Incompetence in practice in health care in the Netherlands: report of a study
M. C. I. H. Biesaart, Department of Health Law, University of Nijmegen, Nijmegen, the Netherlands. E-mail: firstname.lastname@example.org
Recent health legislation in the Netherlands makes specific provisions for patients who are not (fully) capable of acting reasonably in their own interests. If this legislation is actually to improve the legal position of incompetent people, it must be clear to whom these provisions apply. The description in modern legislation is that the person ‘is regarded as not being able to make a reasonable assessment of his interests in the issue in question’. The law does not provide criteria according to which competence can be assessed in practice. In the present study, data on the competence assessment of 133 clients were collected by means of a poll held among those people who decide on competence in practice and a total of 485 assessors were polled. Client files were also examined with the intention of gaining insight into the carers’ motivation to involve or exclude clients from the decision-making process. Finally, interviews were conducted with clients who have a mild or moderate intellectual disability. Large differences appeared to exist between the various assessors in the assessment of the general competence of clients. A general assessment of a client’s competence is not sufficient in daily practice; therefore, partial competence was also assessed. Opinions about the partial competence of clients varied considerably among assessors. A ranking was compiled of discriminating characteristics in the qualification of competence or incompetence.
Patient legislation in the Netherlands
Recent health legislation in the Netherlands makes specific provisions for patients who are not (fully) capable of acting reasonably in their own interests. For instance, the 1995 Wet op de geneeskundige behandelingsovereenkomst (Medical Treatment Agreement Act) contains provisions concerning the representation of patients who are (partially) incompetent as well as their resistance to treatment (Section 7 : 465, Dutch Civil Code, Subsections 3 and 6). In addition to similar provisions for the compulsory admission of patients, the 1994 Wet bijzondere opnemingen in psychiatrische ziekenhuizen [Psychiatric Hospitals (Compulsory Admission) Act] also contains provisions for determining a person’s competence. In 1995, a legal representative, in the form of a mentor, was introduced to act in the interests of patients who are (partially) incompetent in matters involving medicine and health care. Recent legislation does provide (partially) incompetent patients with additional protection when the interests of third parties are involved. Legislation in the Netherlands stipulates stringent conditions for organ donation by this category of donors (Organ Donation Act, Bulletin of Acts Orders & Decrees 1996, 370; this Act came into effect in phases in 1998); for example, the provisos that the organ involved must be a regenerative organ, that the recipient must meet certain conditions, and that the consent of both a representative and the court is required. Medical scientific research involving incompetent persons will only be permitted in a limited number of cases under specific conditions (Medical & Scientific Human Research Act, Second Chamber 1995–1996, 22 588, No. 9); for example, a more stringent consent procedure, and the requirement that the research will also benefit the patient and can only be performed with this category of patients.
Legal definition of incompetence
If this specific legislation is actually to improve the legal position of incompetent people, it must be clear to whom these provisions apply. The term wilsonbekwaam (incompetent), the key term in this context, does not occur as such in Dutch legislation. The description in modern legislation is that the person ‘is regarded as not being able to make a reasonable assessment of his interests in the issue in question’. The term ‘issue in question’ demonstrates that the legislation envisages a partial approach to incompetence. The law does not provide any further directions, not even specific criteria according to which competence can be assessed in practice ( Ministry of Justice et al. 1994 ) . Furthermore, the requirements are stringent: the legal regime apparently already goes into action as soon as the patient is unable to pass the reasonability test when assessing her/his own interests. Seen from the point of view of Dutch legislation, this is an understandable choice: the group requiring extra protection is broadly defined. It involves substantial decisions such as informed consent for medical treatment, organ donation or an experiment. This is in line with the conviction that the requirements made of competence must become more stringent as the consequences of the decision become more serious.
Incompetence and people with intellectual disability
However, in practice, it appears that decisions which concern more than the medical treatment alone are taken, particularly at those institutions where clients are admitted for long periods, such as institutions for the people with intellectual disability. Such decisions involve numerous issues such as the content of the care plan, nursing and guidance, other residents, internal transfers, work, daily occupation, food, clothing, room furnishings, holidays, pocket money, and external relationships. A more stringent concept of incompetence would be appropriate here. It is also in line with a time in which a growing number of clients are indicating that they wish to take their own decisions regarding daily matters, a time in which normalization and social integration are being pursued. Van Gennep (1997) recently stated that integration cannot be achieved by down-scaling facilities alone. True integration in new forms of accommodation can only be achieved by departing from the old institutional structure. This is still not the case everywhere. It is this culture which causes the development of competence to be neglected. In this approach, improved competence can only be achieved by an emancipationary approach to people with intellectual disability.
Assessment of competence in people with intellectual disability
In the present study, which was published as a book in the Netherlands ( Biesaart & Hubben 1997), the authors apply a broader concept of competence than the Dutch legislator. The emphasis is more on the process of decision-making than on the content of the decision. The way in which a decision is arrived at is the primary focal point. Whether or not this decision-making also leads to a reasonable result is of secondary importance (e.g. being able to understand the advantages of participating in discussions concerning a care plan, but deciding to go swimming instead). People who are considered to be competent sometimes also make unreasonable decisions. There is nothing with this situation if it happens wittingly. The content of the decision is not all-important, although an unreasonable decision that is also disadvantageous to the party involved can have the effect that the assessment of competence is subjected to closer scrutiny. The definition of competence used in the present study is that the client is able to take a decision concerning a certain subject based on sufficient relevant information – in line with his ability to understand – and that s/he is able to assess the nature and consequences of that decision. This also means that the client can be involved even when s/he is not fully, or not always able or less able to arrive at a reasonable assessment of his interests. In the Netherlands, clients are already being involved in partial and passive participation in their care plan discussions. It has been shown that the simple fact of the client’s presence leads to a more client-oriented discussion.
Purpose of the study
A low level of a client participation in discussions concerning a care agreement and plans had previously been noted within the Philadelphia Health Care Foundation or Stichting Philadelphia Zorg (SPZ), one of the largest organizations providing help to people with intellectual disability in the Netherlands. This is remarkable because the SPZ strives to approach its clients as ‘fellow citizens’, which implies that every attempt is made to involve the clients as much as possible in decisions concerning themselves. This gave rise to the study question of whether the disappointing participation can be related to the carers’ assessment of the clients’ competence. The study focused on the way in which this assessment came about and whether the assessors agreed with each other on the clients’ capacities. A number of important results are described below.
Data on the competence assessment of 133 clients were collected within the SPZ by means of a poll held among those people who decide on competence in practice. It appeared that four ‘assessors’ were involved for each client: three carers – the coach, senior carer and expert (psychologist or remedial educationalist), and a representative, usually a family member, sometimes in the position of curator. A total of 485 assessors were polled. Client files were also examined with the intention of gaining insight into the actual participation in the health care plan and the carers’ motivation to involve or exclude clients from the decision-making process. Finally, interviews were conducted with clients who had mild or moderate intellectual disability. Clients with severe intellectual disability were not interviewed because, in the opinion of the SPZ experts, this would be too demanding for this group or serve very little purpose. The terms follow DSM-IV terminology: (mild) IQ = 50/55–70; (moderate) IQ = 35/40–50/55; and (severe) IQ = 20/25–35/40.
The assessors were asked to give a general assessment of the clients’ competence. Out of the 454 assessors, 47% were of the opinion that the client was competent while 53% regarded the client as being incompetent (39 carers and/or representatives did not reply; see Table 3). Then it was determined whether the assessment of the same person varied, and if so, to what extent. Large differences appeared to exist between the various assessors, as shown in Tables 1 and 2. Four people who assessed the competence of 79 clients disagreed with each other in 66% of cases. In 47% of cases, the assessments of three people regarding 36 clients disagreed.
Assessment of general client competence with four assessors per client (n=79)
Assessment of general client competence with three assessors per client (n=36)
Table 3 shows that the assessor’s background plays a role: carers are more convinced of their clients’ competence than the representatives. An obvious reason for this is that the representatives, mainly parents, are more inclined to be protective to avoid as many risks as possible. However, both carers and representatives differ in the assessment of the same client’s competence (the deviating opinions of curators can be explained by the fact that, in general, they represent people with a more serious disability than other representatives).
Assessment of general client general competence by background of assessor (n= 454)
Besides general competence, the opinion of carers, representatives and clients concerning their client’s partial competence was also assessed. A number of aspects involving virtually all daily decisions were formulated on the basis of a previously conducted pilot study. Table 4 shows that the opinions of the clients and assessors varied considerably.
Percentage assessment of partial competence by clients and assessors (clients, n
= 95; assessors, n
It should be kept in mind that the answers are partly related to the opportunities offered to the clients. If assistance is offered early on, a person intellectual disability will not rely on her/his own abilities and be more inclined to assume a helpless attitude. This is described in the literature as the concept of ‘acquired helplessness’ ( Van Gemert & Oostra 1997). Nearly all clients were considered capable of making choices regarding eating, drinking and clothing. This situation changes when it comes to decisions which require long-term insight. The clients regard themselves as being less capable of making such decisions, as do the assessors.
Table 4 confirms that a general assessment of a client’s competence is not sufficient in daily practice. The extent to which a client and colleagues regards the client as being able to form and express an opinion appears to be highly dependent on the issue involved and is highly context dependent.
Characteristics of a client and incompetence
The extent to which an assessment is determined by the client’s personal characteristics was also examined: Does the assessor take certain characteristics into consideration in assessing the client’s competence? A series of recurring characteristics was compiled on the basis of the pilot study results. The assessors were asked to name those characteristics which applied to their client. By combining these statements with the initial assessment of the client’s competence in a contingency table, a ranking could be compiled of discriminating characteristics in the qualification of competence or incompetence (see Table 5).
Assessment of client characteristics as compared to the assessment of total competence (all assessors, n
Provision of care in practice
In 120 dossiers, 111 care plans were found. It appeared that only 14 clients had participated in drawing up the care plan, despite the fact that – as shown above – 47% of the assessors regarded the client to be competent. In 120 examined dossiers, 98 care agreements were found. Although the assessors regarded more than 40% of the clients as being capable of signing a care agreement, only 18% actually did so. During the interviews, it appeared that 94% of the clients had forgotten the existence of such an agreement. Obviously, formal participation does not by any means always lead to actual involvement.
The results of the present study with regard to participation in the care plan and care agreement, as well as decisions concerning the client’s daily life, demonstrate that, in theory, the carers support the concept of the autonomous, competent client, but apparently have difficulty in applying this concept in daily practice.
The most significant conclusion is that the competence of a significant number of clients is assessed very differently, also among carers mutually. Some may find a client competent while others find the same client incompetent.
There is no reason to assume that this will be any different in other institutions or sectors of residential care. The disadvantages of such subjectivity in assessments will naturally have an even greater impact if only one carer assesses a client’s competence. The fact that three carers are involved in the care of one patient in the institutions examined by the present authors neutralizes the effects of the subjective assessment to a certain extent. However, neutralization does not always occur in daily practice. The present study included an examination of the relationship between the carer’s assessment and the way in which the client is treated. In other words, does the carer also act accordingly in practice? The present study showed that clients are involved much less in decision-making (e.g. in compiling her/his care plan) than one would expect in terms of the assessment.
The significance of this for the client is self-evident: her/his autonomy depends on it. The carers’ assessment should be a true reflection of the client’s capacities and the carers should act accordingly. The present authors made a number of recommendations in their study to improve the meticulousness with which an assessment is carried out. These will assist the institution in promoting a more emancipatory approach to clients by their carers.
Prerequisites for a procedure to assess competence
In our opinion, it is hardly possible or desirable to include a number of objective standards in a protocol in order to ‘score’ someone’s competence. However, it is essential that a meticulous procedure for assessing incompetence is included in a guideline or protocol. This procedure should at least take account of the fact that competence can be partial, context dependent and fluctuating.
The present study also showed the importance of making an assessment in an environment in which the client feels comfortable. The assessors must have the client’s confidence. They must consult the care team, the home front and other persons in the client’s confidence, while a psychologist or remedial educationalist should give a second opinion after seeing the client. The concretely formulated questionnaire is discussed with the client. The categories listed in Table 4 can be used here and the choice of a representative can be added to these. The client expresses an opinion of her/his own competence with regard to the various decision as much as possible. The various assessors try to reach consensus on the client’s competence. They either do this in advance with a range of potential decisions which the client might reach or immediately before the decision in question is made. Assessment must be cyclic unless irreversible complete incompetence is involved. People suffering from intellectual disability often have speech or hearing disabilities as well, and therefore, all possible aids must be employed to diminish or relieve these limitations. In any case, such disabilities should never be confused with incompetence or reduced competence.
A great deal can be gained by a meticulous procedure: structured consultation will lead to less diverse assessments; estimating competence per decision does justice to partial competence; and regular assessment does justice to fluctuating competence. If rules for decision-making are laid down, individual and intuitive assessments can also play a role. Knowledge acquired in this fashion must not be underestimated, certainly not when it concerns people and the subtleties in their contact with others. A client’s temperature can be expressed in figures, but her/his competence cannot.
Received 2 November 1998;revised 21 June 1999