Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands.

BACKGROUND: Assessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied. AIM: To explore the perspectives of parents on the assessment of QoL of their children. METHODS: We conducted a qualitative study, forming three focus groups with 22 parents of children with PIMD to explore their views on what is necessary to assess QoL of their children and subsequently, who is best suited to assess QoL. RESULTS: Parents describe a long-term relationship of the assessor with family (child and parents), with trust as an important aspect, as a requirement to assess QoL. Parents consider family members, preferably the parents themselves as the best assessors of QoL, followed by siblings. Professional caregivers, mostly mentioned by name, are considered the next alternative. Most parents thought that physicians do not know the child well enough to assess their QoL. CONCLUSIONS: In conclusion, the parents of children with PIMD in our study consider trust and a long-term relationship essential for assessing QoL.

The perspectives of in-hospital healthcare professionals on the timing and collaboration in advance care planning: A survey study.

Background: Hospital admissions are common in the last phase of life. However, palliative care and advance care planning (ACP) are provided late or not at all during hospital admission. Aim: To provide insight into the perceptions of in-hospital healthcare professionals concerning current and ideal practice and roles of in-hospital palliative care and advance care planning. Methods: An electronic cross-sectional survey was send 398 in-hospital healthcare professionals in five hospitals in the Netherlands. The survey contained 48 items on perceptions of palliative care and ACP. Results: We included non-specialists who completed the questions of interest, resulting in analysis of 96 questionnaires. Most respondents were nurses (74%). We found that current practice for initiating palliative care and ACP was different to what is considered ideal practice. Ideally, ACP should be initiated for almost every patient for whom no treatment options are available (96.2%), and in case of progression and severe symptoms (94.2%). The largest differences between current and ideal practice were found for patients with functional decline (Current 15.2% versus Ideal 78.5%), and patients with an estimated life expectancy <1 year (Current 32.6% versus ideal 86.1%). Respondents noted that providing palliative care requires collaboration, however, especially nurses noted barriers like a lack of inter-professional consensus. Conclusions: The differences between current and ideal practice demonstrate that healthcare professionals are willing to improve palliative care. To do this, nurses need to increase their voice, a shared vision of palliative care and recognition of the added value of working together is needed.

What About Us? Experiences of Relatives Regarding Physician-Assisted Death for Patients Suffering from Mental Illness: A Qualitative Study.

Physician-assisted death (PAD) for patients suffering from mental illness is legally permitted in the Netherlands. Although patients' relatives are not entrusted with a legal role, former research revealed that physicians take into account the patient's social context and their well-being, in deciding whether or not to grant the request. However, these studies focussed on relatives' experiences in the context of PAD concerning patients with somatic illness. To date, nothing is known on their experiences in the context of PAD concerning the mentally ill. We studied the experiences of relatives with regard to a PAD request by patients suffering from mental illness. The data for this study were collected through 12 interviews with relatives of patients who have or had a PAD request because of a mental illness. We show that relatives are ambivalent regarding the patient's request for PAD and the following trajectory. Their ambivalence is characterised by their understanding of the wish to die and at the same time hoping that the patient would make another choice. Respondents' experiences regarding the process of the PAD request varied, from positive ('intimate') to negative ('extremely hard'). Some indicated that they wished to be more involved as they believe the road towards PAD should be a joint trajectory. To leave them out during such an important event is not only painful, but also harmful to the relative as it could potentially complicate their grieving process. Professional support during or after the PAD process was wanted by some, but not by all.

Challenges in the implementation and evaluation of a transmural palliative care pathway for acutely hospitalized older adults; lessons from the PalliSupport program: A qualitative process evaluation study.

OBJECTIVES: To improve transmural palliative care for acutely admitted older patients, the PalliSupport transmural care pathway was developed. Implementation of this care pathway was challenging. The aim of this study was to improve understanding why the implementation partly failed. DESIGN: A qualitative process evaluation study. SETTING/PARTICIPANTS: 17 professionals who were involved in the PalliSupport program were interviewed. METHODS: Online semi-structured interviews. Thematic analysis to create themes according to the implementation framework of Grol & Wensing. RESULTS: From this study, themes within four levels of implementation emerged: 1) The innovation: challenges in current palliative care, the setting of the pathway and boost for improvement; 2) Individual professional: feeling (un)involved and motivation; 3) Organizational level: project management; 4) Political and economic level: project plan and evaluation. CONCLUSION AND IMPLICATIONS: We learned that the challenges involved in implementing a transmural care pathway in palliative care should not be underestimated. For successful implementation, we emphasize the importance of creating a program that fits the complexity of transmural palliative care. We suggest starting on a small scale and invest in project management. This could help to involve all stakeholders and anticipate current challenges in palliative care. To increase acceptance, create one care pathway that can start and be used in all care settings. Make sure that there is sufficient flexibility in time and room to adjust the project plan, so that a second pilot study can possibly be performed, and choose a scientific evaluation with both rigor and practical usefulness to evaluate effectiveness.

The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study.

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers.

Experiences and views of Dutch general practitioners regarding physician-assisted death for patients suffering from severe mental illness: a mixed methods approach.

BACKGROUND: In the Netherlands, physician-assisted death (PAD) is allowed under certain conditions. Patients who suffer from mental illnesses are not excluded from this practice. In 2018, general practitioners (GPs) performed 20 out of a total of 67 cases of EAS for psychiatric suffering. OBJECTIVE: More insight into GPs' experiences and views with regard to PAD in psychiatry. DESIGN: The data for this study were obtained through a survey amongst 500 randomly selected Dutch GPs and by in-depth interviews with 20 Dutch GPs. SETTING: A survey study and in-depth interviews. SUBJECTS: Dutch GPs. RESULTS: 86 out of 101 GPs found it conceivable to perform EAS in case of somatic disease, and 51 out of 104 GPs found it conceivable in the case a patient suffered from a mental illness only. The main reason given for refusing an PAD request was that the criteria of due care were not met. Reasons for supporting psychiatric PAD related to responsibility, self-determination, compassion, fairness, and preventing suicide. Reasons for not supporting psychiatric PAD were related to the scope of medicine, a perceived lack of experience, uncertainties regarding the criteria of due care and life-expectancy. CONCLUSION: GPs are less likely to perform PAD for suffering from a mental illness, compared to somatic suffering. Some GPs apply an extra criterion of 'life-expectancy' in case of PAD for suffering from a mental illness. Refusing PAD based on a long life expectancy keeps open the possibility of recovery, but may also just prolong the suffering and add to the unbearableness of it.KEY POINTSCurrently, there is no qualitative research on what the views are of general practitioners regarding the subject of physician-assisted death (PAD) for patients suffering from severe mental disorders.General practitioners are less likely to consider a request for physician-assisted death by a patient suffering from a psychiatric disorder, compared to somatic suffering. Reasons for supporting psychiatric PAD related to responsibility, self-determination, compassion, fairness, and preventing suicide.Reasons for not supporting psychiatric PAD were related to the scope of medicine, a perceived lack of experience, uncertainties regarding the criteria of due care and life-expectancy.Significance for the reader: Although allowed in the Netherlands, PAD in case of severe mental suffering remains a controversial topic. We need in-depth information about the actual practice of it to have an informed debate with regard to this subject.

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study.

BACKGROUND: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. METHODS: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. RESULTS: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. CONCLUSION: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

BACKGROUND: The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. METHODS: We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. RESULTS: Researchers' efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers' efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. CONCLUSION: Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

Context-Relative Norms Determine the Appropriate Type of Consent in Clinical Biobanks: Towards a Potential Solution for the Discrepancy between the General Data Protection Regulation and the European Data Protection Board on Requirements for Consent.

Clinical biobanks processing data of participants in the European Union (EU) fall under the scope of the General Data Protection Regulation (GDPR), which among others includes requirements for consent. These requirements are further specified by the Article 29 Working Party (WP29)-an EU advisory body currently known as the European Data Protection Board (EDPB). Unfortunately, their guidance is cause for some confusion. While the GDPR allows participants to give broad consent for research when specific research purposes are still unknown, the WP29 guidelines suggest that additional consent for specific uses should be obtained in addition to broad consent when this becomes applicable. This discrepancy elicits the question whether clinical biobanks can fail the requirement of consent if they obtain broad consent, but not a specific consent for each biomedical study. We analysed this discrepancy within the framework of contextual integrity, in order to describe the context-relative informational norms that govern information flows in clinical biobanks. However, our analysis demonstrates that there is no uniform set of norms that can be applied to all clinical biobanks. As such, neither the GDPR nor the WP29 guidance can act as a "one size fits all" approach to all clinical biobanks. Rather, differences between clinical biobanks-especially regarding the scientific aims and patient populations-make the case for context-relative norms that determine the appropriate type of consent.

A dignified last phase of life for patients with a migration background: A qualitative study.

BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries. AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients. DESIGN: Qualitative thematic analysis of semi-structured interviews. PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed. RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses. CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.

How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument.

BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus. METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

Considering quality of life in end-of-life decisions for severely disabled children.

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. AIMS: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. METHODS: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. RESULTS: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS. CONCLUSIONS: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions.

[Appropriate care in the last phase of life]. / Passende zorg in de laatste levensfase.

OBJECTIVE: To identify the types of care that patients and relatives perceive as appropriate or inappropriate in the last phase of life. DESIGN: Questionnaire survey. METHOD: By means of an internet questionnaire with open questions, we asked patients and relatives about their experiences of care in the last phase of life and if they found it appropriate or inappropriate, and why. We recruited via e-mails, Twitter, Facebook, newsletters and links on homepages of patient organisations. Members of a Dutch large organisation for older people (Unie KBO) received the questionnaire on paper. RESULTS: Forty-five patients and 547 relatives described received one or more cases. We found 429 cases of appropriate care and 309 different cases of inappropriate care. We identified five common dimensions of appropriate and inappropriate care, i.e., supportive care, treatment decisions, location of care, following the patient's wishes and communication. In the cases of appropriate care, all five dimensions were regularly mentioned; supportive care being most-frequently mentioned. In cases of inappropriate care, the dimensions treatment decisions, supportive care and communication were most often mentioned. Descriptions of appropriate care more frequently concerned patients with cancer, and descriptions of inappropriate care more frequently concerned patients with other somatic conditions or psychiatric conditions. Nurses or carers and general practitioners were more often mentioned in descriptions of appropriate care, and medical specialists more often mentioned in descriptions of inappropriate care. CONCLUSION: Appropriate care appears to be a wide-ranging term covering supportive care, treatment decisions, communication, following the patient's wishes, and the location where care is provided. Inappropriate treatment decisions and communication problems are the main threats to appropriate care in the last phase of life.

How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities.

BACKGROUND: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. AIMS: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. METHODS: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. RESULTS: A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. CONCLUSION: The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.

End-of-life decision-making for children with severe developmental disabilities: The parental perspective.

BACKGROUND AND AIMS: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. METHODS AND PROCEDURES: We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made. OUTCOMES AND RESULTS: We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive. CONCLUSIONS AND IMPLICATIONS: Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team.

Individual responsibility, solidarity and differentiation in healthcare.

OBJECTIVES: Access to healthcare in most western societies is based on equality. Rapidly rising costs have fuelled debates about differentiation in access to healthcare. We assessed the public's perceptions and attitudes about differentiation in healthcare according to lifestyle behaviour. METHODS: A vignette study was undertaken in participants in a colorectal cancer screening pilot programme in the Netherlands. Screenees with a negative test result received a questionnaire in which nine hypothetical situations were described: three different healthcare settings (screening, lung cancer, chronic obstructive pulmonary disease) combined with three forms of differentiation each: a difference in premium, waiting list ordering or copayment according to lifestyle. We evaluated the responses using a general hierarchical linear model. RESULTS: The percentage of participants in agreement with differentiation varied from 20% to 58% (overall mean of 40%). Significantly more participants were in favour of giving a premium discount to those who do not engage in unhealthy behaviour compared with supporters for higher payments for those who do. More differentiation was supported for non-smoking versus smoking cessation than for participation versus non-participation in screening. We observed in-group favouritism in smokers, but no significant effects of age or disease. There was no support for waiting list ordering based on lifestyle. CONCLUSIONS: Results of this study show that Dutch citizens eligible for colorectal cancer screening are in favour of some form of financial differentiation in the distribution of healthcare, but that significant differences exist between type of setting and the type of behaviour. Our study can be used in the ongoing discussion about solidarity and behaviour in healthcare.

Where is the citizen? Comparing civic spaces in long-term mental healthcare.

This paper explores the spatial properties of several notions of citizenship used in long-term mental healthcare. We claim that speaking of citizenship is a way of drawing borders: some people fall inside and some fall outside the civic domain. Informed by Science and Technology Studies, we use topological methods to see where borders are drawn by different notions of citizenship and analyse the notions of space that are co-produced with them. With this study we develop a new way of thinking about citizenship: citizenship as 'being-in-place'. Being in-place can emancipate clients and help them expand their social networks.

Ethical issues of genetic susceptibility testing for occupational diseases: opinions of trainees in a high-risk job.

PURPOSE: Genetic research has opened up possibilities for identification of persons with an increased susceptibility for occupational disease. However, regulations considering the ethical issues that are inevitably associated with the use of genetic tests for susceptibility for occupational diseases are scarce. We investigated whether opinions of an intended stakeholder group, that is, student nurses, are sufficiently addressed by existing recommendations. METHODS: Attitudes and opinions of Dutch student nurses toward a genetic test for susceptibility to occupational contact eczema were studied in a qualitative setup using focus groups, interviews and electronic questionnaires. The results were compared with guidelines and recommendations extracted from the literature. RESULTS: Sixty-nine percent of the student nurses said they would partake in a genetic test for susceptibility to occupational contact eczema when available. Concerns were expressed regarding the difficulty of interpreting test results, the utility of the test result in practice and the necessity of genetic tests for non-severe diseases. For the issue of privacy and confidentiality, the students expressed few worries and much confidence. The existing guidelines largely covered the students' opinions. Still, the data emphasized the need for good individual risk communication both before and after testing, taking into account that the test concerns susceptibility. CONCLUSIONS: Comparing the students' statements with the issues addressed by the guidelines, we conclude that the guidelines should pay more attention to risk communication and practical advice accompanying the test results.

Opening the gift: social inclusion, professional codes and gift-giving in long-term mental healthcare.

Deinstitutionalisation has not only made the social inclusion of clients a key objective in long-term mental healthcare, it may also affect the role of the care professional. This article investigates whether the social inclusion objective clashes with other long-standing professional values, specifically when clients give gifts to care professionals. In making a typology of gifts, we compare the literature on gift-giving with professional codes for gifts and relate both to the objective of social inclusion of clients. Our typology draws on an analysis of ethnographic fieldwork carried out in 2007/2008 at a Dutch mental healthcare centre. We identify four types of gifts for professionals in long-term mental healthcare, each relating individually to professional codes and the objective of social inclusion of clients. Only the 'personal gift' directly supports social inclusion, by fostering personal relationships between professionals and clients. Acceptance of this type of gift is advocated only for long-term care professionals. We suggest that professional codes need to consider this typology of gifts, and we advocate promoting reflexivity as a means of accounting for professional behaviour in deinstitutionalised care settings.

[Patients with unusual requests for extractions 2. Mental incompetency and psycho-pathologic causes]. / Patiënten met ongewone extractiewensen 2. Wilsonbekwaamheid en psychopathologische oorzaken.

If there is no indication for tooth removal purely based on dental criteria, but the patient requests for removal due to fear of dental treatment, or because of a mental disorder such as posttraumatic stress disorder, a somatoform pain disorder or a disorder of body image perception, then the question is whether the patient is mentally competent to make this decision. In case of a tooth removal request on psychopathologic basis, a dentist has to refuse to carry out such treatment, but he should make an effort to help or guide the patient in some other way.