defensive attitude.30
In contrast with the first group, these professionals argue that autonomy is necessarily associated with relationships and values. Getting involved in the decision determines a proactive vision of autonomy that presumes openly that some forms of directiveness are legitimate and necessary.
Some limitations to our study must be noted. The research project was not directly focused on professionals’ definitions of autonomy. However, the interviews provided a wealth of information on the sensitive aspects of decision making, and we believed that this material offered relevant insights into ‘ethics in action’. We used the construct of a typology to describe the diversity of professional reality through accentuation of contrasting traits. Such an analysis implies that to some extent, we ignored potential ambivalence among individuals. For example, different statements from the same person could possibly be classified into two different profiles. Furthermore, we only know about professionals’ perceptions of their roles in the decision-making process but not whether their actual behaviour corresponds to their view about how they should act. Further ethnographic studies would help evaluate this aspect.
Conclusion: from non-directiveness to shared decision making
The results of our empirical study suggest that in everyday practice health professionals associate various meanings to the principle of autonomy. In clinical encounters, autonomy is interpreted as requiring professional withdrawal and also getting involved in order to respect patient wishes. For most of the interviewed professionals, achieving non-directiveness and a ‘wise decision’ should not preclude them from providing emotional support to their patients.29
Despite some contrasting tendencies, we noted that most of gynaecologists–obstetricians and midwives belonged to the position of professionals sharing decisions with their patients. Our findings suggest that shared decision making offers a model that fits better the ‘ethics in action’ than non-directiveness. Whereas midwives’ and doctors’ styles are usually considered irreconcilable, we observed that with regards to decision making around prenatal screening, their attitudes align with the traditional concept of assistance in midwifery: the pregnant woman is the main actor of her pregnancy and the professional is playing a supportive role.
These results can contribute to a broader reflection upon decisional ethics in medicine. Analysing the doctor–patient relationship around prenatal screening revealed how deeply the dilemmas associated with the management of risk and uncertainty are at the heart of contemporary clinical practices. Such situations concretely affect the application of the principle of patient autonomy.
Contributors SGH and SC were involved in the conception and drafting of the paper. CB-J and BSE performed revision of earlier drafts and coordination of research.
Funding The study was sponsored by the Swiss National Foundation for Research (grant number 100011-11828/1).
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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