Elsevier

Health Policy

Volume 70, Issue 3, December 2004, Pages 291-301
Health Policy

Ulysses directives in The Netherlands: opinions of psychiatrists and clients

https://doi.org/10.1016/j.healthpol.2004.03.003Get rights and content

Abstract

In this article we present a study on the opinions of Dutch psychiatrists and clients on Ulysses directives. In-depth interviews were conducted with 18 clients and 17 psychiatrists. Most respondents were proponents of Ulysses directives. The most frequently mentioned objective of these directives was to secure timely admission to hospital, although a large minority was mainly interested in giving patients influence on treatment decisions. Psychiatrists differed on how much autonomy they preferred with regard to decisions about the moment of admission and kind of treatment. Clients also differed in this respect. Pressure from others to execute a Ulysses directive, and premature admission to the hospital were mentioned as risks of Ulysses directives. Crisis cards were seen as an alternative by many psychiatrists and some clients. Recommendations are made for a good functioning of Ulysses directives, and the appropriateness of crisis cards as an alternative for a number of patients is discussed.

Introduction

In 1982 Thomas Szasz presented a proposal for a psychiatric will. With this proposal he tried to reconcile opponents and proponents of compulsory admission and treatment by offering clients the opportunity to give instructions to mental health professionals on how to handle future psychotic or manic episodes. Clients could ask to be spared commitment and treatment, or explicitly request them. A ‘negative’ or prohibitive advance directive was intended to protect them against the power of psychiatry, a ‘positive’ or prescribing advance directive against the power of psychosis [1].

Others further developed the ideas on ‘positive’ directives [2], [3], [4]. These directives were named self-binding or Ulysses contracts, after Ulysses, who had himself bound to the ship’s mast. That way he could enjoy the singing of the Sirens without the risk of being seduced into changing course and crashing onto the rocks. The essence of these Ulysses directives for mental health care is that a client with recurrent psychiatric episodes which are not (yet) deemed dangerous gives permission in advance for admission and treatment, thereby forfeiting the right to refuse them. The ensuing characteristic of irrevocability when the patient is in psychiatric crisis makes Ulysses directives a special subset of the broader category of psychiatric advance directives (PADs). The irrevocability of a legally based Ulysses directive actually expands the possibility of compulsory commitment or treatment.

The idea of Ulysses directives has an ethical foundation in the principle of respect for autonomy: the ‘impaired’ autonomy of the psychotic patient is replaced by the ‘true autonomy’ of the earlier healthy person [5]. Notwithstanding this objective of enhancing patient autonomy, the idea is not favoured by everybody. Mental health consumers have argued that unless advance directives provide for both the acceptance and rejection of particular forms of treatment, the very rights patients have worked so long for are surrendered [6]. Others have mentioned the risk that patients are pressured by relatives, partners or professionals to sign a Ulysses directive [2], [4], [7]. This would mean that the instrument designed to enlarge true autonomy is turned into an instrument of paternalism. Furthermore, several practice issues are mentioned which may hamper the beneficial effects of Ulysses directives or PADs in general. These are, among other things, lack of information and competence of clients to execute a PAD, lack of resources which make it impossible to honour hospital preferences, and mediocre relations between clients and professionals [8], [9], [10].

In nearly all states of the USA it is possible to make arrangements for psychiatric advance directives (PADs) within the framework of the Patient Self Determination Act (PDSA) of 1991 [11], [12]. Seventeen states have laws that specify legal psychiatric advance directives [10]. Directives may be instruction devices or directives based on proxy or surrogate decision making, or a combination of both. Clients may consent to and refuse treatment. However, it is still uncertain whether these directives have sufficient legal basis to allow forced treatment of an incompetent, refusing patient who has formulated a Ulysses directive [13]. Outside the USA, for instance, in Austria and in Ontario (Canada), the law also allows for PADs [14], [15].

In The Netherlands the first proposal for Ulysses directives was formulated by Berghmans [16], with the introduction of the Civil Compulsory Admission Act (1994) in view. This law eventually replaced the Lunacy Act of 1884, after more than 20 years of political debates and years later than comparable amendments of psychiatric compulsory admission elsewhere. With this law, criteria for involuntary commitment became more stringent: danger for the patient or others instead of the need for psychiatric treatment. Criteria for compulsory treatment became even more stringent: serious danger. The Civil Compulsory Admission Act made the advantages of a Ulysses directive clear: people who in a manic or psychotic episode may cause harm to their social network, marriage, financial situation or household do not always meet the new stringent criteria for compulsory admission, even though experience shows that they regret their actions afterwards; in these cases a Ulysses directive provides for timely admission and treatment. For that reason some of the Dutch patients or relatives’ organisations support these directives. One of these organizations developed a proposal for Ulysses directives. This patient organisation emphasised that apart from preventing severe escalation, the aim was to give patients more influence on treatment decisions [17]. In 2002 a bill on Ulysses directives was submitted to the Dutch Parliament.

Most of the participants in debates about the desirability of legislation on Ulysses directives are ethicists. A recent development in the field of medical ethics is the combination of empirical research and medico-ethical and legal analysis. The aim of ‘empirical ethics’ is to add knowledge of daily medical practice to ‘armchair theorising’ [18], [19]. In these studies opinions of persons who are themselves involved in psychiatric practice are investigated. These people, be they medical professionals or clients, are able to give information about policy issues at hand: how are problems and potential solutions understood and interpreted. This might compensate to some extent for the shortcomings of theoretical ethics, i.e. that ethicists’ propositions are sometimes based on empirical claims which are not supported by evidence [20], [21]. Furthermore, medical professionals and clients probably have a better idea of what is required for a successful functioning of health care laws, unexpected side-effects, and alternatives [22]. They are more aware of the fact that there may be ‘good sociological reasons’ why ethically inspired health care law leads to ‘bad bioethical outcomes’ [23]. Finally, clients can offer their individual and subjective evaluations of advantages and disadvantages, which are necessary to balance pros and cons.

The purpose of this study is to investigate opinions of psychiatrists and clients on Ulysses directives in order to contribute to the up till now largely theoretical debate about Ulysses directives in general and their precise contents. In addition to opinions on Ulysses directives, experiences with them were also investigated. Strictly speaking, this is not possible since Ulysses directives have no legal basis as yet in The Netherlands. Nevertheless, some clients do have written statements, named crisis cards or emergency plans, that specify what action they want in case of crisis. If these include an agreement with regard to admission and treatment, we call them Ulysses directives. Relatives and friends of clients were also investigated, since they are often affected by psychiatric crisis and act as proxies. These results are discussed elsewhere, as were the opinions of the respondents about procedural matters [24]. The research was part of a threefold study: Philosophical-anthropological aspects were studied by Van Willigenburg [25]. Gevers has discussed legal aspects of the pending Dutch law on self-binding [26] and statutory regulations elsewhere [13].

Section snippets

Methods

As we were interested in opinions, considerations and experiences and wanted people to express these in their own words, with the possibility to present new or unexpected viewpoints, a qualitative research method of semi-structured interviews was the most appropriate research method [27]. In qualitative research data analysis alternates with data collection, which offers the possibility to adapt the research questions or the sampling strategy [28]. Our intention was not a representative study

Results

The opinions of 18 clients and 17 psychiatrists on Ulysses directives are presented with specific attention for the variety in opinions. Quotations will illustrate abstract statements.

Discussion and conclusions

Our study on opinions and experiences of psychiatrists and clients means an important contribution to the largely theoretical medico-ethical and legal debate about Ulysses directives. For instance, our respondents mentioned several practical requirements for a good functioning of Ulysses directives. We found that many clients favour Ulysses directives not only to guarantee timely admission into hospital but also in order to influence treatment decisions. Furthermore, many psychiatrists pointed

Acknowledgements

The research was funded by the Ethics and Policy program of the Dutch organisation of Scientific Research (NWO no. 210-10-274).

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