Transcending Responsibility. Empirical and theoretical perspectives on involuntary admission of patients suffering from Korsakoff's syndrome.

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(1)Transcending Responsibility Empirical and theoretical perspectives on involuntary admission of patients suffering from Korsakoff’s syndrome.. Susanne van den Hooff.

(2) Photo at cover: © Susanne van den Hooff, Vallendar, 2015 Cover design: Proefschriftmaken.nl || Uitgeverij BOXPress Printed & Lay Out by: Proefschriftmaken.nl || Uitgeverij BOXPress Published by: Uitgeverij BOXPress, ‘s-Hertogenbosch © Susanne van den Hooff, Utrecht, The Netherlands. The printing of this thesis was financially supported by the Korsakoff Knowledge Center, Rotterdam and Hogeschool Inholland, Alkmaar.. All rights reserved. No parts of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior written consent of the author..

(3) ‘Faith is taking the first step even when you don’t see the whole stairway’. Martin Luther King (1929-1968).

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(5) Transcending Responsibility Empirical and theoretical perspectives on involuntary admission of patients suffering from Korsakoff’s syndrome. Overstijgende verantwoordelijkheid Empirische en theoretische perspectieven op onvrijwillige opname van patiënten met het syndroom van Korsakov (met een samenvatting in het Nederlands). Proefschrift ter verkrijging van de graad van doctor aan de Universiteit voor Humanistiek te Utrecht op gezag van de Rector Magnificus, prof. dr. Gerty Lensvelt-Mulders ingevolge het besluit van het College voor Promoties in het openbaar te verdedigen op 1 december 2015 ’s middags om 12.30 uur. door Susanne Lucienne van den Hooff geboren 27 augustus 1965 te Roden.

(6) Promotores: Prof. dr. Anne Goossensen, Universiteit voor Humanistiek Prof. mr. dr. Martin Buijsen, Erasmus Universiteit. Beoordelingscommissie: Prof. dr. Arjan Braam, Universiteit voor Humanistiek Prof. dr. Evert van Leeuwen, Radboud Universiteit Prof. dr. Katrien Luijkx, Tilburg University Prof. dr. Hendrik Roozen, Tilburg University Dr. Dorothea Touwen, Universiteit Leiden.

(7) Contents Chapter 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 General Introduction Chapter 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Healthcare professionals’ difficult balancing act in admission of patients suffering from Korsakoff’s syndrome into long-term care Chapter 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 How to increase quality of care during coercive admission? A review of literature. Chapter 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Conflicting conceptions of autonomy. Experiences of family carers with involuntary admissions of their relatives Chapter 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Ethical considerations of the value of patient knowledge in long-term care. A qualitative study of patients suffering from Korsakoff’s syndrome Chapter 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91 Healthcare professionals’ dilemmas: judging patient’s decision making competence in day-to-day care of patients suffering from Korsakoff’s syndrome. Chapter 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107 Healthcare professionals under pressure in involuntary admission processes Chapter 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123 Findings and General Discussion Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Samenvatting (Dutch) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dankwoord (Dutch) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Curriculum Vitae . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . List of publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 139 145 149 151 153. 7.

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(9) Chapter 1 General Introduction. 9.

(10) General Introduction. Problem statement This thesis focuses on involuntary admission processes into long-term care of patients suffering from Korsakoff’s syndrome. In general, the number of involuntary admissions in the Netherlands is still rising (Post van der et al. 2009; Van de Wetering 2008). It is a procedure that is widely discussed from ethical point of view, notably with respect to emerging tensions between individual freedom, the need to protect patients, and paternalistic interferences. Within the healthcare sector in western societies, values such as independence of others’ help, self-dependence and self-determination, and the opportunity to choose and take responsibility for one’s one life are dominant values collectively referred to as autonomy or self-management (Delmar 2013, 975). Patients’ autonomy seems to be a key principle in the consideration of an involuntary admission. However, the principle of autonomy has many facets, which are difficult to catch in a single definition without losing some of its meaning. As Schermer (2001) noted: ‘It is best understood as an umbrella notion that can cover different aspects and can be understood from different perspectives’. This notion permeates the work in this thesis. In standard works and textbooks on medical ethics, patients’ autonomy in the context of medical and research practices is generally understood as the right to self-determination, that is the right to make one’s own choices and the obligation of others to let one do so. Patients are, in general, seen as free, self-governing agents who carry final responsibility for their own health and are entitled to choose for themselves what norms and values they want to pursue. They are free to make autonomous decisions – decisions that are un-coerced and best express the outcomes of their own deliberative process (Christman 2004). Other persons have to defer to these choices, even when they diverge from the norms and values that prevail in society (Welie 2008, 13). However, the right to autonomy1 is not just about refusing treatment or admission, often called the negative right derived from the principle of autonomy; it is also about being involved in the decisions about treatment or admission, which can be seen as a positive right. Without adequate information a patient cannot attain autonomous decisions. Thus, protection of patient autonomy also imposes a positive duty to provide satisfactory information to ensure that patients are free to make their own decisions. This thesis narrows the focus on the interpretation and the role of the principle of autonomy during the procedure of involuntary admission of patients suffering from Korsakoff’s syndrome in the Netherlands. In the Netherlands, involuntary admission is permitted only when patients meet three criteria stated in the Dutch Compulsory Admission Act (BOPZ). Firstly, the patient does not agree with admission. Secondly, he presents a danger to himself or others as a consequence of his mental condition. Thirdly, there is no reasonable alternative 1. 10. It should be noted here that autonomy is not a legal rights described in for instance international legislation. It is however recognized as a right by the European Court of Human Rights (EHRM 29 april 2002, Pretty/UK. Autonomy in the sense of the right to self-determination often is understood as the right to be left alone, but also refers to the freedom to make own choices and being entitled to self-development (Hendriks 2014)..

(11) for the involuntary admission. A comprehensive description of the admission possibilities is given in chapter 2 of this thesis. The law is clear: it is unlawful to impose a medical treatment on competent persons without their consent. In the Netherlands a Court of law decides the permissibility of involuntary admission. When a judge has decided that a legal mandate is required, there is no appeal possible against this decision. The first time a legal mandate is assigned, it is valid for a period of six months. However, the Court is empowered to decide for a shorter period. After these six months, medical experts can apply for an extension of the legal mandate for up to one year, after which a new one-year extension can be applied for. After a patient has been involuntary admitted for five consecutive years, the Court may decide to prolong the mandate for two years. The process of requesting a legal mandate at Court seems problematic when Korsakoff’s syndrome has not yet been formally diagnosed. The fact is that most patients appear quite normal, often have normal IQs, and can be alert, intelligent and attentive. Nevertheless, Korsakoff’s syndrome is a chronic neuropsychiatric condition, characterized by impairments of memory and executive functions, among other things. It often results from acute Wernicke’s encephalopathy, which is a medical emergency mostly secondary to chronic alcohol abuse and concomitant thiamine deficiency. Untreated, Wernicke’s encephalopathy will lead to death in up to 20% of cases (Harper et al. 1986) and in 85% of the other cases will result in Korsakoff’s syndrome (Day et al. 2013). The Diagnostic and Statistical Manual of Mental Disorders (DSMIV-TR) refers to Korsakoff’s syndrome as alcohol-induced persisting amnestic disorder and includes it under the category of substance-induced persisting amnestic disorders (American Psychiatric Association 2000). Prevalence studies are out of date or lacking (Wijnia et al. 2012; Draper et al. 2011). The care needs of patients are often not recognized adequately (Schepers et al. 2000) and often clear diagnostic criteria for Korsakoff’s syndrome are missing (Oslin et al. 1998; Galvin et al. 2010). In the Netherlands, the number of people suffering from Korsakoff’s syndrome is estimated at 8,000 to 10,000. This estimated number seems fairly stable2. The syndrome, which is usually progressive, can be arrested by massive doses of vitamin B1, but cannot be reversed (Kolb & Whishaw 1985; Arts 2004; Kopelman et al. 2009). Up to 25% of patients require long-term institutionalization, because they are no longer able to live an independent life and permanent care remains necessary (Victor et al. 1989; Kopelman et al. 2009, 148). These patients can be admitted to nursing homes at a relatively young age and the number of these young patients is growing3. In literature, little systematic information about the lives of patients suffering from Korsakoff’s syndrome can be found. Also, hardly any information is available about the consequences of legal interventions and actual proceedings in care practices for these patients. Due to their reduced awareness of illness they perceive no problems (Wijnia et 2 3. http://www.korsakovkenniscentrum.nl, visited on January 20th 2015. http://www.korsakovkenniscentrum.nl, visited on February 17th 2015.. 11. Chapter 1. General Introduction.

(12) General Introduction. al. 2012, 104) and consequently will not ask for and even reject offered care. A newspaper article4 illustrated this problem. Textbox 1. Newspaper article: ‘A Hague physician (52) was removed from his profession. The Haque – Yesterday, the College of Medical Supervision (College van Medisch Toezicht) removed a 52-year-old physician from his profession. The physician has a drinking problem. For many years he has been suffering from Korsakoff’s syndrome, a disease which is the result of years of alcohol abuse. He still thinks that he is able to practice his profession despite his drinking problem. According to himself, his patients have never been in danger. Nevertheless, he was voluntarily admitted into an institution in 2005, because he felt that his drinking became a serious problem and should be ended. During this admission Korsakoff’s syndrome was diagnosed. In 2008, this was reason for the Health Care Inspectorate (IGZ) to file a complaint against him. The man, who worked as a physician in a nursing home and as a medical insurance doctor, denies that he suffers from a serious illness. (...) Moreover, he cannot remember much and has problems to concentrate. “This makes him incapable of practicing his profession”, argued the College.’. Not surprisingly, moral questions surrounding involuntary or coerced admissions of these patients play an important role. Especially, the role of coercion in this specific admission process seems important, because it is not always possible to arrange a formal legal mandate for an official involuntary admission. The criteria laid down in the Dutch Compulsory Admission Act cannot always be met or even create confusion. Often, the use of some kind of coercion seems the only option to provide care to these patients. Coercion in this sense can be defined as: “The intentional overriding of one person’s preferences or actions by another person, where the person who overrides justifies the action by the goal of benefiting or avoiding harm to the person whose preferences or actions are overridden” (Beauchamp & Childress 2013, 215). It is not unthinkable that without coercion patients suffering from Korsakoff’s syndrome literally will drink themselves to death. In a scientific context, especially within the framework of law, ethics and healthcare, questions can be formulated on legal interventions, coercion and incompetence of patients suffering from Korsakoff’s syndrome (Goossensen et al. 2007). In practice, admission can lead to complex situations and questions. As mentioned above, most patients suffering from Korsakoff’s syndrome lack insight into their illness and reject care. They have not committed any offence, apart from being repeatedly intoxicated in public perhaps, but still are compelled to enter an institution for their own good (Hall et al. 2014). Can they be seen as free, selfgoverning agents who carry final responsibility for their own healthcare? Are they entitled to choose for themselves what norms and values they want to pursue? What is society’s role with respect to these patients? Do we have to interfere in these patients lives or should they be left on their own? How can we judge this? What can be understood as good care during involuntary admission processes? 4. 12. Noord Hollands Dagblad, 13th January 2010..

(13) Little is known about the what and how of involuntary admission of a patient suffering from Korsakoff’ syndrome – and the impact this has on persons involved. The goal of this study was to enlighten this process in a way that is relevant to scientific theory and practice, that is by investigating the experiences of the actors in this process. Before describing the aim and methodology of this research, it may be worthwhile to introduce the theoretical entrances for good care during involuntary admission used in this thesis.. Theoretical entrances Involuntary admission processes are multi-disciplinary processes in which healthcare professionals, legal professionals, family carers, and patients all come together. Their knowledge and perspectives are at the very core of the subject matter of this thesis. Starting point for this study are the theoretical entrances for formulations of good care found in the legal, medical and ethical discourses. First of all, Dutch involuntary admission law provides a rationale for the concept of involuntary admission and it gives procedural context to the focus of this study: the criteria applicable to involuntarily admit patients suffering from Korsakoff’s syndrome. A description of Dutch healthcare law in force at the time of this study can be found in the sub-studies reported in Chapters 2 and 4. By its nature, legislation is not able to give answers to complex moral dilemmas; it only delineates the boundaries of the area in which ethical considerations should be made (Touwen 2008, 247). Secondly, most literature in the medical discourse describes good care within treatment situations such as care during interventions or diagnostic processes, instead of the admission situation. However, in both situations healthcare professionals are recognized as having high medical responsibility and morality; each medical decision must be balanced between their science-based medical knowledge and the unique situation of the patient (Touwen 2008, 252). This professional morality specifies general moral norms for the institutions and practices of medicine. In recent years, codes of medical and nursing ethics have provided more formal. Textbox 2. Some parts of the Code of Conduct for Physicians. “I.1 The physician is guided in his professional practice by the promotion of health and wellbeing in humans; the quality of care; respect for the patient’s right of self-determination and the interests of public health. I.5 The physician observes the limits of his professional practice. He refrains from actions and statements that exceed the scope of his own knowledge and abilities. II.2 The physician will treat patients equally in similar situations. II.3 The physician tailors the care to the patient’s actual individual needs. II.7 The physician has a duty to respect the patient’s rights according to the law, case law and the guidelines of the professional association. II.9 The physician actively involves the patient in the decision-making process. He does not take any action until the patient or his or her representative, after receiving sufficient information, has granted specific consent.”. 13. Chapter 1. General Introduction.

(14) General Introduction. codifications of, and instructions in, professional morality (Beauchamp & Childress 2013, 7). In the Netherlands, for instance, the responsibilities of physicians are described in the Code of Conduct for Physicians (Royal Dutch Medical Association [KNMG], 2002). Some of these responsibilities are given in textbox 2. According to the most dominant view in bio-medical ethics, good care is grounded on four moral principles: respect for autonomy (a norm of respecting and supporting autonomous decisions), non-maleficence (a norm of avoiding the causation of harm), beneficence (a group of norms pertaining to relieving, lessening or preventing harm and providing benefits and balancing against risks and costs), and justice (a group of norms for fairly distributing benefits, risks and costs (Beauchamp & Childress 2014, 13). These principles are not rigid or absolute, instead they must be accurately balanced and specified so they can function in particular circumstances (ibid, 15). When problems of choice emerge, methodically thinking through the alternatives may be necessary, as is deliberation, till in the end a conclusion can be reached. Another theoretical entrance for the formulation of good care can be found in care ethical approaches, which focus on the vulnerability of humans. The central concepts in these approaches are the specificity of situation and context, attention to the manner in which people interact, and sensitivity to the feelings that emerge during this interaction (van Heijst 2011, 18). These underline the interdependency of patients. Care is a fundamental aspect of human life and this has profound implications. A care ethical view is more concerned with the danger for abandonment than the danger of interference. It sees moral questions in terms of responsibilities rather than in terms of rights (Verkerk 2001). Care ethical theory encourages us to think about how we structure social practices and institutions to provide adequate care for the most vulnerable members of society and their carers (Groenhout 2004, 161). People suffering from Korsakoff’s syndrome are vulnerable, they cannot be cured and many of them cannot live on their own because they lack the ability to care for themselves. They are dependent on important others around them to support and provide for them. These others may take healthcare related decisions while patients themselves do not realize that this is necessary. However, when no support is offered the danger of abandonment is real. In this thesis the influences of the above-mentioned complexity, the different conceptualizations of concepts and the challenges this brings along, will be explored and discussed.. Aim and research questions The primary aim of this thesis is to contribute to scientific knowledge about good care during involuntary admission processes of patients suffering from Korsakoff’s syndrome by means of exploring, describing and taking into considerations moral and legal issues relevant to this practice. To this aim, the scientific literature was searched, and professionals, family carers and patients themselves were interviewed to gain insight into their views on this specific. 14.

(15) involuntary admission process. The main question guiding the research for this dissertation reads as follows: What tensions, concepts and challenges play a major role in the formulation of good care in involuntary admission processes for patients suffering from Korsakoff’s syndrome? In order to answer this main question, four sub-questions were formulated: 1. What are the themes reported in scientific literature with respect to good care during involuntary admission processes from the perspectives of healthcare professionals and patients? 2. What tensions and challenges can be deduced from family carers’, patients’ and healthcare professionals’ narratives on good care during involuntary admission? 3. What significant theoretical or conceptual reflections can be made related to the quality of care during involuntary admission processes? 4. What clues or entrances can be formulated with respect to improvement of care in involuntary admission processes for patients suffering from Korsakoff’s syndrome?. Research approach and methodology The study as a whole is of a qualitative nature. This research approach was chosen as this permits obtaining a deeper understanding of the processes under investigation. It provides insight into how our respondents think, feel and reflect about involuntary admission processes. In general, qualitative research implies searching for ideas, backgrounds, motives and resistors in the language of target groups. Details of the specific methodologies and procedures used for each sub-study are described in the relevant chapters 3 through 7. A grounded theory influenced approach was chosen as the theoretical basis for this study, built on the grounded theory approach, which offers a sensitive and rigorous method for investigation. The major reason to opt for this approach was that it enables an understanding of an area which requires no preformed concepts of knowledge or reality (Jones & Alony 2011). After all, before this thesis project I was totally unfamiliar with the healthcare environment of patients suffering from Korsakoff’s syndrome. This meant that I could start with an open mind and a good amount of curiosity. Glaser and Strauss (1967) recommend researchers to enter the field without preconceived or a priori ideas of the subject area. To gain some basic knowledge, I planned a serious preparatory phase from September 2010 till May 2011. As Glaser5 said, “The initial literature is so irrelevant” and “Go out and see what they are doing”. So I went out into the field of Korsakoff’s healthcare and talked with healthcare professionals and relevant experts to gain insight into the problems they experience. To illustrate what I learned, I cite some quotes: 5. Glaser at a seminar on grounded theory influenced approach dated June 2010. Available at: http://www. youtube.com/watch?v=7S1kJ0k3yHk. 15. Chapter 1. General Introduction.

(16) General Introduction. A family carer told: “The family does not have the power to change the situation; you simply do not know where to go to. You cannot reach healthcare. You do not know how. If a person suffering from Korsakoff’s syndrome is not yet recognized as such, what should you do?” (interview January 21th, 2011). A patient said: “I have been admitted with a legal mandate, I am suffering from Korsakoff’s syndrome. I have lost my house and my self-esteem. I want to have a life of my own. I want to choose where, how and with whom I share my life” (from website visited on April 15th, 2010). A healthcare professional told: “Most patients are admitted voluntarily, because it is such a hassle trying to get a legal mandate” (interview October 15th, 2010). A legal professional told: “If someone does not want an admission, it is my task to be there for my client. If I see a change to overrule the admission, I will do that, even if it endangers my client’s life. I am the one to make my client’s voice heard” (interview December 2nd, 2010). These quotes illustrate some of the frustrations and tensions between the different actors who come together in the process towards an involuntary admission. As mentioned above, their knowledge and perspectives form the core of this thesis. I consulted experts of whom it may be expected that ‘by virtue of their social or scientific position had an objective view and standpoint on the subject’ (Hutjes & Buuren van 2007). Experts were identified through the network of the Dutch Korsakoff Knowledge Center6, through my own network, and through snowball or chain sampling (Patton 2002, 236) by asking each expert interviewed: “Who knows a lot about…? Whom should I talk to?”. In this preparatory phase I talked with four physicians, an official from the Ministry of Health, Welfare and Sport, a judge, two nurses, a lawyer/psychiatrist and two family members. Topics such as the relationship between law and ethics and the role of coercion in the life of patients suffering from Korsakoff’s syndrome were discussed. Besides, other sources were explored to collect information, for instance conferences, lectures, and movies. Lastly, an initial literature review was conducted. All this helped to gain understanding of relevant issues, assumptions, and theoretical frameworks within this field of research. A few issues in particular aroused my curiosity in this period. These were addressed in a general article in Dutch about the use of the terms ‘patient’ and ‘client’ in nursing homes (van den Hooff & Goossensen 2012) and in an article about the state of affairs surrounding. 6. 16. The Dutch Korsakoff Knowledge Center aims at developing knowledge, practice, and skills in the widest possible sense for patients suffering from Korsakoff’s syndrome. More information can be found at: http:// www.korsakovkenniscentrum.nl/en.

(17) involuntary admission (van den Hooff & Goossensen 2011). The latter is presented in chapter 2 of this thesis.. Data collection After this preparatory phase, a systematic literature review was performed (chapter 3) and the data collection was officially started. All participants were selected by the method of purposeful sampling, which focuses on selecting information rich cases whose study will illuminate the questions under study (Patton 2002, 230). With the cooperation of key informants (healthcare professionals) from the network of the Dutch Korsakoff Knowledge Center, I had access to various nursing homes in the Netherlands with special units for patients suffering from Korsakoff’s syndrome. One nursing home, however, did not give permission to conduct this research due to a relocation of patients. Cases were selected with the help of healthcare professionals in the participating nursing homes. It was not possible to select the patients by myself because I had no permission to study medical files of patients. Because this research focuses at a multi-disciplinary care process, cases were selected involving an active family carer, a cooperative non-aggressive patient, and if possible a legal professional. However, it was not easy to contact legal professionals who assisted patients in the process towards an involuntary admission. For one thing, most of the key informants did not know any of these legal professionals. In general, of course, legal professionals have a short-term relationship with the patient. They are temporarily assigned by Court to assist the patient. Still, two family carers knew which legal professional assisted their relative, and gave permission to contact these legal professionals. The family carers included in this study (1) had a relative admitted to a special unit of a nursing home, (2) took care of the patient prior to the admission, and (3) were still in touch with the patient and willing to participate in this study. In all cases, the healthcare professionals involved first asked the family carer if it was all right for me to contact him or her. After this was confirmed, I phoned the family carer to make an appointment for an interview (chapter 4). The inclusion criteria used to select patients were: (1) having been diagnosed with Korsakoff’s syndrome (2) admitted to a special unit of a nursing home, (3) having a relative or another close person who was willing to participate in the study, and (4) being cared for by this person prior to the admission. Healthcare professionals selected those patients who were thought able to communicate with me without aggression (chapter 5). The table below gives an overview of all cases and participants involved as well as the interviews conducted in this study.. 17. Chapter 1. General Introduction.

(18) General Introduction. Healthcare professional (physician) Healthcare professional (nurse/residential supervisor) Family carer Patient Law professional Legal mandate Total interviews. Nursing Nursing Nursing home 1 Nursing home 2 Nursing home 1 Nursing home 3 Nursing home 4 home 5 home 6 Case 000 Case 001 Case 002 Case 003 Case 004 Case 007 Case 008 Case 009 Case 010 Case 005 Case 006 Total. X. 1. 1. X. X. 1. 1. 1. 1. 1. X. 7. X 1 X X no. 1 1 1 1 no. 1 1 1 NA no. 1 1 X X no. X 1 X X yes. 1 1. 1 died 1 NA yes. 1 1 1 1 yes. 1 2 1 NA no. X 1. NA no. 1 1 1 NA yes. 1 yes. 8 11 6 3. 1. 5. 4. 2. 1. 3. 4. 3. 5. 5. 2. 35. X = no permission to interview NA = not known interview black = did not want to participate. Table ofof cases andand participants. Table1.1.Overview Overview cases participants.. Given that the study was inductive and sought to understand and describe experiences during the admission process, individual semi-structured interviews were considered the best approach to obtain rich data. Qualitative interviewing begins with the assumption that the perspective of others is meaningful, knowable and able to be made explicit (Patton 2002, 341). This interview approach gave the opportunity to ask a range of in-depth questions, allowing the participants to describe their experiences in their own narrative (Patton 2002). All respondents received a letter containing information about the study, and explicitly stated that participation was voluntary, and that all collected material would remain anonymous to ensure privacy. Contact details of the researcher were provided to enable them to ask further information if necessary. At the beginning of the interviews, all respondents gave their written consent to participate. The interviewer noted a high level of participant cooperation in the interviews. This can partly be attributed to the open nature of the interviews, the focus on experiences as perceived by the participants, and the method, which forced the interviewer to be a very active listener (Fernández 2013). The interviews were guided by a topic list formulated by the researcher on the basis of the interviews during the preparatory phase and the initial literature study. In addition, respondents had the opportunity to raise important issues that were not mentioned during the interview. The topic list was not sent in advance to the respondents to prevent they would prepare for these subjects, thereby reducing the contribution of any spontaneous input. An advantage of this kind of semi-structured interview is that it provides an opportunity for respondents to voice their concerns (Dickson-Swift et al. 2006). All interviews were tape recorded, which allowed the interviewer to concentrate on talking strategy and making focused notes. The interview text was transcribed verbatim by the interviewer immediately after the interview session to aid recall, to ensure consistency and accuracy of reporting and thus strengthening the rigour of the study, and to adhere to ethical principles of confidentiality of the data (Beech et al. 2011). Non-verbal signals were. 18.

(19) included in the transcriptions (for instance ‘crying’). Family carers were interviewed at home, patients in their own room in the nursing home, healthcare professionals in their office in the nursing home, and the legal professionals in their own office.. Data analysis This section briefly describes the overall method used for data analysis. Precise descriptions of the methods are provided in the individual chapters. As mentioned above, data were collected by means of a qualitative semi-structured interview approach, which provided lengthy interview transcripts. In general it is considered a real challenge to grasp the essence and meaning of these qualitative data, and to prevent oversimplification (Dierckx de Casterlé et al. 2012, 361). The constant comparative approach was used to analyze the interview data (chapters 4 and 5). This was a two–part process: (1) a thorough preparation of the coding process, and (2) the actual coding process using a qualitative software program (Atlas.ti). As pointed out earlier, our aim was to gain insight into the complexity of involuntary admission processes into long-term care – not to develop a theory. After the first data had been collected, preparation of the coding process began. As codes and memos accumulated, the findings were discussed with the research supervisor of the university. The results of this approach are presented in chapters 4, 5 and 6.. Quality procedures To increase the quality of the research several procedures were used to increase credibility, external validity and reliability. Credibility procedures The credibility of qualitative inquiry depends, among other things, on: (1) rigorous methods for doing fieldwork that yield high-quality data that are systematically analyzed with attention to issues of credibility, and (2) the credibility of the researcher, which is dependent on training, experience, track record, status, and presentation of self (Patton 2002, 552). Regarding criterion (1) first, internal validity was promoted by using field notes and software (Atlas.ti) to categorize and analyze data. Second, the data were discussed with the research supervisors and peer reviewers of the University of Humanistic Studies, Utrecht, so as to enhance the probability that the conclusions made in this research accurately reflect what was wanted to study. Furthermore, validity of the studies was enhanced by testing of intermediate interpretations, obtaining information from various sources such as literature and interviews (sources triangulation), and comprehensively describing the research process and the analysis steps of this research (Boeije 2008). Another procedure used to enhance intern validity was data triangulation; the experiences and perspectives of a variety of participants were used to gain a more informed understanding of the phenomena studied.. 19. Chapter 1. General Introduction.

(20) General Introduction. Regarding criterion (2), the credibility of the researcher was enhanced by interviewing experts in the preparatory phase, attending a case that had been brought to Court, reading jurisprudence and papers of parliament, attending conferences and lectures, and following courses to get acquainted with the interview and analysis techniques. Moreover, others were invited to watch ‘over my shoulder’ during the course of this investigation. They had the possibility to reconstruct the chain of evidence used. To enable this, a detailed documentation of the collected material was perpared, an explanation of the data collection procedures used in the context of the problem, explicit justification of the translation of the data into the final conclusions of the research and reflections (Boeije 2008). External validity procedures External validity relates to generalizability and deals with the question whether findings are transferable to other contexts (Guba & Lincoln 1989, 234). External validity was tried to increase by supplying as much information as possible in the description of the sub-studies, thereby facilitating the reader to judge whether conditions match or not. The highly specific context of our respondents makes it likely that the generalizability to other contexts will be small. Reliability procedures The reliability in this study was increased by the cyclical nature of the investigation. Verification of emergent categories was incorporated into the process of data gathering and analysis, so that fit and relevance could be assured. An important feature of grounded theory is that it does not require that the researcher returns to the original participants to check if participants agree with the researcher’s interpretation of data. An one-sided picture of the involuntary admission process was avoided, however, by the use of different sources: healthcare professionals, family carers and patients. Other procedures used to increase reliability were training in interviewing techniques and verbatim transcribed interviews. The interim results, presented in sub-studies, were discussed with experts from our research group interested in this topic and during PhD meetings. The collected raw data were stored in a separate data file, to which always could be returned. Ethical considerations All empirical studies aim for informed consent, anonymity and respect for privacy/ confidentiality. Approval was obtained from the participating nursing homes and all interviewed participants received a letter containing information about the study stating that participation was voluntary and that anonymity was guaranteed. Contact details of the researchers were provided to allow participants to ask further questions. Prior to the interview a participant gave consent by filling out and signing a consent form. Written consent guarantees active and explicit consent, thus offering the highest guarantees to the. 20.

(21) participant (Chambliss & Russel 2010). All gathered material was processed anonymously. The participants were referred to by numbers to ensure privacy. Finally, the advice given by Fernández (2004) to grounded theorists was followed: “(1) tolerate confusion – there is no need to know a priori and no need to force the data; (2) tolerate regression – researchers might get briefly ‘lost’ before finding their way; (3) trust emerging data without worrying about justification – the data will provide the justification if the researcher adheres to the rigour of the method; (4) have someone to talk to – a grounded theory demands moments of isolation to get deep in data analysis as well as moments of consultation and discussion; (5) be open for emerging evidence that may change the way the researcher thought about the subject matter, and be willing to act on the new evidence; (6) be creative in devising new ways of obtaining and handling data, combining the approaches of others, or using a tested approach in a different way.”. Structure of the thesis This thesis has 8 chapters that represent six studies published as articles in various peerreviewed scientific journals. All studies were set up to answer the research questions as steps towards the ultimate goal of a better understanding of good care during the admission process of patients suffering from Korsakoff’s syndrome into long-term care. Chapter 2 presents an exploration of the legal possibilities and impossibilities regarding forced admissions into longterm care and of the dilemmas that may emerge seen from the healthcare professionals’ perspective. Chapter 3 presents a systematic literature review of published literature in peerreviewed journals. The aim was to explore patients’ and professionals’ views on involuntary admission and ultimately get some clues to reduce negative feelings during admission. Chapter 4 reports on a qualitative empirical study among 11 family carers. It explores their dilemmas during the care seeking process towards an involuntary admission. Chapter 5 illuminates the perspective of a small sample of patients suffering from Korsakoff’s syndrome and sheds light on the way they see, interpret and respond to the care they receive. Chapter 6 reflects on a group discussion with healthcare professionals on the issue of patient decision making competence in the context of day-to-day long-term care. Chapter 7 brings out the different perspectives on ‘doing good’ and the responsibilities of the different actors during involuntary admission processes. In chapter 8 the theoretical and practical implications of all studies are summarized and discussed, and the strengths and limitations of the research method are discussed.. 21. Chapter 1. General Introduction.

(22) General Introduction. References American Psychiatric Association (20000. Diagnostic and Statistical Manual of Mental Disorders, 4th, text revised ed. Washington, DC: American Psychiatric Association. Beauchamp, T.L. & Childress, J.F. (2013). Principles of biomedical ethics. Seventh edition. New York/ Oxford: Oxford University Press. Beech A, Arber A, & Faithfull S. (2011). Restoring a Sense of Wellness following Colerectaral Cancer: a Grounded Theory. Journal of Advanced Nursing. 68(5): 1134-1144. Boeije, H. (2008) Analyseren in kwalitatief onderzoek. Denken en doen. [Analyze in qualitative research. Thinking and Doing.] Amsterdam: Boom Lemma. Chambliss, D.F. & Russel, K. (2010). Making Sense of the Social World: Methods of Investigation, 3rd ed. Thousand Oaks, CA: PineForge Press. Christman, J. (2004). Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies. 117(1-2): 143-164. Day, E., Bentham, P., Callaghan, R., Kuruvilla, T., & George, S. (2013). Thiamine for Wernicke-Korsakoff Syndrome in People at Risk from Alcohol Abuse (Review). The Cochrane Collaboration (7). Chichester, John Wiley & Sons, Ltd.: The Cochrane Library. Delmar, C. (2013). The interplay between autonomy and dignity:summarizing patients voices. Medicine, Health Care and Philosophy. 16(4): 975-981. Dickson-Swift V, James EL, Kippen S, & Liamputtong P. (2006). Blurring Boundaries in Qualitatieve Health Research on Sensitive Topics. Qualitative Health Research, 16(6): 853-871. Dierckx de Casterlé, B., Gastmans, C., Bryon, E., & Denier, Y. (2012). QUAGOL: A guide for qualitative data analysis. International Journal of Nursing Studies. 49(3): 360-371. Draper, B., Karmel, R., Gibson, D., Peut, A., & Anderson, P. (2011). Alcohol-related cognitive impairment in New South Wales hospital patients aged 50 years and over. Australian and New Zealand Journal of Psychiatry. 45(11): 985-992. Fernández, W.D. (2004). The grounded theory method and case study data in IS research: issues and design. In: Information System Foundations: Constructing and Criticising, D. N. Hart & S. Gregor, eds., Canberra: Australian National University, pp. 43-59. Galvin, R., Brathen, G., Ivashynka, A., Hillbom, M., Tanasescu, R., & Leone, M.A. (2010). EFNS guidelines for diagnosis, therapy and prevention of Wernicke encephalopathy. European Journal of Neurology. 17(12): 1408-1418. Glaser, B.G. & Strauss, A.L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine Publishing Company. Goossensen, A., Arts, N. J., & Beltman, M. (2007). Zorgprogramma Korsakov in het verpleeghuis ‘Mij mankeert niks’ [Care Program Korsakoff in the Nursing Home: Nothing’s Wrong with Me]. Rotterdam: Korsakov Knowlegde Center. Groenhout, R.E. (2004). Connected Lives: Human Nature and an Ethics of Care. Lanham: Rowman and Littlefield Publishers INC. Guba E, Lincoln G. (1989). Fourth Generation Evaluation. Beverly Hills: Sage. Hall, W., Farrell, M. & Carter, A. (2014). Compulsory treatment of addiction in patient’s best interests: More rigorous evaluations are essential. Drug and Alcohol Review. 33(May): 268-271.. 22.

(23) Harper, C.G., Giles, M. & Finlay-Jones, R. (1986). Clinical signs in the Wernicke-Korsakoff complex: a retrospective analysis of 131 cases diagnosed at necropsy. Journal of Neurology, Neurosurgery & Psychiatry. 49(4): 341-345. Hendriks, A. (2014). Recht op leven en recht op een zelfgekozen dood: een toetsing van de Nederlandse Euthansiewet aan het EVRM [Right to life and right to a self-chosen death: a review of the Dutch Law to the ECHR]. NTM/NJCM-Bull. 39(2): 151-181. Hutjes, J.M. & van Buuren, J.A. (2007). De gevalsstudie, Strategie van kwalitatief onderzoek. [Case study, Strategy of Qualitative inquiry]. 3Ed. Meppel/Amsterdam/Heerlen: Boom/Open Universiteit. Jones, M. & Alony, I. (2011). Guiding the Use of Grounded theory in Doctoral Studies - An Example for the Australian Film Industry. International Journal of Doctoral Studies. 6(95): 114. KNMG (2007). Medical professionalism, Utrecht: KNMG. Kolb, B. & Whishaw, I.Q. (1985). Fundamentals of Human Neuropsychology, 2 ed. New York: W.H. Freeman and Company. Kopelman, M.D., Thomson, A., Guerrini, I., & Marshal, E.J. (2009). The Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment. Alcohol & Alcoholism. 44(4): 148-154. Oslin, D., Atkinson, R.M., Smith, D.M., & Hendrie, H. (1998). Alcohol related dementia: proposed clinical criteria. International Journal of Geriatric Psychiatry. 13(4): 203-212. Patton, M.Q. (2002). Qualitative Research & Evaluation Methods, 3ed. Thousand Oaks, London, New Delhi: Sage Publications. Post van der, L., Mulder, C.L., Bernardt, C.M.L., Schoevers, R.A., Beekman, A.T.F., & Dekker, J. (2009). Involuntary admission of emergency psychiatric patients: report from the Amsterdam Study of Acute Psychiatry. Psychiatric Services. 60(11): 1543-1546. Schepers, J.P., Koopmans, R.T., & Bor, J.H. (2000). Patients with Korsakoff’s syndrome in a nursing home: characteristics and comorbidity. Tijdschrift Voor Gerontologie en Geriatrie. 31: 113-118. Schermer, M.H.N. (2001). The different faces of autonomy. A study on patient autonomy in ethical theory and hospital practice (dissertation). Amsterdam: VU University. Touwen, D.P. (2008). Voor een ander. Beslissingsverantwoordelijkheden in de verpleeghuisgeneeskunde [For another person. Decision responsibilities in nursing home care] (dissertation). Leiden: Aksant. Van den Hooff, S.L. & Goossensen, A. (2011). Zorgverleners in spagaat bij opname van patienten zonder ziekte-inzicht [Healthcare professionals’ difficult balancing act in admission of patients suffering from Korsakoff’s syndrome into long-term care]. Tijdschrift voor Gezondheidszorg en Ethiek. 21(4): 107-113. Van den Hooff, S.L. & Goossensen, A. (2012). Cliënt of patiënt? De betekenis van aanspreektermen [Client or Patient? The meaning of contact terms]. Denkbeeld. 24 (juni): 6-8. Van Heijst, A. (2011). Professional Loving Care. An ethical view of the healthcare sector. Herent: N.V. Peeters S.A. Van de Wetering, F. (2008). Toekomstscenario’s voor de toepassing van de Wet Bijzondere Opnamen Psychiatrische Ziekenhuizen (Bopz) [Future scenarios for the implementation of the the Dutch Compulsory Admission Act (BOPZ)]. Rotterdam: Erasmus University. Verkerk, M.A. (2001). The care perspective and autonomy. Medicine, Health Care and Philosophy. 4(3): 289-294.. 23. Chapter 1. General Introduction.

(24) General Introduction Victor, M., Adams, R.D., & Collins, G.H. (1989). The Wernicke-Korsakoff Syndrome and Related Neurological Disorders due to Alcoholism and Malnutrition. Philadelphia: PA. F.A. Davis. Welie, S.P.K. (2008). Criteria for assessment of patient competence. A conceptual analysis from the legal, psychological and ethical perspectives (dissertation). Maastricht: Maastricht University. Wijnia, J.W., van de Wetering, B.J.M., Zwart, E., Nieuwenhuis, K.G.A., & Goossensen, M.A. (2012). Evolution of Wernicke-Korsakoff Syndrome in Self-Neglecting Alcoholics: Priliminary Results of Relation with Wernicke-Delirium and Diabetes Mellitus. The American Journal on Addictions. 21: 104-110.. 24.

(25) Chapter 2 Healthcare professionals’ difficult balancing act in admission of patients suffering from Korsakoff’s syndrome into long-term care. This chapter is based on the published article: van den Hooff, S.L. & Goossensen, A. (2011). Zorgverleners in spagaat bij opname van patiënten zonder ziekte-inzicht [in Dutch]. Tijdschrift voor Gezondheidszorg & Ethiek. 21(4): 107-113.. 25.

(26) Healthcare professionals’ difficult balancing act. Summary This article provides an overview of the legal possibilities and impossibilities regarding forced admission into a nursing home (long-term care) of patients without insight into their own illness in general and suffering from Korsakoff’s syndrome in particular. It focuses on the choices, dilemmas and consequences with which the healthcare professionals involved are confronted. They often need to perform a difficult balancing act between the criteria of Dutch legislation and moral obligations to provide good care. Acting in the best interest of the patient always should come first.. Textbox 1. Korsakoff’s syndrome The immediate cause of Korsakoff’s syndrome is a serious lack of thiamine (vitamin B1). In the Netherlands, this disease occurs almost only in alcoholics due to a combination of factors: self-neglect, prolonged bad food, frequent vomiting or even completely stop eating (Arts 2004, 5). Characteristics of this syndrome are: memory disorders, confabulate, orientation problems in time and space, no awareness of illness, uncertain and afraid of failure and central executive dysfunction (Arts 2004, 15-18).. 26.

(27) Healthcare professionals’ difficult balancing act. Healthcare professionals occasionally need to admit patients who lack insight in or have reduced awareness of their illness, such as people suffering from Korsakoff’s syndrome. Problems arise when legal criteria forbid an admission, while healthcare professionals assume that an admission will be beneficial for the person’s health. Involuntary admissions are possibly when criteria laid down in the Dutch Compulsory Admission Act (BOPZ) are met: there should be considerable danger for the person himself or for others due to the person’s psychiatric illness (Hoekstra 1996). Involuntary admission cannot be arranged when these criteria are not met. This may conflict with the healthcare professionals’ medical responsibility to contribute to the physical and mental wellbeing of their patients (Sutorius 2011, 593). Patients also have their own responsibility in healthcare, based on the concept of autonomy. They are considered free, self-governing agents who carry final responsibility for their own health. Patients are entitled to choose for themselves what norms and values they want to pursue, are free to make decisions that are un-coerced and best express the outcomes of their own deliberative process (Christman 2004). In practice, this may lead to complex situations. This article gives an overview of the Dutch admission possibilities into long-term care and the choices and dilemmas facing the healthcare professionals involved in this process. We will first present the case of a patient who lacks awareness of illness: Mr. D. who is suffering from Korsakoff’s syndrome. The definition and characteristics of this syndrome are given in textbox 1. Of course, there are other conditions associated with lack of insight into one’s own illness, such as antisocial personality disorder (van Hasselt 2010, 92), schizophrenia, bipolar disorder (Pijnenborg 2010, 826) or dementia.. Case Mr. D. is chronically addicted to alcohol, is apathetic, has memory problems and severely neglects himself. More than once his family members had found him in a miserable state in his house. A family carer told: “Half-dressed, in his own urine, fallen in a strange position so that he could hardly get up”. At this stage, healthcare professionals could not yet admit Mr. D., first a file had to be compiled. A healthcare professional explained: “We first have to collect instances of these incidents before a legal mandate can be requested”. In the meanwhile no care was given and Mr. D. was mentally and physically deteriorating and his house became more and more filthy. The family carer reported: “Everywhere paper, newspapers, filth, stench of alcohol and mice”. Family carers felt responsible and did as much as possible to keep the situation livable. After a collapse Mr. D. ended up in a hospital, where he physically recovered. Yet, no care was offered for the existing alcohol problem, either because that was not the indication for hospital admission or the diagnosis was missed (Wijnia & Nieuwenhuis 2011). After discharge from hospital, Mr. D. went home without further care. He continued his old life characterized. 27. Chapter 2. Introduction.

(28) Healthcare professionals’ difficult balancing act. by alcohol abuse, further deterioration of mental and physical health, and dignity loss. He still denied that there were any problems. After a second hospitalization, Mr. D. was adequately admitted to an alcohol rehabilitation clinic. The family told: “We were lucky, a doctor who was unknown with the history of Mr. D. referred him to a rehabilitation clinic. Otherwise this probably would not have happened”. After a period of detoxification, Mr. D. was diagnosed with Korsakoff’s syndrome and could be admitted into a nursing home with a specialized unit for patients suffering from Korsakoff’s syndrome. However, Mr. D. had to give his permission for this admission. Due to his lack of awareness of illness, he recently had declared that he did not want to be admitted into long-term care. During the intake procedure, in the presence of the family carer and the assisted living supervisor, the doctor verified the patient’s consent by asking: “Mr. D., you do want to be admitted, right?” D. answered: “Yes.” The doctor said: “Everybody heard the answer? Sir wants to be admitted”. Afterwards in an interview, the family carer told that this consent was manipulated, but “this was the only way to help”. Mr.’s admission was on a ‘voluntary’ basis. On the face of it, this way of handling the situation leaves us with a somewhat ‘uneasy’ feeling. What is happening here, and how can we understand this situation? Is it in order what has happened here? The fact is that this patient formally was voluntarily admitted. Nevertheless, most patients who lack insight into their illness will rarely seek or accept care voluntarily. It follows, logically, that there should be no voluntarily admitted patients suffering from Korsakoff’s syndrome. Nothing is farther from the truth however; many patients suffering from Korsakoff’s syndrome are ‘voluntarily’ admitted into long-term care in the Netherlands. In a small sample of four nursing homes, in total more than half (respectively: 60%, 96%, 40% and 71% per institution) of the patients (n = 254) suffering from Korsakoff’s syndrome had been voluntarily admitted. These patients stay in long-term care units because their brain damage is not curable; they are in a stable condition in which permanent care is necessary. Of course, in view of the long-term deprivation of liberty it is extremely important that admissions into long-term care are handled delicately. A long-term care admission plays a decisive role in patients’ quality of life in the future. How was the voluntary admission of Mr. D. established? And why was chosen for a voluntary admission? Dutch healthcare law identifies three ways in which a patient can be admitted into a long-term care residence such as a nursing home, which will be briefly described below.. Admission possibilities Involuntary admission The situation in which patients oppose against admission, but are still admitted, is referred to as involuntary admissions. In the Netherlands, the Compulsory Admission Act (BOPZ) is applicable in case of an involuntary admission to general psychiatric hospitals, but also in. 28.

(29) case of involuntary admission to psychiatric departments of general and teaching hospitals, to nursing homes and to institutions for the intellectually disabled. The BOPZ assumes the ‘willingness criterion’: admission without ‘the necessary willingness’ of a patient requires the authorisation of a Court or, if there is acute danger, an emergency admission by a provisional detention. This Act dictates three criteria governing compulsory admission. Firstly, the patient does not agree with admission. Secondly, there is danger or potential danger to a patient’s safety or the safety of others as a consequence of the mental disorder diagnosed by a psychiatrist. Thirdly, there are no reasonable alternatives for the compulsory admission (the last resort principle). A definition of ‘danger’ is given in article 1 of the BOPZ (see Textbox 2). The Act defines a mental disorder as inadequate development or pathological disorder of the mental capacities (art 1 par 1 sub d BOPZ), diagnosed by a ‘specialist doctor’. The explanatory memorandum of the legislative proposal (Wet vGGZ), the intended successor of the BOPZ, which is currently being addressed in the House of Representatives7, stipulates that ‘a specialist doctor’ typically refers to a psychiatrist. However, under certain circumstances it is possible that an addiction disorder specialist or specialist in the care for the mentally disabled can act as such (Kamerstukken II, 2009-2010, 32 399, nr. 3, 32).. Textbox 2. What constitutes (potential) danger according to the law? (art 1 par 1 sub f BOPZ) — — — — — — — —. The danger that you will try to take your own life or seriously injure yourself. The danger that you will lose touch with society completely. The danger that you will seriously neglect yourself. The danger that others will become aggressive in response to your problem behaviour. The danger that you are threatening to take someone’s life or cause serious injury. If someone else’s mental health is in jeopardy. The danger that you will neglect someone who has been entrusted to your care. You could present a danger to the safety of other people or their property.. In Court, the judge almost always follows the medical expert’s view on whether or not, in this specific case, a mental disorder exists. Nevertheless, the judge finally makes the ruling (Keurentjes 2007, 60). Jurisprudence of the Supreme Court (HR September 23, 2005) shows that an alcohol addiction cannot lead to the application of the BOPZ unless the person has other mental disorders as well. These other mental disorders should be of such severity that thinking, feeling, willing, judging and acting purposefully are severely influenced, and the caused danger cannot be allocated to the patient, because the disorder predominantly governed the dangerous actions of the patient. It is the task of the medical expert (psychiatrist) to demonstrate the above. A verdict of the Court in The Hague on 1 July 2008 (LJN: B19984) 7. http://www.eerstekamer.nl/wetsvoorstel/32399_wet_verplichte_geestelijke. 29. Chapter 2. Healthcare professionals’ difficult balancing act.

(30) Healthcare professionals’ difficult balancing act. rejected the request for a legal mandate because of the absence of other mental disorders besides the Korsakoff’s syndrome. Generally, the presence of Korsakoff’s syndrome is insufficient to consider a disturbance in mental capacities (see also HR October 3, 2008, conclusion by FF Langemeijer LLM). ‘No commitment - no objection’ admission No court order is required for patients who do not show the necessary willingness and do not resist against the admission (article 60 par 1 BOPZ, see textbox 3). In these cases the BOPZ dictates a procedure through the Center of Indications for Care (In Dutch: Centrum Indicatiestelling Zorg; CIZ). The CIZ independently assesses the necessity of an admission under Article 60 BOPZ. When someone cannot provide for himself anymore an admission may be necessary. A CIZ assessor will ask, in writing or in person if the patient objects to an admission. Objections must be factually understood here. Every expression, even non-verbal, should be considered as such (Leenen et al. 2007, 308). The final report of the CIZ describes: 1. the nature of the disorder of the mental capacities; 2. circumstances that cannot safeguard a living outside a long-term care institution; 3. the way how the patient was informed of his rights to make objections to the admission, and his responses to this information. If the CIZ assessor concludes that admission is necessary, the patient receives the required article 60 BOPZ indication.. Textbox 3. Article 60 BOPZ 1. Admission and stay in an institution for the mentally disables or nursing home of a person who is twelve years or older and does not show the necessary willingness on the matter [...] will only take place if a commission as meant in the third paragraph, deems admission necessary.. Voluntarily admission Patients may be admitted voluntarily if they show the ‘necessary willingness’. If they should lack willingness, the BOPZ requires a legal mandate. If patients show this willingness the Medical Treatment Contract Act (WGBO), which is part of the Dutch Civil Code (CC), is applicable. The WGBO addresses actions in the area of medical treatment, and nursing home care is included in the context of this treatment. A voluntary admission requires a treatment contract. However, the concept of ‘necessary willingness’ is not easy to define. If patients are able to make a statement about their willingness for an admission, it is still very difficult to objectify this statement (Hoekstra 1996). Therefore the question has been raised whether lack of insight into illness automatically leads to the assumption that one will never show any willingness for long-term care admission. This concept of willingness to admission must be distinguished from the concept of willingness to treatment. The BOPZ is clear on this point: an admission does not simply legitimize treatment (Keurentjes 2007, 58). International law, for instance EU directives. 30.

(31) (Welie et al. 2005), UN conventions, such as the UN Principles for the Protection of Persons with Mental Illness (MI principles, UN A/RES/46/119, 1991) and the WHO Resource Book (2005), address the requirements for a voluntary admission (Legemaate et al. 2007, 27-30). A voluntary admission is only possible with the free and informed consent of the patient (WHO 2005, 43). In 2002 the European Court of Human Rights (ECHR) ruled on a case of the admission of a woman suffering from dementia into a nursing home (ECHR 26 February 2002). The woman’s attitude on admission was ambivalent: consent and resistance alternated. The Court considered that there were some circumstances that were important in this case: the fact that the woman was not really locked up, that she could move freely to some extent, and that she was allowed to maintain her social contacts with the outside world. Under these circumstances, the Court concluded by majority vote that there was no deprivation of freedom within the meaning of Article 5 ECHR (Legemaate et al. 2007, 28). In another case (ECHR October 5, 2004), the Court decided that there can be deprivation of freedom even if an institution has an open door policy. In this particular case, the patient was “under continuous supervision and control and was not free to leave” (Legemaate et al. 2007, 29). In these two rulings the ECHR emphasises the importance of the regime under which patients are admitted. If patients cannot simply leave the institution, a deprivation of freedom is likely. In contrast, patients who still have a large amount of freedom, even if they have raised objections to their admission, may not be seen as being deprived from their freedom. In conclusion, two criteria must be taken into account in the assessment of the possibility of voluntary admission to an institution within the framework of the WGBO, namely one’s own willingness and the degree of freedom in the institution.. Considerations of the healthcare professional Returning to our case of Mr. D. and the healthcare professional’s option to ‘force’ a voluntary admission. What are the reasons to opt for a voluntary admission of Mr. D.? The healthcare professional felt that an admission was his moral obligation. He realized that if Mr. D. did not get the care he needed, Mr. D. would quickly resume his old lifestyle with the corresponding alcohol abuse and neglect. Suffering from Korsakoff’s syndrome also meant a high risk of death. The healthcare professional wanted to offer care by admitting Mr. D. in the institution. But is an official legal involuntary admission possible? Probably the danger criterion can be met: Mr. D. will neglect himself, languish, weaken and possibly drink himself to death if he does not get any help. However, it is unlikely that the Court will decide that there is a mental disorder. The previously mentioned case-law (HR October 3, 2008) showed that the presence of Korsakoff’s syndrome generally is insufficient to consider a mental disorder. The healthcare professional in this particular case cannot demonstrate that the Korsakoff’s syndrome is associated with any other mental disorder. So he concluded for himself that it is unlikely that a legal mandate will be awarded. Thus, in view of his patient’s welfare he decided not to request a legal mandate.. 31. Chapter 2. Healthcare professionals’ difficult balancing act.

(32) Healthcare professionals’ difficult balancing act. Is it possible to realize a ‘no commitment - no objection’ admission (article 60 BOPZ)? Does Mr. D. show any willingness or any objections? When asked, Mr. D. always said that he did not want an admission, which can be attributed to his lack of insight into his illness. It is most likely that D. will oppose to an admission when asked by a CIZ assessor. The healthcare professional concluded that an admission on the basis of article 60 BOPZ in this situation probably will not work and is not the right option to follow. What to do next? In this situation, in the healthcare professional’s opinion, no adequate legal solutions are available. The only admission possibility that remains is a voluntary admission. The healthcare professional wonders if Mr. D. shows sufficient willingness and whether the degree of freedom in the nursing home is enough to warrant a voluntary admission. Regarding the latter: Mr. D. has a certain degree of freedom of movement in the current setting. Mr. D. is not placed in a locked ward and he can freely move around in the institutional grounds. Furthermore, Mr. D. is allowed to maintain his social contacts in the outside world and he is allowed to leave the institution if he wishes (in accordance with ECHR October 5, 2002). Due to his illness he most probably will not leave the institution: a lack of initiative and apathy will prevent him from taking effective actions. Next, the healthcare professional checks the willingness criterion. In other words, is Mr. D. showing sufficient willingness to be admitted? In this case, Mr. D. gave ‘permission’ for a voluntary admission after manipulation by the healthcare professional. Or is it rather ‘coercion’ in this situation? And if so, to what extent does this affect the voluntary admission? If someone is affected in such a way that he has less freedom of choice, we can speak of coercion (Schermer 2003, 33). Coercion may take various forms, which various degrees of reduction of freedom of choice to varying extents: 1. manipulation of options (the prospect of a reward or threatening with sanctions); 2. manipulation of information (twisting or withholding information, giving wrong or deliberately one-sided information); and 3. psychological manipulation (flattery, anticipate on guilt feelings). Mr. D. was not sufficiently informed during the admission procedure: only one question needed to be answered. No alternatives were offered and it was not fully explained what the admission exactly entailed. We can conclude that this was a case of coercion in this situation. What does Dutch law say about this situation? The WGBO (article 7:448 par 3 WGBO) states that healthcare professionals may withhold information about proposed research or proposed treatment if they judge that the information will cause ‘manifestly serious harm’ (in Dutch: ‘kennelijk ernstig nadeel’) to their patient, for instance suicide (Keurentjes 2007, 53). This criterion might give healthcare professionals an entry for justifying the application of coercion to realize a voluntary admission. It is evident that Mr. D. will die or seriously neglect himself if he goes back home. However, the criterion ‘manifestly serious harm’ in the WGBO refers to the provision of information about treatment and not about admission. In this case, the healthcare professional is aware that he moves on thin ice by using coercion during this ‘voluntary’ admission.. 32.

(33) Healthcare professionals’ difficult balancing act. The above case illustrates a well-known practice in the provision of care for patients suffering from Korsakoff’s syndrome. Of course it is clumsy to infringe the autonomy of Mr. D. in this way. Is it necessary to act in this way? Healthcare professionals meet needy persons who resist care. Patients suffering from Korsakoff’s syndrome fail to reflect on their own behaviour, they blame others for getting them in this situation. The dilemma of healthcare professionals consists of both wanting to respect the autonomy of vulnerable persons and on the other hand to achieve good care and prevent damage. Healthcare professionals have a strong bias to do well, not to harm and to respect autonomy (Van Heijst 2008, 130). In this situation autonomy means the choice to drink alcohol, even if this might lead to death. It is not easy for those who witness it to take this for granted. In these situations, respecting a person’s autonomy is not always possible. The question always will be whether healthcare professionals tend to impose their own values and standards on their patients. Well-intentioned actions and approaches may not match their patients and add suffering. The result may be that vulnerable others feel that they do not matter anymore and feel worthless (Baart & Grypdonck 2008, 36; Van Heijst 2008, 61). It is important to take into account patients’ own insights, interests and feelings and involve them as much as possible in consultations on admission into long-term care. The most important facet of this situation is whether Mr. D., given his illness, is able to foresee the consequences of his behaviour and habits. Is his continued drinking and not wanting a treatment a free choice or a consequence of the brain damage? And would it be possible to find out on the basis of a conversation with him? And if not, how to proceed? If a patient is sufficiently clear of mind, his opinions and values naturally must be respected. Taking into account that Mr. D. is suffering from Korsakoff’s syndrome, will he be mentally competent enough to make this kind of decisions? Or is he struggling to oversee the consequences of his actions and to make informed decisions —and should therefore be considered incompetent? Tensions may arise when Mr. D.’s personal judgment, the values he relied on in his life, are not respected. Even if Mr. D. does not oversee the consequences of his admission, he probably feels that decisions are made for and about him. The fact that Dutch legislation does not always allow compulsory care for this patient group and that healthcare professionals still opt for some kind of forced admission, requires high precision and sensitivity of healthcare professionals. Deep human needs of the vulnerable person are involved, such as being seen as a human being versus being seen as a thing, and feeling appreciated versus feeling worthless (Timmermann et al. 2011, 15). Such human values cannot be separated from patients’ need for care. Healthcare professionals have a moral duty to connect to vulnerable mentally competent or incompetent others. This calls for interpretation, reflection and consideration (Timmermann et al. 2011, 15) especially in situations where law does not provide sufficient guidance.. 33. Chapter 2. Ethical perspective.

(34) Healthcare professionals’ difficult balancing act. Conclusion A solution to the identified dilemma between autonomy and good care during admission into long-term care could be found by considerate conversations with the patient in which healthcare professionals display great sensitivity. Importantly, they should weigh up norms, values and personal judgment of the patient and estimate on which issues the patient can or cannot see the consequences. This applies to conversations in which admission is discussed, but also to situations after admission. In addition, it is necessary to pursue openness and clarity in healthcare decisions of patients without insight into their illness. Currently, patients are depending on the moral judgments of healthcare professionals and the risk they dare to take. Healthcare professionals who dare take the risk to impose an admission and therefore may act contrary to the law, help, but must infringe the autonomy of the patient. How carefully do healthcare professionals make these decisions? Who controls them? Other healthcare professionals may have to think twice before they admit a patient. They argue that the law does not allow the provision of care to these patients. These more cautious healthcare professionals prefer to avoid any legal sanction resulting from not obeying the law (van Heijst 2005, 149). As a result, a patient suffering from Korsakoff’s syndrome whose case is handled by one of these more cautious healthcare professionals will not receive care and probably will have a poor outcome. To end this unwanted variation in decisions surrounding admissions it is desirable to achieve better alignment of legislation for the group of patients without insight into their own illness, expanding the possibilities of providing care to this group, and to reflect on the actions of healthcare professionals. The authors hope that the legislative proposal8 of the new Mental Health Act (Wet vGGZ) will give an answer to these questions. Future legislation seems to increase the opportunities for admission for patients suffering from Korsakoff’s syndrome. In the present proposal addiction to alcohol and drugs falls within the scope of the Act (p.15).. 8. 34. Parliamentary document 2009/10, 32.399, nr.3.

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