Qualitative study evaluating the expectations and experiences of Dutch parents of children with chronic gastrointestinal symptoms visiting their general practitioner.

OBJECTIVES: Chronic gastrointestinal symptoms are common among children and affect their daily activities and quality of life. The majority will be diagnosed with a functional gastrointestinal disorder. Effective reassurance and education are, therefore, key components of the physician's management. Qualitative studies have shown how parents and children experience specialist paediatric care, yet less is known about general practitioners (GPs), who manage most cases in the Netherlands and have a more personal and enduring relationship with their patients. Therefore, this study evaluates the expectations and experiences of parents of children visiting a GP for chronic gastrointestinal symptoms. DESIGN: We conducted a qualitative interview study. Online interviews were audio and video recorded, transcribed verbatim and independently analysed by the first two authors. Data were collected and analysed concurrently until data saturation was reached. Using thematic analysis, we developed a conceptual framework reflecting respondent expectations and experiences. We performed a member check of the interview synopsis and the conceptual framework. SETTING: Dutch primary care. PARTICIPANTS: We purposively sampled participants from a randomised controlled trial evaluating the effectiveness of faecal calprotectin testing in children with chronic gastrointestinal complaints in primary care. Thirteen parents and two children participated. RESULTS: Three key themes emerged: disease burden, GP-patient relationship and reassurance. Often, the experienced disease burden and the pre-existing GP-patient relationship influenced expectations (eg, for further investigations or a sympathetic ear), and when a GP fulfilled these expectations, a trusting GP-patient relationship ensued that facilitated reassurance. We found that individual needs influenced these themes and their interrelationships. CONCLUSION: Insights provided by this framework could help GPs managing children with chronic gastrointestinal symptoms in daily practice and may therewith improve the consultation experience for parents. Further research should evaluate whether this framework also holds true for children. TRIAL REGISTRATION NUMBER: NL7690.

Sick or Sad? A Qualitative Study on How Dutch GPs Deal With Sadness Complaints Among Young Adults.

Feelings of sadness among young adults related to a certain phase of life or to societal factors run the risk of being interpreted as an individual medical problem. Therefore, healthcare professionals should more often widen their perspective and consider de-medicalization as being part of their professional responsibility too. This article presents results from a qualitative interview conducted with 13 GPs in different phases of their career to get more insight into the way they deal with complaints of sadness among young adults. All participants acted proactively but in different ways. Based on the interviews, a typology of three types of general practitioners has been created: the fast referrer, the expert, and the societal GP. There seems to be a paradox in the way GPs think about de-medicalization on a macro level and the way they act on a micro level. Elaborating on Parsons'(1951) classical concept of the sick role, this study introduces the term semi-legitimized sick role to clarify this paradox. The third type, "the societal GP", appears to be the most able to show a more multifactorial view on complaints of sadness. Therefore, this type connects the most to a course of de-medicalization.

Developments in the practice of physician-assisted dying: perceptions of physicians who had experience with complex cases.

BACKGROUND: Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide (EAS) with their physicians and the way physicians experience the practice of EAS. AIM: To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. METHODS: We conducted a secondary analysis of in-depth interviews with 28 Dutch physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN (Support and Consultation for Euthanasia in the Netherlands) as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed. RESULTS: Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what (family of) patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched. CONCLUSIONS: The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society.

Considerations on requests for euthanasia or assisted suicide; a qualitative study with Dutch general practitioners.

Background: In the Netherlands, euthanasia or assisted suicide (EAS) is neither a right of the patient nor a duty of the physician. Beside the legal requirements, physicians can weigh their own considerations when they decide on a request for EAS. Objective: We aim at a better understanding of the considerations that play a role when physicians decide on a request for EAS. Methods: This was a qualitative study. We analysed 33 interviews held with general practitioners (GPs) from various regions in the Netherlands. Results: The considerations found can be divided in three main types. (i) Perceived legal criteria, (ii) individual interpretations of the legal criteria and (iii) considerations unrelated to the legal criteria. Considerations of this 3rd type have not been mentioned so far in the literature and the debate on EAS. Examples are: the family should agree to EAS, the patient's attitude must reflect resignation, or conflicts must be resolved. Conclusions: Our study feeds the ethical discussion on the tension that can arise between a physician's own views on death and dying, and the views and preferences of his patients. When considerations like 'no unresolved conflicts' or 'enough resignation' influence the decision to grant a request for EAS this poses questions from an ethical and professional point of view. We hypothesise that these considerations reflect GPs' views on what 'good dying' entails and we advocate further research on this topic.

Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public.

BACKGROUND: The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia. METHODS: In this qualitative study, 16 medical specialists, 19 general practitioners, 16 elderly physicians and 16 members of the general public were interviewed and asked for their opinions about a vignette on euthanasia based on an AED in a patient with advanced dementia. RESULTS: Members of the general public perceived advanced dementia as a debilitating and degrading disease. Physicians emphasized the need for direct communication with the patient when making decisions about euthanasia. Respondent from both groups acknowledged difficulties in the assessment of patients' autonomous wishes and the unbearableness of their suffering. CONCLUSION: Legally, an AED may replace direct communication with patients about their request for euthanasia. In practice, physicians are reluctant to forego adequate verbal communication with the patient because they wish to verify the voluntariness of patients' request and the unbearableness of suffering. For this reason, the applicability of AEDs in advanced dementia seems limited.

Dutch physicians on the role of the family in continuous sedation.

In order to relieve intractable suffering of a terminal patient, doctors may decide to continuously sedate a patient until the end of life. Little research is done on the role the family plays during the process of continuous sedation. This study aims to get a view of doctors' experiences with continuous sedation, and the role of the family throughout that process. We held in-depth interviews with 48 doctors (19 general practitioners, 16 nursing home doctors and 18 medical specialists). Participants were selected varying in experience and opinions concerning end-of-life decisions. Dutch physicians experience the role of family in continuous sedation as important and potentially difficult. Difficulties may rise especially during the final stages when the patient is no longer conscious and family members are waiting for death to come. Disagreement may arise between physician and family, concerning the dignity of the dying process or the question whether the sedated patient is suffering or not. Some physicians report they hastened the dying process, in order to relieve the families' suffering.

Complexities in euthanasia or physician-assisted suicide as perceived by Dutch physicians and patients' relatives.

CONTEXT: The practice of euthanasia and physician-assisted suicide (EAS) is always complex, but some cases are more complex than others. The nature of these unusually complex cases is not known. OBJECTIVES: To identify and categorize the characteristics of EAS requests that are more complex than others. METHODS: We held in-depth interviews with 28 Dutch physicians about their perception of complex cases of EAS requests. We also interviewed 26 relatives of patients who had died by EAS. We used open coding and inductive analysis to identify various different aspects of the complexities described by the participants. RESULTS: Complexities can be categorized into relational difficulties-such as miscommunication, invisible suffering, and the absence of a process of growth toward EAS-and complexities that arise from unexpected situations, such as the capricious progress of a disease or the obligation to move the patient. The interviews showed that relatives of the patient influence the process toward EAS. CONCLUSION: First, the process toward EAS may be disrupted, causing a complex situation. Second, the course of the process toward EAS is influenced not only by the patient and his/her attending physician but also by the relatives who are involved. Communicating and clarifying expectations throughout the process may help to prevent the occurrence of unusually complex situations.

Childhood ADHD: a stepped diagnosis approach.

Since publication of DSM-IV in 1994, the prevalence of parent-reported diagnosed attentiondeficit/hyperactivity disorder (ADHD) has tripled to more than 10% of children. Although it is hard to know for sure whether ADHD is overdiagnosed, underdiagnosed, or misdiagnosed, it is argued that ADHD is especially prone to diagnostic inflation and overdiagnosis. Therefore, we propose a model of stepped diagnosis for childhood ADHD, which may reduce overdiagnosis without risking undertreatment. Calling attention to stepped diagnosis and formalizing the steps may improve its application in clinical practice.

Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: a mixed methods approach.

BACKGROUND: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. AIM: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. DESIGN: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. RESULTS: Most respondents agreed with the requirement of a patient request (64-88%) and the absence of a requirement concerning life expectancy (48-71%). PAS was thought acceptable by 24-39% of respondents for patients requesting it because of mental suffering due to loss of control, chronic depression or early dementia. In the case of severe dementia, one third of physicians, 58% of nurses and 77% of the general public agreed with performing euthanasia based on an advance directive. Interviewees illustrated these findings and supported the Act. CONCLUSIONS: Health care professionals and the general public mostly support the legal requirements for euthanasia and PAS. The law permits euthanasia or PAS for mental suffering but this possibility is not widely endorsed. The general public is more liberal towards euthanasia for advanced dementia than health care professionals. We conclude that there is ample support for the law after eight years of legal euthanasia.

Empathy and the application of the 'unbearable suffering' criterion in Dutch euthanasia practice.

A pivotal due care criterion for lawful euthanasia in the Netherlands is that doctors must be convinced that a patient requesting for euthanasia, suffers unbearably. Our study aims to find out how doctors judge if a patient suffers unbearably. How do doctors bridge the gap from 3rd person assessment to 1st person experience? We performed a qualitative interview study among 15 physicians, mainly general practitioners, who participated earlier in a related quantitative survey on the way doctors apply the suffering criterion. Results show that doctors follow different 'cognitive routes' when assessing a patients suffering in the context of a euthanasia request. Sometimes doctors do this imagining how she herself would experience the situation of the patient ('imagine self'). Doctors may also try to adopt the perspective of the patient and imagine what the situation is like for this particular patient ('imagine other'). Besides this we found that the (outcome of the) assessment is influenced by a doctor's private norms, values and emotions considering (the performance of) euthanasia. We conclude by arguing why doctors should be aware of both the 'cognitive route' followed as well as the influence of their own personal norms on the assessment of suffering in the context of euthanasia requests.